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Complex Atypical Endometrial Hyperplasia

Jun 14, 2008 - 162 comments
Tags:

hysterectomy

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hyperplasia

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endometrial

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complex

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atypical



Hi All!  
Need some suggestions/advice. I am a 54 yr old woman who has been spotting/bleeding for the past 3 1/2 years. EVERY DAY! Only went away for 5 months 2 1/2 yrs ago, then on again. Just had an endometrial biopsy at the "clinic" (charity care), and they say I have this complex atypical endometrial hyperplasia. They are telling me I need a hysterectomy, but before I can get it I need a hysteroscopy first. Telling me it is pre-cancerous, but that 40-55% is usually cancerous. Was also diagnosed with HepC in 11/07, and the blood results were that it was so low it was undectable. Also had a liver biopsy in May 08, but did not get results back yet.Add high blood pressure and high cholesterol to that. Now, since I had to have medical clearance for the hysperoscopy, the Dr took and EKG in her clinical office, and said I needed to have a stress test done. I REFUSED. She said she "thinks", from reading the EKG that something is wrong with my heart. Since I refused, she ordered an ultra sound of my heart instead. My main question is: Does this Complex Atypical Endometrial Hyperplasia mean pre-cancerous IS REALLY cancer up further in the uterous? They are scaring me to death, and I feel that some of the new -to -be Dr's at the Clinic are really guessing. Maybe I am wrong, but I do know treatment is much different if you have insurance. Oh, right now I am on Lovastatin for my high cholesterol,(she says bad HD- is like 238 or something) and Hydrochlorat for my high blood pressure (normally around 154/74) but shot up to 200/90 something when I  was in the hospital getting the Liver biopsy). Also, I have only been on the Hydrochlorat for 5 days now, and they said I would have large amounts of water output, but I have not seen it yet. I know I confused a lot of people. Just too much on my mind so I am giving this a try because the Clinics will not give me anything for my nerves. They said "counseling". I said - h--, I know what is wrong with me, all I need to do is pray, talk to my family and find out what the heck is going on with me. they keep adding more s--- to the pile.
Sorry for rambling. First time. anxious to find out mainly about the endometrial stuff going on.
Wendyl

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by Sharon2714, Jul 09, 2008
u know ur body better than any lab report or radiologist ... a commplex atypical endometrial hyperplasia that causes relates symptoms should be removed ... get ur preop in order and go to a responsile gynecologist that is ready to treat u as u need to ... even charity care can send u for referrals ... good look and i pray u strength to ask for the all important answers that u need
good luck
sharon

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by coogeegirl, Jul 09, 2008

I was initially diagnosed with endometrial hyperplasia which was found in the course of infertility investigations, because I was so anxious to have a child, I delayed the invevitable until finally the diagnosis came back as cancer and I had no other option to have a hysterectomy.

So to answer your question your diagnosis of endoemetrial hyperplasia is a pre cancerous condition and I would strongly recommend that you follow your doctors advise on this health issue, but my main recommendation is that it is a gyn/onc that performs your operation, not because your condition is canceruous yet but because they are the best people to have on your side in this area of medicine.

Good Luck and if you need to email me with any questions please do


Jenny

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by debbie147, Sep 30, 2008
i too have just been diagnosed and it has been the most stressful and frightning experience of my life.  I have just recieved my appointment for my hysterectomy which is in 6 weeks time.  I am only 37 and i have no doubt i'm doing the right thing because the thought of doing nothing and getting cancer scares me.  

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by collins323, Oct 13, 2008
I too have been diagnosed with atypical complex endometrial hyperplasia.  I am 31 and scared to death.  My hyterectomy is 11/18/08.  I'm still waiting for the rest of my test results to come back.  As a mother of three under ten I fill sure this is the right choice for me.  


Good Luck you all will be in my prayers.

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by Paulette914, Nov 17, 2008
I was recently diagnosed with complex atypical endometrial hyperplasia via a uterine biopsy and suspicious intravaginal ultrasound.  I'm 50 and was having occasional lengthy bleeding, yet regular cycles in between.  I am scheduled to have a consult this friday with a gyn/onc to discuss further testing and options.  It is frightening since I feel that the options I've researched may point toward hysterectomy.  I would like to be as conservative as possible and wonder if there is other options such as monitoring the endometrium via scope to detect cellular changes along with balancing the unopposed estrogen and possibly the gonadatropin regimen.   Has anyone had this course of action and what are your experiences thus far.  I really am not ready to dive into menopause and the other consequences of total hysterectomy (fearful of the changes that result to my quality of life).  I know that the big issue is to preserve my health and longevity; but are there other options.  How do they know that there isn't cancer in other parts of the uterus.  I would appreciate your comments and support.
Paulette

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by dtrc, Dec 05, 2008
I was also diagnosed in early Nov 2008 with atypical adenomotous, also  kmown as a complex type of hyperplasia.  My Gyn gave me a couple options.  Do nothing , there is no hurry abd just keep an eye on things, with frequent endo biopsies.  Not something I really favored. The other option is a hysterectomy.  Which I am planning.  I just cannot wait and see how it will progress.  So for me this seems like the best options.  Not looking forward to menopause , but know I will be able to take hormone replacement.  I requested to see an GYN oncologist to sort out all of the details etc.  My biggest concern is staging at the time of surgery if necessary.  The good news, is the endo cancer is very very treatable, and I suspect that as long as we do treat it if will be good.  Does not take away the worry or stress behind it, but each day sems to be just a little less scary.  

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by Paulette914, Dec 07, 2008
I am facing my total hysterectomy this thursday, pat tmw.  I feel most overwhelmed by the staging at surgery and my recovery; how it will change me as a woman.  It is frightening first to go through the changes that occur with total hysterectomy; however, i know this is necessary given the statistics and the worry that would result if I don't go through this procedure.  How do u get ready for something like this.  People say think positive.  It's true that endo ca is very curable, but I still feel like it's a bad hand of cards.  When u feel like you've done nothing to cause the problem, yet it's there and you have to choose what u don't want to choose.  But who wants to have a problem, and no one deserves it.  I feel for others going through the same concerns and I pray that someone holds that woman's hand and tells her she is so much more than a body part.  I will try to look forward and imagine that this could have been a chance to live longer and heathier.  We can't ignore or turn away from what we must face.  My thoughts and prayers are with others to have support and strength and live long wonderful lives.  I have spent my life caring for others, as a mom and as a health professional.  It's so much easier to make recommendations and support others than to personalize it. Wishing you well.  As woman, we have so much to give.

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by Kathy901, Jan 21, 2009
Has anyone noticed how the only option that seems to be supported by western medicine is to surgically remove the offending organ?? I also have been diagnosed with complex endometrial hyperplasia with atypia. I was told that there were other options, but when I actually chose the "wait and see" option with periodic testing, I was made to feel as if I just stuck a knife in my heart. It was unbelievable how quickly the doctor's demeanor changed. I've read all the studies and realize the chances I am taking. But it is an educated risk and one I am willing to take. This is not an impending death sentence -- it does indeed need to be watched with a careful eye - but it's amazing to me how fast women are led to hysterectomies. Don't get me wrong....I am not, nor would I ever question a woman who has made that choice. We all have different reasons for choosing one way over the other. All must be respected, and I do. But be prepared to really fight to actually proceed on options outside of surgery. As for me, I am opting to go a more holistic route. I'm learning about the PH balance in our bodies and the ramifications of being out of balance. I'm learning about various supplements that do indeed act against pre-cancer cells. I'm learning about antioxidents and free radicals. I'm learning about the fuels we put in our bodies that actually feed or create abnormal cells and how that in some people it can be reversed. So there are the choices I have made for myself. But no doctor told me about them. I had to do the research myself. Docs are running too scared from law suits to actually support other options.

So -- yes.....even after all of my efforts I still may have to walk the road of hysterectomy. I am not opposed to EVER doing that. But it is certainly not the first option, nor does it have to be if someone is willing to live with unknown and manage their own bodies for a time to see what happens. Doing that is not for everyone.

So this is my question....it was not until I made my decision to turn down surgery that I was told that hyperplasia can "come and go". Huh??? Then how come they made me feel as if the devil was standing right around the corner?? Then when I asked a question about that, my doc said, "Don't worry yourself about that....it's not important now". So now I am not only changing docs to find one who will respectfully walk this road with me..but also one who will give me the information that I need when I ask for it. So if hyperplasia can come and go....when it is "gone" then what the heck do I have to worry about?? If I watch for any irregular bleeding (I keep a strict calendar) and do my periodic check-ups I may just fall into the percentage of folks who get through this. And there are those folks out there!!!

And it's a good idea for all of us to start taking vitamin D3 -- it has been proven to push back pre-cancer cells. Did anyone's doc tell them about that???? If you think you see a bit of sarcasm in my tone...you are right. IT has been a fight and frustrating experience to try to live in my body under my own terms. And I don't think it should be. Not angry -- just fed up after 6 months of having abject fear dumped on me by the medical profession.

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by soingbird_kay, Jan 27, 2009
I am so confused as to why those of you who are still in child bearing age are not being offered a treatment besides hysterectomy....

I had complex atypical EH and am being treated with Megace 160mg and metformin 2000mg. It is already reduced to CEH- no atypia and hopefully will continue to improve so I can conceive. My RE has treated two patients with CEH-A who are both now EH free and pregnant.

There are options out there, ladies, but sometimes we need to seek out the treatment ourselves. Many OB/GYNs are very quick to just do a hysterectomy. Mine was trying to get me to have one. Thank GOD I found a wonderful RE who is VERY knowledgeable and current on the newest studies.

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by PattyV, Mar 31, 2009
Kathy901: I'm in the same boat, diagnosed in Feb 2009 with complex hyperplasia with atypia. I've abandoned my usual diet of alcohol, caffeine and sugar, and I"m trying to drop 30 pounds to put myself in a better position to fight the precancer without surgery. I'm set up to talk with the doctor about progesterone, even though I"m 52. Not sure he'll go for it but he sounded like it was an option if I insisted... I'd love to hear any suggestions you have for where to get good info about supplements that are medically proven to help.

If half of the women who get this do NOT go on to develop cancer, why is that. What separates us? That's what I wonder. And where do we sign up to play for THAT team.

Patty

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by bigon77, May 22, 2009
bigon77; i was found to have atypical  endometrial cells on a pap smear  i am going to have a colocspy in 2 weeks time
i had a small postmenopausal bleed 6 weeks ago hence the pap smear!  my doctor is looking at endometrial thickness
but arent atypial cells cancerous? i have read some ghastly stuff on the internet ,to the point of wanting to throw my PC  OUT OF THE WINDOW!   CAN ANYONE GIVE ME SOME ADVICE?   im petrified! God Bless all who are going through this

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by wlee9462, Jun 15, 2009
I am 33 years old. I have never had kids and have just been diagnosed with Complex Atypical Endometrial hyperplasia. I am so worried that I am not going to get the chance to have children, and that really saddens me.

Is there anyone out there who was diagnosed with the same condition and yet managed to have children afterwards?

I would really appreciate it if someone could tell me whether it's a possibility.

Also, I think this is really getting me really down at times. Most days it's ok. But sometimes I just almost fall apart.

Does anyone else find it really emotionally challenging; especially when you are trying to manage a relationship (and my own life) at the same time?

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by bigon77, Jun 23, 2009
if you have these problems have a hystorectomy Get rid of the whole problem ITS NOT WORTH THE POKING AND PRODDING AND GENERAL ANGST - Thhats exactly what im going to do God Bless you all!

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by momdecember20, Jun 27, 2009
I was recently diagnosed with complex hyperplasia with atypia.  I wanted to have another child, so my dr suggested an iud and higher dose of progestron.  I need a biopsy in another 3 mos and then again 3 months later.  I am trying to find research on this and make an informed decision.  She told me to lose weight and exercise and that it could possibly go away.  I already have a 5 year old daughter and I am happy with that.  But the thought of just giving up is killing me.  The dr. is recommending a hysterectomy if I dont want more children.  But, she cant tell me that this will progress while I am pregnant and I just feel overwhelmed right now.  Are there any good sites that provide information on this?

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by wlee9462, Jul 04, 2009
I was found to have complex endometrial hyperplasia with atypia about 6 weeks ago. I will be seeing my Oncologist for the 1st time in  few days.
I will post what info I find out after the appointment.
Best wishes to all of you ladies.
I am just trying o take it one day at a time.


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by SisterT, Jul 16, 2009
I have been dealing with CEH-A since 2003; and I still have my uterus. I can not tolerate a biopsy, so I have a hystoscopy about every 6-7 months since 2005; except 2005 when I lost my insurance I just knew I was a goner..But praise the Lord, my constant protector, since 2006 I have only had CEH with no atypia..AMEN!!! I just got married in Nov 2007 ( yes, I have waited 38 yrs for my husband..( and he 41 for his wife) and now we are trying to have our blessed one child (we hope) and I finally found a great doc who added Metformin to the Megace and I pray at after my next hysocopy ( this Aug), I will be ready for IVF (hoping in Sept).

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by wlee9462, Aug 06, 2009
Thanks Sister T for that comment and congratulations on everything!
My Oncologist told me nothing I didn't already know  ... just high dose PROVERA for 3 mths and a hysteroscopy again to check.for cell changes; hopefully for the better.
I havn't been placed on Metformin and I don't know why.
Maybe I should speak to my Oncologist??
Will write again after my repeat hysteroscopy in Sept. Fingers crossed.


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by Joywins, Aug 18, 2009
I was just diagnosed with simple and complex hyperplasia with atypia. Had all sorts of symptoms and my OB/GYN from the past would try and tell me that I was going thru menopause and to expect hot flashes soon-(at 38). I am 47 now.  I am a nurse and knew that something was not right.  They would put me on aygestin to get a period and then put me on it to stop the heavy bleeding!   Finally changed doctors-she listened to me tell her about the "gushers" I was having.  It would happen in seconds-just a gush of blood that would pour out of me.  I would either not have a period for 2-3 months or have one for 6 weeks!  She said that the gushers were a sign of a polyp and so I had a D &C-Found out I had many polyps and the diagnosis of above.   I also have a history of colon cancer on my dad's side of my family and gardner's syndrome and familial polyposis with colorectal cancer on my mom's side of my family.  I was offered two options-to take medications and wait or to have a hysterectomy. She mentioned that about 25% of those with my diagnosis already have cancer of the uterus that just wasn't detected by the D&C. So, with my family history of cancer I am choosing the hysterectomy.  I am not crazy about surgery, of course, but I don't want to worry about the possiblity of cancer either.  I am grateful that the new Doctor I went to considered my family health history when deciding the actions she would take to help me.  So,don't forget to tell your doctors your family backgound health history and consider that when making your decision.  God be with all of us!!

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by bigon77, Aug 21, 2009
Do atypical cells on a pap smear mean i have cancer? I am post menopausal  i am booked for a D+C andHystrscopy
next Thursday I am terrified about what they will find The Radiologist couldnt see the thickness of uterine lining because
my uterus is full of fibroids Can some please offer some reassurance? Bless you all!

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by SisterT, Aug 27, 2009
wlee9462, thanks and I will keep you in my prayers. I was on Provera in 2003. Now, I am on Megace & Metformin and I am praying for a good result at my next d&c+hysto in Sept - so that IVF can begin ASAP.  When I was on Provera, I think ( I am old and do not rely on my memory) I took it every day, and then at the time the news about hormones & breast cancer & menopause hit the news ( i was very, very, very concerned). Now, I take the Megace for the first 12 days of the month. And, I have lost 20 lbs  by exercising.

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by SisterT, Aug 27, 2009
Bigon77 - atypical cells on a pap smear mean that there is something going on with your cervix. It does not mean absolutely that you have cancer. Try to relax. They will not be able to tell you anything until they get the pathology results back. I do know that Fibriods ARE NOT CANCER! There is a laser procedure to remove them, I think it is called ablation. And, really the best way to see our uterus & cervix is a D & C, and during the hystocopy they can remove the fibriods with gentle scrapping or a laser depending on your doctor.  I know today is the day of your procedure, but maybe this will help as you recover and wait for the result. Gosspeed.

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by SisterT, Aug 27, 2009
Bigon77 - Godspeed!!!!

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by mvona529, Aug 27, 2009
Subject:  Looking For A Doctor Who Would Prescribe Megace & Metformin for My ACEH

Hi Everyone,

In May 28, 2009 I am told I have Atypical Complex Endometrial Hyperplasia.  I would like to try Megace & Metformin BEFORE I resort to a hysterectomy.  However, all my doctors are INSISTING that I have a hysterectomy -- even though I have borrowed every book from my local libraries and googled like a mad woman and found out that trying Megace & Metformin is a sound and effective alternative treatment BEFORE resorting to hysterectomy.

My insurance is good for the ENTIRE USA.  If your doctor is giving you Megace & Metformin for ACEH, may I have his or her phone number and contact info?  Maybe he/she still have time for a new patient?  (I will forward my entire medical file or whatever info necessary.)

PLEASE HELP!!!!  THANK YOU!!!!

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by mvona529, Aug 27, 2009
By the way, my personal email address is:  ***@****.  Thank you, again.

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by mvona529, Aug 27, 2009
Ooooops, my personal email address can't be shown via this website.  Would  you please just lick on mvona529 and leave me your contact info? Thank you.  Margaret

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by wlee9462, Sep 11, 2009
momdecember20, I am pretty much in the same boat as you, except I havn't had a chance to have children; I hope you are successful in treating this condition and adding one more child to your family :-)
I was found to have complex hyperplasia with atypia in May 09.
I just had my 1st repeat hysteroscopy D&C after been in Provera 200mg everyday for 3mths , I've lost 9 kils (19 pounds) -> They found no changes as yet. I guess on the plus side, that means it's not worse!?
I have to wait for 4 weeks for another apptmt with my oncologist ... I will post more info when I know more.
Good luck to everyone.
Thanks for posting; it makes it a little easier knowing I am not alone.

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by momoffourgirls, Oct 12, 2009
I am a 46 year old mother of 4. I have been suffering between extremely heavy periods and irregular periods for about 4 years. I finally changed GYN about 4 months ago and now I have just been diagnosed with complex endometrial hyperplasia with atypia three days ago. My Dr. recommended a hysterectomy. The hyperplasia was found after a D&C that was done because of thickening of the uterus and heavy periods. I had already had ultrasound, vaginal ultrasound and a biopsy of the uterus and neither of them picked up the hyperplasia. I am so glad that my Dr. recommended the D&C. If not, we would not know about the hyperplasia. From what I have been able to find out, complex endometrial hyperplasia with atypia is the fourth stage of hyperplasia before it actually turns into cancer. I am going to take my Dr's advise and go ahead and have the hysterectomy. No sense in waiting to find out if I would become part of the 25 % that turns into cancer. I am having my surgery In about four weeks.


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by ixchel, Oct 14, 2009
I have been recently diagnosed with hyperplasia atypia and had a D&C yesterday...no results back yet ofcourse but my gyno/gp/hospital doc who performed the D&C/pathologist all direct me towards hysterectomy.  I am 45 and desperately trying to conceive succesfully (I had 9 miscarriages and no succesful pregnancies so far). The hyperplasia atypia was only discovered because of fertility investigations.  
Needless to say I am stressed out , have a humungous bloodpressure problem now and find myself surrounded by doctors who automatically direct women with hyperplasia to getting a hysterectomy.  
I read that in the US 12 women are getting a hysterectomy every TEN minutes! and out of those 12 women NINE do not tick all the boxes of really needing one!    
Do not get me wrong; I respect everybody who is making or has made the decision to have a hysterectomy, but I am just wondering whether the whole demeanor of the medical profession of spreading fear about hyperplasia automatically becoming cancer in at least 25% or more (that still is 75% NOT becoming cancer!), is contributing to the fact that there are a whole lot of people out there that could have benefitted from alternative treatment, lifestyle advice etc rather than the whole stressfull emotional turmoil they are or have been going through.
Any advice is welcomed about alternative treatments, hollistic treatments , anything.
It is good to know that one is not alone in experiencing this ! Thank you all so much for sharing and I wish everybody Health and Peace !

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by lsjrandy007, Oct 21, 2009
Same deal at the age of 52 got tired of bleeding ALL the time really affects life,love, and my clothes.  Complex Atypical hyperplasia.  GYN-ONC appointment are suggesting hysto, will most likely do it.  Mom died of ovarian cancer, don't want to deal with this non-sense and will not take hormones to much risk there as well.  Really wish I didn't have to do this but gotta deal with it.

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by regarei, Oct 21, 2009
I was diagnosed with Complex  hyperplasia with atypia 3 weeks ago. I am 31 years old and have no children. I talked to my ocologist yesterday and he wants to do a D & C. He says if I don't have the beging stages of cancer I am almost there. He gave me 2 choices he said I either get a hysterectomy or suggested that losing anywhere from 50-100lbs would help my problem. I weigh 276lbs and I am diabetic have been for the past 2 years. I am just wondering if any of you have advice or can recomend any sort of diet that may have worked for you.. I've done weight watchers and atkins before but can't seem to stick to any of it.. I an currently on provera and I feel it makes me angry and impatient. I really hope this goes away I am in soo much pain and bleeding constantly. :(

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by Shellie395, Oct 23, 2009
I was first diagnosed with complex Atypical Endometrial Hyperplasia about 12 years ago and now am on my 4th recurrence, I just found out yesterday. My Dr is giving me an option if I want a second child, fertility meds to get pregnant NOW or hysterectomy now. I have a 22 month old boy and he was the miracle of my life. We had given up after 13 years of trying and BAM there he was. Now I am not ready for another one. I have to work full time along with my husband to support the one we have now. I am afraid to make a decision now that I may regret in two years when we MAY be more financially secure to have a second. Do I play Russian Roulette and take the chance? or be blessed with what I have and have the procedure done? I am blessed but and afraid of forever at 40 years old.

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by LadyJag, Oct 31, 2009
I am 31 years old and was diagnosed with Complex Hyperplasia with Antypia in June 2008, in June 08 I had a D&C and was told that since I wanted to have children my only option would be Clomid, or IVF. I waited to see if my period became normal after the D&C and noticed that I either had a prolonged period or non at all. I spent most of the year either excited about possibly being prego or crying because I thought their might be a bigger problem. In May of 09 I was told that I have PCOS and that even after doing the D&C in 08,  I still had Hyperplasia but not complex antypia. My doc has scheduled me for yet another D&C and Laparoscopic. I feel hopeful and fearful of what my next post op will bring. Never the less, I believe heavily in prayer and that information is power. It is sad to say but MOST Doctors are too busy to care. Make sure your not working with one of them. God bless you all and good luck.

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by Marge714, Nov 08, 2009
I am 36 years old and was diagnosed with complex Hyperplasia with Atypia in May 2008.  After 3 months on Megace I had a D&C in August 2008 and the doctor put in the Mirena IUD.  There was no hyperplasia found during the D&C or one subsequent endo biopsy.  I went the D&C route to preserve my chances of having more kids (was engaged then - that ended about six months ago).  A year later I have a new doctor and she is suggesting a hysterectomy since right now I have no plans on having more children.  She's saying there is a 50% chance of cancer with the hyperplasia (doctor #1 said 25%).  Not sure if hysterectomy is the answer.  I feel like it's trading one issue for others from the hysterectomy/immediate menopause.  I have had spotting and cramping even with the IUD in place and don't know how long I can continue wondering when/if cancer has started and whether the biopsy caught it.  Might be better to have the hysterectomy just for the peace of mind...

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by Cheloconnell, Nov 10, 2009
I am 36 years old and was diagnosed with Complex Hyperplasia Atypia via D&C at the beginning of October 2009.  I started with heavy bleeding for about a month and large amounts/clumps of tissue as well as severe pain.  I have PCOS, bicuspid heart valve, hypertension controlled with Benicar, two benign lumps removed in April 2009 and just found out I have another large mass in my right breast.  I have two boys who were each conceived while taking Metaformin at that time to stimulate ovulation.  My GYN scheduled me for a hysterectomy on 12/17/09.  She explained that she will not know if it is cancer until she removes everything, but even if it is, it should be easily treatable.  She wants to potentially leave my cervix in due to my age and weight, but I want it all out to be on the safe side.  I found out after my diagnosis, there is an extensive family history on my father's side of cancer - uterine, ovarian, kidney, breast, liver, digestive tract, etc..  I received a name of a GYN/Oncologist and his secretary basically said my GYN can handle my case and if it was an extensive one, my GYN refers over to his office.  She said he would see me if I really wanted but it would be a while before she could get me in.  She claimed she would call back today, but nothing.  I am very frustrated.  It is scarey enough to be going through this, but to have a doctor not want to see you only adds to it.  Because of the extensive family history of cancer, I thought seeing an oncologist would be the best thing for me.  I am on a roller coaster of emotions and to add to it, I need to worry about my breasts again.  I have an ultrasound coming up for my breast this Thursday and a 6 month post surgical check with the surgeon on Friday.  I cry even thinking of the possibility of not seeing my little ones grow up and who they will become, if they will marry and have kids and just even being able to retire one day and spend time with my husband.  Thinking someone else may take my place in my husband and kids life one day really upsets me as well.  I am so sad and really have been quitting emotionally and mentally lately to prepare myself for the possible end.  I hate to think this way, but my sister died when she was 15 and my husband's sister died on her daughter's 2nd birthday in her early 20's.  I am just so sad right now and praying to God he will save me.

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by wlee9462, Nov 10, 2009
Dear all,
I am 33 years old. Was diagnosed with Complex Atypical Hyperplasia back in late May this year and was placed on Provera 200mg daily. I have had a D&C review in September; and there was no change. It did not worsen and it did not improve.
I have not had children and am very anxious at times about the preospect of not being able to.
I have been thru all the ups and downs that you ladies have mentioned and still have bad days every now and then.
My Oncologist told me that we will be repeating a D and C in early March or end of Feb 2010; if it's still the same, he will want to have a serious talk with me re: hysterectomy. I am working very hard to try and stay positive as well as exercising and watching diet to try and lose some weight.
So far ... so good.
My heart goes out to you all to have to go thru this. I wish you ladies all the best.
Please keep posting. It makes me feel like I am not in this all alone when I read your journals.
Sincere good wishes to you all for good health.

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by tcagle, Dec 17, 2009
I am 37 years old and I was diagnosed with Complex Atypical Hyperplasia this week. My Fertility doctor and Oncologist have yet to mention a hysterectomy as an option. They put me on Metformin, Levothroxin and Megestrol. I dont have to go back to get another biopsy until February. My Oncologist thinks that I can start fertility treatments as soon as March since my husband and I are wanting a child. I did not even know that hysterectomy was something that would come up until I started to do research online. I am overweight and neither doctor mentioned that I needed to lose weight either. My husband and I are still going to work together to lose weight anyways.

However, reading this board - it seems that this infliction happens to mostly women in their 30s mostly and that most doctors dont want to even try to work through this with medication. I am thankful that both my doctors are trying everything else before they even approach the subject of taking my chances of having a baby away.

I live in Atlanta and my doctors are with the Emory HealthCare systems in Midtown.

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by Pam378, Dec 31, 2009
Hi, I am 53 and post menopause. I have had irregular bleeding on and off for about a year. I had a vaginal ultrasound yeasterday. Also had my routine pap smear on Dec 14th. Usually results are in the mail by now. The woman doing the ultrasound said my uterus lining was abnormally thicker. Any thoughts on this? Thanks so much

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by nadanadalimonada, Feb 15, 2010
Hi,
I was diagnosed with Complex Hyperplasia with Atypia 4 yrs ago, the first doctor had me down for a hysterectomy, at a local hospital before I had even consented, which I didn't, I wanted a second opinion, the second doctor verified what the first had said was correct, and he advised that I have a hysterectomy, I am 65 and had, had a stomach stapling which causes a large amount of inner scaring, since the 2nd doctor agreed that might cause problems he said we could wait and see, that it could turn cancerous or it may never go any further.The second doctor would have been just as happy as the first to sign me up for surgery, and if it hadn't been for scar tissue he wouldn't have said let's wait and see. So far so good. Don't let anyone frighten you into having surgery until your sure that that's what you really want to do, Doctors can be very forceful, and always seem to have an air of impending doom, until you start asking them questions or other problems enter the equation. Although hysterectomy's can be a life saver there is a down side to any surgery. Please get all the facts, There are more options today, more then ever before, so don't just settle, find a doctor that knows the latest facts and treatments, and one that isn't just pushing you into having a hysterectomy because that is his method of taking care of the problem. Those sweet, kind. doctors are often times not up on the latest treatments, even though they have great bed side manner.

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by KBB0203, Mar 04, 2010
I am 35 and I have just been diagnosed with Complex Hyperplaxia with Atypia. My doctor did an endometrial biopsy,which came back abnormal, which led to a DNC.

My grandmother never had any pains or problems and had to have a total hysterctomy and was found to have uterine cancer. Her uterus was pretty much eat up with cancer. My mother had a hysterctomy from cervical cancer and when they performed the hysterctomy they found she was covered in endometriosis.

Has anyone researched their family history to see if anyone in their family has had problems with this. I have talked to several women who have gone through similar diagnosis, and more than one person in their family has gone through the same thing. So is it possible that some of this is hereditary?

I have one child, and my husband and I had tried to have another a child this past year, but failed. We discussed this fact long and hard with one another, and his statement was that he would rather have me well than have any more kids.

My doctor gave me two choices 1) take the high powered Megace pill which he said would cause me to have PMS, bloating, and would probably gain weight because I would be constantly be hungry or 2) have a hysterctomy and not be worried that even if I take the pills it still might come back. The pills only have a 20% chance of working, where as the hysterctomy ensures I want have any more problems.

My husband and I both are ok with not having any more kids, I would rather be alive and enjoying life than constantly wondering if I am going to be ok.

I also asked the doctor this 1 question, "If this was your wife or mother what would you suggest/or tell them to do?" He said, I would have them do the hysterctomy.

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by bbcolorado, Mar 17, 2010
I am 54 years old and have  just been diagnosed with Complex Hyperplaxia with Atypia. They did a hysteroscopy and D&C two days ago. I am anxiously waiting for the pathology report. My gyno is recommending a hysterectomy. I thought I was in peri-menopause but the doc's blood work indicated at that point in time I am emnopausal.

I am terrified about having the hysterectomy, jut the D&C surgery has me an emotional wreck. I am also wondering what I have done wrong to have this happen to me.

I pride myself on being healthy in diet, nuritional supplements, and exercise. Why is this happening?

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by G_Rogers, Mar 17, 2010
I just found this website, of course it is too late for me.  I'm 32 years old and I was found to have Complex Hyperplasia with Atypia in February of '09, I have no children.  I was placed on the Provera like many of you have stated and I had a repeat D&C in June "09, the results were better - hyperplasia but no atypia.  I had also lost 25 lbs. because overweight women have more unopposed estrogen.  In order to entirely get rid of the abnormal growth I was put on Megace for another 3 months with a repeat D&C in Oct. '09.  Unfortunately at the point the atypia had returned and I was given two choices, Megace at 4 times the dosage or a hysterectomy.  I live in Alabama and was seeing an Oncologist at UAB who I really like but I got a second opinion from a doctor at Sloan-Kettering in NYC.  The Sloan-Kettering doctor said that with a high dosage of Megace I could end up damaging the uterus anyway and both doctors saw the hysterectomy as the safest option.  I had off the charts Stage IV endometriosis in Feb. "09, I had an abnormal pap smear in Nov. '08, and I just didn't want to be worrying about cancer everyday.  In Nov. '09 I had the hysterectomy, hoping for removal of the uterus only but the endometriosis had come back so bad in 8 months that the ovaries were "glued" to the uterus and had to come out as well.  THE MOST UPSETTING part is when my pathology came back there was NO HYPERPLASIA OF ANY KIND.  Having no hormones has effected me emotionally, I can't remember things in the short term, I just had my first UTI which is apparently common in women with hysterectomies.  Was it worth it?  Did I make the right decision?  I have another doctor I trust and posed the same question and he said you would have been dealing with it the rest of your life and he has had patients that waited too long and it developed into cancer.  I think the saddest part is that medical science isn't advanced enough to tell you if you have cancer because they are only scraping the uterus and they can't biopsy a muscle.  They can't tell you 100% if you do or if you don't so there is no one at fault basically the best decision was made at the time with amount of information available.  

To       wlee9462,       I see from your last post that you probably have a big decision coming up and probably my post has only added to the confusion.  If you do have to have the hysterectomy, I would suggest having your hormone levels checked before the surgery so afterwards if they have to take your ovaries you know what your baseline hormones were.  My Mom just told me about this book -The Book is "What Your Doctor May NOT Tell you about Menopause by John R. Lee, M.D. with Virginia Hopkins - I haven't read it yet but he apparently downplays the risk of endometrial cancer.  But is he right?  I will definitely say a prayer for you that you will know what decision is best.  I tried to keep my sense of humor it was the only thing that kept me sane I think.  I even asked for a birthing room because I know they are pretty swanky, but I didn't get one, I just got that sad look from the nurse, which I hate the sad, pity looks.  

As for never being able to have children it is definitely hard and you have to have a good support group because I'm still at the age where all my friends are having children.  My mom was adopted and so I look at that now as an option for the future.  Many women are unable to have children even if isn't through hysterectomy and it is a grieving process, but I'm alive and while I still have hormone imbalance issues I have hope that as I become more educated that I can alleviate those.  
This is a website about hysterectomies - it highlights the negative aspects of hysterectomy.  There are so many of them performed nowadays and many of them unnecessary (I'm not talking about the ones for cancer) so that is why the site has a negative tone but it does have information that I think people should see before the making decision.
http://www.hersfoundation.com/

I wish they would put as much money in uterine cancer research as they do breast cancer.  There is no medicine that can replace your ovaries, you just don't realize how much they do for you.  

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by G_Rogers, Mar 17, 2010
bbcolorado,
          Sorry, I just read your post, I hope everything works out for you.  I had the da Vinci hysterectomy which wasn't really that bad I promise.  I only had to stay one night in the hospital, and that evening after the surgery I was already eating rotisserie chicken and dessert!  Two days after the surgery I was taking advil only for the pain.  I hope your outcome is that you don't have to have the hysterectomy but if you do, hopefully you will be surprised with how quickly you recover.  Take care

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by JoyGP, Mar 17, 2010
To G_Rogers: I too live in Alabama, and I would like to share with you that I have been seeking alternative treatment for my hyperplasia the past six months. Although I have not had a hysterecomy, I have been working with two professionals that have assured me that they have helped many women with hormonal issues. They are: master herbalist Rhonda Dial (Go Natural Health Food Store, Trussville, AL 205-655-9155) and Dr. Bob Apol (Greensprings Chiropractic Center, Homewood, AL 205-251-1251). Maybe they can be of help to you too.

My best to all the women who have posted to this blog. I just found this site tonight and your stories have encouraged me. My mother had uterine cancer which makes me even more concerned about this diagnosis.

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by red1965, Mar 18, 2010
I was just told by my dr that  I had Atypical Endometrial Hyperplasia which  was detected during my fibrous removal ... It is really scary...I  am in my mid 40 ... and I am planning to get pregnant... I am afraid with my age it is not easy to get pregnant and secondly I am still recovering from the fibrous operation.  Before I had this Atypical Endometrial Hyperplasia, the Dr said  I can only plan for pregnancy after 1 year and am afraid that the pre cancel cell will develop to cancel ..... the Dr advise me to go for hysterectomy.  Do any of you when through this having pregnant with the Atypical Endometrial Hyperplasia.  Is this possible?

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by G_Rogers, Mar 19, 2010
As I said above I don't have any children but my oncologist actually said to me that a pregnancy could help with the hyperplasia.  When I was first diagnosed with Atypical Endometrial Hyperplasia I was put on a progesterone, which is what you produce a lot of during pregnancy.  Obviously I'm not a doctor but maybe you could ask your oncologist about that. When I was first diagnosed the doctor gave me two choices - hysterectomy or trying the progesterone (provera).  He said that he couldn't tell me definitively if I had cancer or not.  Endometrial Cancer from everything I've read is one of the very slow moving cancers so with that and the fact that I was 31 at the time I went with the provera treatment.  My followup D&C was just hyperplasia no atypia.  I detailed my experience above.  I hope everything works out for you.


To JoyGP: Thanks so much for your response.  I have been to see Rhonda a couple of times in the past five years and actually went back yesterday to get some progesterone cream.  Hopefully that will help!  Good luck with the hyperplasia, not having the atypia is supposed to be easier to treat and less likely to develop into cancer so at least you have that going for you.  


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by SusanRN25, Mar 27, 2010
I was just diagnosed yesterday with Complex Hyperplasia with Atypia.  I had a D&C 2 weeks ago after seeing my OB/GYN due to severe bleeding.  That was my pathology result...what a nightmare.  My doctor knew that my husband and I were planning to try and get pregnant for the first time ever in April, after our 4th Anniversary.  Now this.  He started off the post-op visit with telling me the results and that if I was not wanting children, or past childbearing years, he would suggest I have a hysterectomy.  However, since my husband and I desperately want children, he suggesting medication therapy first.  I took my first Provera dose today.  I'll take it continuously for 3 months and then have a repeat biopsy.  My doctor has been really great.  He tried to give me a pep talk saying "if things with the medication go well, we will do our best to get you pregnant right away, if it doesn't, it'll be another 3 month bump in the road".  I'm so glad he's understanding about my desire for a family.  

This has really made me regret waiting to start a family, but we had no clue something like this would come up with me only 35....what a lesson I have learned.  Anyway, I am also very thankful that I came across this forum so soon after being diagnosed.  I have read many of your posts and it has been a comfort to here about some of your experiences with opting out of the hysterectomy route.  I will have to ask my doctor about the Megace and Metformin therapy.  He didn't mention that.  I'll take all 3 together if I have to!  :)   Now, I just need to loose about 25 lbs and learn what supplements to take to combat the pre-cancerous cells.  I have several written down thanks to your posts!  Thank you!!

Anyone who went the hysterectomy route while still in childbearing years ever consider egg extraction for possible surrogacy?  It kills me to think of my life going by and never being able to look at my child and see my smile or my husbands beautiful eyes!  We will adopt if we have to if a hysterectomy becomes my only option, but I have had a dream of having my own child for so long, I can't imagine having to let that go.

wlee:  We are in the same boat, girl.  Let's pray for each other!



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by yy451, Apr 01, 2010
I also have the Complex Hyperplasia with Atypia. Fortunately it was discovered by my Repro Endocrinologist in the last couple of years while I've been undergoing fertility treatment. My problem is that I have blocked fallopian tubes which leads to unopposed estrogen and thus the CHE with Atypia. have been taking 160 mg of megace for the last three months and had a biopsy recently which resulted in me having to take megace another 3 months. I was wondering how others are coping with the megace?

The weight gain aspect of the medication has been very difficult for me to manage. I have probably gained 15 pounds in 3 months and am pretty much desperate not to gain anymore. The irony of course is that being obese contributes to the condition and yet the medication stimulates your appetite!? Someone, somewhere must be having a good laugh over that! : ) Anyway, any advice about how to control your appetite? I am AMAZED by the woman above who was able to actually lose weight while taking megace. That's just incredible! Exercising on megace is a challenge, I've tried but I'm I feel a high amount of fatigue the next day or afterwards.

I'd love to hear any of any coping mechanisms for those who are taking megace! I am also so inspired by the strength of the women on this board!

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by summernight, Apr 24, 2010
I was diagnosed with complex atypia hyperplasia 4 weeks ago, after my ob/gyn performed an endometrial biopsy.
This week I underwent a D and C in hospital. My doctor has mentioned the possibility of hysterectomy. I am a 53-year-old
woman and had one child when in my 20s. I was taking prometrium and cyclamin for a period of 7 years, from 2002 until late 2008. In January 2010 I experienced abnormal bleeding, underwent the biopsy and was diagnosed with this condition.

I want to know if there are women my age who were diagnosed with complex atypia hyperplasia whose doctor placed them
on hormone treatment. Was it successful?

Also I want to ask if women chose to have a hysterectomy and were later told that cancer was found in the uterus?

My final question to anyone diagnosed with complex atypia hyperplasia is how long did it take to get the pathologist report after you underwent a D and C or biopsy?



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by summernight, Apr 24, 2010
Hi again,

I have been reading medical articles about this condition. These point to a progression rate of 30 % to cancer. However one article stated that complex atypia hyperplasia is often over-diagnosed. Also a D and C cannot definitely rule out malignancy. According to one article, cancer was not diagnosed with some D and Cs, but was only detected AFTER the hysterectomy in some patients, upon examination of the uterus.

I hope I have not confused anyone. Has anyone experienced remission of complex atypia hyperplasia?

Have you undergone a hysterectomy only to be told that cancer was detected after the operation, when it was not detected by a D and C?

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by G_Rogers, Apr 27, 2010
I tried to respond already summernight but it wouldn't go through so I'm shortening my answer this time.  It took about 3 days to get the results for the D&C.  You can read my experience further up (not to far, it was this year).  You are right about everything at least from my experience - they can't tell you if you do for sure have cancer just from a D&C and I was told they can't biopsy a muscle and that the PET scan hasn't been found to be reliable to detect uterine cancer.  My complex atypia hyperplasia reduced to hyperplasia with progesterone and then came back while still being medicated so I had the hysterectomy at 32.  I will tell you that my doctor said when I first met him that if I was in my fifties and had all the children I wanted that he would just perform the hysterectomy.  I'm not trying to sway you one way or the other because it is hard to make a decision when they can't tell you definitively.  In respect to the CAH is it really there, I asked my doctor the same question and he said it was (what can you do?) and I said well did they find one cell or what and he said they don't look at it like that, they just look to see if it is there.  I guess because it will continue to replicate incorrectly if there is any there at all.  
It is a tough decision, I know it was for me, I don't have any children.  I really hope your results come back good and soon.  Good luck.

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by summernight, Apr 27, 2010
Hi there G_Rogers,

Thank you for sharing. I am still awaiting the results of the D&C that took place last Wednesday. I talked to my ob/gyn office
today and she is sending me for an ultrasound. From what you have described, as well as my own research, it appears that
cancer cannot be diagnosed until it has become invasive. What did the NYC doctors say about this?

Did you have adverse side effects from Megace?

How long did it take to recover from the hysterectomy? Is it the case that your CHA regressed and them came back?

take care
M

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by G_Rogers, Apr 28, 2010
Hi summernight,
         I didn't actually visit the NYC doctor to speak to them I sent them my treatments at the time and the results.  They said that a hysterectomy was what they would recommend as well.  They said if I went with the higher dose of Megace that I could end up damaging the uterus anyway and be unable to have children which was what I was hoping for in the future.  My biggest concern was even though I really trusted and respected my doctor I just needed some extra validation and they said from the treatment to the diagnosis was everything they would have done.  
         As for the Megace, I'm no lightweight to begin with, so for me to find out in high doses it sometimes used to treat anorexia was upsetting.  At the time I was doing weight watchers and I actually lost more weight on the Megace and didn't notice a real change in my appetite.  I'm pretty sure estrogen is a growth hormone so for the medicine to be trying to counteract the estrogen in my body may have actually helped me.  It probably really depends on the amount you are taking.  
         I had the da Vinci hysterectomy with 5 smallish (1 inch long) incisions and the recovery was pretty quick.  I had the surgery on a Wednesday and by Friday was on ibuprofen for pain.  Part of that is because my intestines to appreciate the heavy pain medication.  While this may be too much information, definitely take a stool softener ahead of time, I really wish someone would have told me that.  I was out of work for a month mainly because of the scheduling of the follow up visit.  I also have an amazing mother who took very good care of me.  The biggest adjustment is losing the ovaries but this isn't meant to be rude but since you are older than me this affect may not be as great on you.  
         In Feb 09 they found CAH, I was treated with progesterone and in June '09 they found only hyperplasia, and then I was treated with Megace (which I believe is a form of progesterone) and in Oct '09 the CAH came back.  In the words of my oncologist, he said "It concerns me that what underlying process is going on causing it to come back while on pretty strong medication".  
         Seems like your results are taking awhile, I know the waiting feels like an eternity.  I'll be praying that you get good news!


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by summernight, Apr 28, 2010
Hi G_Rogers,

Still awaiting the results of D&C, called the ob/gyn's office today and was told it could take 10 days. I am trying to understand as much as I can about the various possibilities that could evolve once the results are available. I am somewhat
confused about why you were in touch with an oncologist when cancer was not diagnosed. Actually the possibility of referral to an oncologist was mentioned last week by the ob/gyn who performed the D&C.

I am in an unusual situation because I am now dealing with a new ob/gyn as my regular ob/gyn, who I have seen for the past 25 years, stopped doing surgery last year. So, when the CHA was diagnosed in March, I was referred to a new ob/gyn.
A thought that has occurred to me while reading information on this condition is if doctors are reflexively recommending
hysto so to avoid malpractice claims later in the event cancer occurs.

What I have read is that removal of the ovaries can leave a patient at a higher risk of heart problems. As with everything the risks and benefits have to be considered. As for your advice concerning the softener, I was aware of that from my prior
experience recuperating from a C-section.

Could you share a little information on how you got in touch with the doctors at Sloane-Kettering? Does the patient pay for this consultation, is it covered by insurance?

I understand this was a traumatic experience for you due to your family aspirations. I am worried because I now have a disability that will complicate any major surgery. As well I'm a size 16, so I have extra pounds on my frame.

take care
M

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by G_Rogers, Apr 28, 2010
Hi summernight,
        I left you an email at your medhelp account in case people are tired of hearing from me!

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by dsc1312, May 13, 2010
BY DSC
     I HAVE COMPLEX HYPERPLASIA WITH ATYPIA OF UTERUS. I SUPPOSE TO HAVE A HYSTERECTOMY TODAY BUT FOUND OUT I AM PREGNANT. I AM 50 YEARS OLD AND I'M WONDERING WANT THE RISK ARE.

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by realestatediva, May 16, 2010
i have previously been diagnosised with complex hyperplasia with atypia w/a uterus that is retro. Had a D&C in 2007...started taking birth control pills [apri 28]...Now in 2010 i have fibroids and polyps. Dr. has suggested a hyster. I'm 37 with no kids....Need other options please...

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by summernight, May 17, 2010
Hi G_Rogers,

Just dropping by with an update. As of this Wednesday, it will be 4 weeks since
my D/C. STILL no path lab report. The wait times here are ridiculous. Also the
hospital called me last week with an ultrasound appointment- in August!

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by G_Rogers, May 18, 2010
Hi summernight,
             I'm glad you posted again, I have been wondering how you were doing.  The 4 weeks is a ridiculous timeline, I had no idea it was that bad.  Your doctor's office can't do the ultrasounds?  Did that say what they were looking for in the ultrasound?  Have you had one recently?  I used to have the transvaginal kind but not through the oncologist through my regular doctor because that is how they found the cysts (non-cancerous) on the ovaries.  I hope you hear something soon, I wish you could come down here to see a doctor.  I pray everything turns out well for you and that your results come in soon.  Take care!

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by carolj1969, May 25, 2010
hi to all,
i was 40 yrs old, when i was diagnosed with complex hyperplasia with atypia. my OB/GYN suggested hysterectomy right away.i was very devastated since i just got married and my hubby is 12 yrs younger than me. he really wanted a child and so do i.i consulted a 2nd opinion, 3rd opinion and 4th opinion.these three suggested that progistin therapy might clear  the hyperplasia. so i was on megace for 8 months. i have d and c 4 months after i started the megace, pathology result: persistent hyperplasia with atypia with partial response to progistin.now i'm 41 yr old, and just had the d and c after 8 month of megace, pathology result:bordering the stage 1 in situ.our hope for having a child was gone.after treatment of megace it got worse. so i have no other option but hysterectomy. i'm scared of surgery but my GYN/ONC assured me that it would be less pain of surgery since he will do robotic type of hysterectomy,which is not an open type of surgery, it would be like a laparoscopic surgery ,and will be shceduled soon. .now, me and my husband have accepted my condition,and important thing is to live life longer and still be happy together forever.God bless to all of us, who was diagnosed with complex hyperplasia with atypia.
by:carol j, 1969

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by jo249, May 25, 2010
Wow - I am really glad to be in Canada with good medical service.  I also had a D&C and after 5 days the pathology came back with endometrial carcinoma.  A week later I had a radical hysterectomy but I am 54 so no more kids anyway.
Pathology following took 7 days and no spread to cervix or ovaries.  I have a followup in 3 weeks at the cancer clinic but it looks like no treatment needed - radiation or chemo.  However they did not test the lymph nodes.  It was 1B grade and only 3 cm into the myometrial.
3 weeks tomorrow from surgery and wound still healing.  Guess I was lucky!!
Have the surgery and don't wait!!!

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by summernight, May 30, 2010
Hi G_Rogers -

I finally received word from my ob/gyn last Wednesday that the path lab report came back as non-malignant.
The ob/gyn has sent me for an ultrasound which is booked for Aug. 18 at the hospital - that's how booked up
services are here where I live. I'm looking into paying to have it done at a private clinic. I see my ob/gyn again
on June 15. When I talked to him on the phone he didn't mention anything about the atypical hyperplasia.
Thanks for your support; I'm hopeful that our long wait for medical results hasn't put my health at risk.

Talk later,
M

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by Serena65, May 31, 2010
I was diagnosed with complex hyperplasia w/atypical at 38.( I had severe bleeding and a biopsy.   I was told to get a hysterectomy by the first doctor.  I insisted he start me on Megace immediately.  (research as much as you can!)  I got a second opinion from an excellent doctor. He removed a large polyp and continued treatment for 6 months on Megace.  The new doctor did a D and C and discovered all hyperplasia gone.  I am on provera and have yearly ultrasounds but I am 44 and hyperplasia free!  Get a second opinion and do your research!

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by Hollygolightly27, Jun 06, 2010
I was told I have hyperplasia, (I don't remember if they said atipical) and I am now 53 and I don't mind losing my uterus, in fact, I'd like them to give it to me so I can run it over in the parking lot!!  YEARS of bleeding, had a ablation in 2007, made it WORSE. However, I want to keep my ovaries. I don't want to go through the NUCLEAR WINTER of no hormones at all, by losing my ovaries. My Doctor said to be safe, they should remove my ovaries.

I hear everyone on this board saying they had or will have a hysterectomy. Does that mean total?  Are you keeping your cervix? Ovaries? I have been reading that the ovaries DO put out hormones of estrogen and even testosterone way after menopause. So, removing them will remove that possibility and the benifits of these natural hormones.

Should I get the ovaries out too?  I have a whole week to decide... surgery is upcoming!  

SOS!  PLEASE ADVISE!  

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by G_Rogers, Jun 11, 2010
Hollygolightly27,
          I'm by no means an expert but no one has responded to your SOS so I wanted to at least give my experience.  By the way I loved the  "run it over in the parking lot" part that means you have the right attitude - we all need a sense of humor when it comes to this stuff.  As for the nuclear winter (another great description) yes they are not fun - think about having that at 32!  For me "hysterectomy" that meant everything - they took the uterus, ovaries, and cervix; I was left with a "cuff" as they described it to me.  I was told that I would only need to be on estrogen that my adrenal glands would provide the testosterone - in my case that isn't so.  I take estrogen as well as testosterone now and I have read there are benefits to continuing a lose dose of progesterone even though I'm not on it yet.  As for natural you are right the pills don't replace the way you used to get it for free.  All these questions about receiving hormones in pill form, pellet form, or cream form who's to say which is really the best?  If you could I would request a complete blood work up on your hormone levels - all of them just so you have a baseline.  I wish I would have had that.  As for the choice the only thing I know is what your doctor probably already told you after the age of 45 I believe they consider the ovaries to be more of a liability for ovarian cancer.  Now some websites express outrage over the fact that women are "castrated" far too often.  I don't think I helped at all, it is such a tough decision, and I hope you will be able to find peace in the decision you make.  Good luck with your decision and your surgery.  

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by Hollygolightly27, Jun 12, 2010
Thank you for responding G Rogers, I kept looking if anyone responding and I appreciate you doing so. I went to the Oncologist yesterday, she basically said NO!  I sat there just about begging her and tearing up to keep my ovaries... NO!  No estrogen for you!  Even though I don't even techinally have the endo cancer yet, it's just pre cancer cells. She said she could be sued for leaving ovaries and even the cervix. So, I've been crying ever since. Today I feel better, I figure I am resourceful and willful, and I can "get me some" of that there testosterone cream!  LOL!  And slather it on after they clean me out like a chicken. At least that will give me some "UMPH" of hormones, and the little bit of fat on me will provide some estrogen. My sister survived with no ovaries, I can do it too I suppose... I have had these strange feelings like I'm looking at women on the street, even the older ones and I keep thinking "she probably still has her ovaries" and that one still probably has her natural hormones. I just feel sad. I am also afraid of the crushing depression I am imagining will be with me when I wake up "ovary-less" - but I don't want to think about that now. I guess I should just consentrate on saving my life and not worry about such silly things.

Thanks again for responding, I appreciate it.

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by yogiandmallie, Jun 16, 2010
I am 37 years old and I was diagnosed with complex atypical endometrial hyperplasia in '07 from a D&C, then i was put on provera for a month.  Went through 2 ivf cycles with no luck.  I was re-bx'd in Jan. of '08  and CAH had recurred.  I was then put on Megace 80 mg.  for 6 mo.  Two follow up bx. showed no hyperplasia.  Have been waiting on a donor egg as i have decreased ovarian function also.  Did another follow up bx. in April '10 and was diagnosed with CAH bordering on adenocarcinoma this time.  My ob/gyn has recommended a hysterectomy and referred me to a gyn oncologist.  I had an appt. with her last week and she also recommended a hyst. or i can have a D&C to be sure there is no invasive carcinoma there and if there isn't  that i can try the megace again at a higher dosage and another D&C in 3 mo. to see if I am responding to the megace.  I really want to be able to have children but i am so afraid of cancer being there and it not showing up on the D&C.  I do not have any weight problems and i am not diabetic.  I have absolutely no risk factors for having this.  It is really mind blowing.  I just don't know what i should do.  Has anyone else had a recurrence like this and tried megace again with any luck?  

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by Estherlove, Jun 16, 2010
To Hollygolightly,

How did your surgery turn out?  I'm 50 and waiting for biopsy results.  I've had complex hyperplasia withOUT atypia before and am always "scared" while waiting for the news.  I'm hoping for no probs. but am trying to prepare just in case.  I am 50 years old and am feeling like my body has betrayed me.  I, too, look at other women and think, "I'll bet THEY don't have these problems that keep coming up with ME!"  

I hope you are doing well after your surgery.  You truly ARE the woman you've always been.  Maybe more so than ever before.    Kathy

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by Hollygolightly27, Jun 17, 2010
Hi Esterlove

No, I haven't had surgery yet. I have to see her again next Friday and then I suppose she will set up a date. I sent her an article stating there is no diff in 5 years between women who have had their ovaries removed, as apposed to those who did, regarding the return of cancer.

And I'm not even sure it is cancer!  I have hyperplasia, but was never told if it was accute, was there a tumor ( I am assuming not, because I am pretty sure they would have mentioned that. But with these Drs. you never know..) I am afraid of waking up and not being myself again without my ovaries. I know that is silly, and I am 52 years old. But you do lose strength in your muscles and some studies say women get early dementia etc. It just seems like over kill for something that is "PRE" cancer!  I will have no sex drive, it puts me at risk for heart problems etc. I know it's silly, but I may just ask her to leave one in. She can go "innie meanie minie mo!"  LOL!  

As to Yogi's comments. I'm sorry you have to go through this at such a young age. I never had children because my then husband didn't want them, and though I love them, I'm not totally missing that experience. But it must really hurt you to really want them and then you can't. I had a D and C as well in May, and they said I had the hyperplasia. But never elaborated about that. It just seems weird. Why not call it cancer if it is indeed cancer?  

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by Hollygolightly27, Jun 18, 2010
If anyone would like to discuss this subject with me, I look at my emails often during the day, my email address is: ***@****, my name is Holly, and I would love to talk about this to anyone going thru it. This forum is too slow....

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by Hollygolightly27, Jun 18, 2010
***@****

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by Hollygolightly27, Jun 18, 2010
Well, so much for that!  I guess they don't want me to post my email address. My bad!  

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by Iris2649, Jun 27, 2010
I had a Hysterectomy 9 years ago, I don't know if it was the right decision. I also had Endometriosis Hyperplesia, the consequenses after a total hysterectomy is not fun.

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by tdc923, Jun 27, 2010
I am 35, no kids and last week had a polyp removed and an endo biopsy, to which the results say I have complex atypical hyperplasia and suspicion of adenocarcinoma. I have a D&C scheduled for August 2nd and then the doctor wants to do a hysterectomy. I am torn with this decision because of my young age and the thought of being a "barren" woman isn't appealing to me. I was married before for several yrs and I knew I didn't want any kids with him so I always made sure I didn't have any. I suffered a miscarriage once and after that, my periods were messed up, I may have one or may not, never know from month to month. I met my now husband 7 yrs ago and we have been married for 3 yrs and he is a great, great man and he wants a kid or two, one would be a blessing. He is the perfect man to be a father and husband but now with this problem, (A) I don't know if I can even have a kid and (B)if I listen to my doctor and have a hysterectomy, well, there goes the whole idea. We don't have the means to adopt so naturally is the only way we could. I don't want to risk my health but I always am heartbroken at the whole idea. I don't want to have cancer but I don't want my womanly parts taken from me just yet. Plus who wants to deal with the whole hormone thing! YIKES!
I don't know what to do. My gynecologist seems set on the hysterectomy even if the adenocarcinoma is there or not.
I am overweight and I did ask her what if I wanted to have kids, she snapped at me that I needed to lose at least 5% of my weight beforehand. Now I am not naive to KNOW that I need to lose weight but let's be real, I have seen HUGE women have children! I think it should be MY decision to have a kid if I can!

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by Hollygolightly27, Jun 28, 2010
I'm sorry you are going thru this too. I am 53 and its devistating for me as well. You probably have "unapposed estrogen" which comes from having too much body fat. In women (and men really..) that can cause estrogen overload, and will give you hyperplasia. Or you could have it caused by something else. Is it possible to take some eggs out, fertilize them, and freeze?  You could later get a surrogate to carry your child. Sometimes a kind sister, an aunt, a family member will be kind enough to carry the child for you. I've heard stories of a grown childs Mom risking her life to carry her own Grandchild.

I know what you mean about these Doctors. My doctor wants to clean me out simply because the pathology states "Can not rule out carcinoma" I don't know why they even bother doing D and C's when they didn't learn anything new afterwards from the speciman collected. Apparently they cut it all out, and ask questions later. Go to GOOGLE and put in "Keeping ovaries for endometrial cancer. Alot of interesting articles pop up about women who have their uterus taken out and left ovaries. Most of the time it doesn't 'jump ship' to the ovaries. They are studying women now and my doctor said in 5 years they probably won't clear womens whole reproductive organs out. I am fighting to keep my ovaries, because I have read enough about them taking them out without good reason. They are finding out that even after menopause, ovaries produce some estrogen and testosterone etc. Do they take men's testis out for no good reason? NO. Double standards again.

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by tdc923, Jun 28, 2010
I read alot of articles last night and so many times these doctors were just so quick to do complete hysterectomies on women and at 35, I am not ready for that. I have made my mind up and if my doctor isn't willing to help me come up with some other options to TRY first, I will find another doctor and keep looking until I find one who is at the very least compassionate enough to try and help me instead of taking away my whole womanhood. I just feel like without my female parts, I wouldn't even be a woman anymore!
I am so frightened and anxious about this whole ordeal. I don't know who to talk to about it and thankfully just came across this board and felt a little better reading other's stories and ordeals.
I don't know who would surrogate a baby for me. I just don't have a clue. Plus what is the cost in that? A good deal I am sure.
This is all so much for anyone to have to deal with. I told my husband if men only truly knew what women have to go through in being a woman.
I am sorry for you too, and all women dealing with this. I just wish we had answers....



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by G_Rogers, Jun 29, 2010
Hello tdc923,
           First of all I'm in complete agreement if you don't have a good relationship with your doctor - look elsewhere.  If they don't want to take the time to explain things to you or discuss your concerns then you will never be comfortable with your decision.  Also are you being treated by a regular Ob-gyn or an Oncologist?  I did have to have everything removed (well not really but it seemed the best course of action at the time) but they attempted to treat me first because of my age (32).  My oncologist gave me that option for two separate treatments.  At first my complex atypia hyperplasia reduced to just hyperplasia but then when I was put on a stronger dose (megace) the atypia came back.  At that point he couldn't tell me if I had cancer or not.  I share in the frustration with Hollygolightly27 in respect to D&Cs because it is just a superficial scraping but I was told modern science has not developed a method to biopsy a muscle.  I even asked well how many abnormal cells did they find, just one or two?  They don't look at the number either just if there are any, which tells them you are having mutations I guess.  I also don't understand why they don't try to treat us like they do men and not just remove the organs.  I just remembered, my oncologist actually told me that if I could get pregnant that might actually help but I wasn't in the position to do so.  You on the other hand are at a point in your life where you could try.  As for the polyps, I had several of those and I was told they aren't that uncommon.  The lack of information we are provided to make the decision is the biggest frustration because you don't really know until you have the surgery or science becomes more advanced.  I think I need to stop weighing in because I think I make things more confusing.  Because I'm not in the medical profession I can't dispense real advice just my experience and hope that if nothing else these blogs make you feel like you aren't alone.  Good to you and to Hollygolightly27 as well!

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by tdc923, Jun 30, 2010
I am currently going to just a gynecologist but she said after the D&C she would know if she can further treat me or if I will need to see an oncologist gyno, which the closest one is over an hour away! She is just not a comforting person at all, like my regular doctor, she is the most comforting, nurturing, caring person, she makes you feel like even though she has lots of patients, she is there for you and you alone. She told me yesterday that she also had the same thing happen and it came back not cancerous and she can't figure out how I ended up with the mean gynecologist, she set me up the appt but what happened what when they called to set up the appt, this was the first one available so I got her. My doctor is going to send me to HER doctor, she said he is nice and caring like her. He discusses things with you and doesn't automatically go for a hysterectomy. She did eventually have the hysterectomy but she said it was for other reasons. She is in her 50s and it couldve been a world of things. She gave me a big hug and said I love you and this is going to be fine, you will be ok. Even if she is full of air, she made me FEEL tons better. She advised me to go ahead and do the D&C and then come back to HER and we would set up with another doctor. She said "always remember you don't HAVE to use any doctor" So that is what I am going to do for now, do the D&C and then see what else I need to do. I am still so frightened about possibly not having kids and a hysterectomy but we will see where it goes from here. You don't know how nice it is to be able to talk to ppl in the same boat.
<3



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by Hollygolightly27, Jul 01, 2010
Good luck TCD, it's so comforting to have a Dr. be nice and actually listen to you.

My saga continues.... I have the whole "team" all worked up and I had to meet with an ethics committe at the hospital because my Dr. thinks I have a point about not losing my ovaries for a low grade (we hope) pre cancer or cancer. I met with one woman, I gave her all these articles on how it rarely jumps ship from uterus to ovaries etc. I wonder if I am just wasting time, and meanwhile allowing whatever is going on in my uterus to get worse. My Doctor says she is impressed with my researching the subject and my passion behind it.

This woman from the ethics committe said that my Dr. wants to do what is right by me, and what about having TWO surgeries?  One to take out uterus and leave ovaries. Then if it is really bad cancer (apparently, they never really know until they have the freakin thing in their hands) then a second operation to remove the ovaries. I am now waiting for a reply.

In the meanwhile. I hate to sound gross and intrusive.. but do other women feel their orgasms way up in their uterus? Does your uterus contract like mine does?  I'm going to miss that. I feel like I have to have that last piece of chocolate cake before they clean me out like a chicken and I won't be able to enjoy it anymore. My older sister (she had complete hyster 9 years ago for bleeding, not cancer) says she has no sex drive at all. I feel I am losing so much. Not only sex, but my "Drive" and UMPH. Just like a castrated man, there is power in those ovaries. And when they are gone. ALL of your young making hormones are gone as well. It makes me sad...

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by tdc923, Jul 03, 2010
Holly...

Well I am just glad your doctor has taken the time to listen to you and try and go the route that YOU want. I am going to do the D&C and then my regular doctor set me up an appt with her to go over what they find/don't find. She said "you always have the right to a 2nd, 3rd, 4th opinion" so that is precisely what I will do until I find a doctor who will help me.

As for the orgasm, I have no clue as I haven't had this done yet. I hope that isn't what happens. That is just my point, a hysterectomy takes away ALOT. Granted, if there is cancer, it also takes that away but I want to be completely sure that is the only option I have before I do it.

It is so complicated being a woman. We have to go through things we shouldn't have to.

Let me know what happens with you and I will as soon as I go for the D&C and get the results.

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by Hollygolightly27, Jul 13, 2010
Anyone notice when Lance Armstrong had testicular cancer, he had it so bad it was in his groin and spread to his lungs, he was coughing up blood. They operated on him, saved his testicle, froze some eggs/sperm and even with all that - THEY DIDN'T REMOVE HIS OTHER TESTICLE!!  

Unbelievable huh?  The extents they go to to save a mans balls, but a womans ovaries?  Oh take those suckers out toot suite!  

Is it 2010 or the Dark Ages?

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by francie1253, Jul 13, 2010
I was diagnosed in April 2010 with Atipical Complex hyper plasia with atipia.  I went on to 20+ appointments getting more info, tests, bloodwork, ultrasounds both interior and exterior, scans, consults, having an IVC filter placed in my chest to prevent pulmony emboli and finally under went a radical hysterectomy that was thru the da vinci process.  I am a 56 year old, 279lb female diagnosed 38 years ago with Stein Leventhral Disease (PCOS).  I am an insulin dependant diabetic since 1990 because of the PCOS.  My docs all laid it on the line and I followed their guidance.  30 years ago while undergoing fertility treatments I was told that I had an extremely hi 75% chance for endometrial cancer after menopause and probably in my 50's.  Well guess what, it showed up 3 years after I finished menopause.  This sword has been hanging over our (husband and my) heads for decades and now is gone. I had 4 pregnancies of multiples,  lost twins, my daughter was a survivor of triplets, lost triplets and then carried in my 4th pg, twins out of a set of triplets.  We were blessed with 3 daughters all in their 20's now. June 30th I had my davinci hysterectomy and left the hospital Fri. morn.  6 tiny band aid spots and some bruising, but I only took 4 tylenols total, for a headache due to the trendelenberg position on the operating table,  no drugs since I had 0 pain.  My gyno surgeon took 5 hours due to lots of previous adhesions from c-sections and tho the onocologist tried to talk him into a 12 inch top to bottom opening, he did the job as promised.  I have a fantastic doc and I am only 14 days today post surgery needing no follow up treatments.  We got my cancer early and my surgery was a breeze physically and mentally.  Good Luck and God Bless those of you not in my spot.  We were looking for my cancer the last 10 years with twice a year biopsies with the recommendations of my previous OB/GYN once I hit 45 and we knew what to look for.  I thank God for an excellent internist and her own OB/GYN she sent me to!!!!

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by Hollygolightly27, Jul 14, 2010
So you had a total hysterectomy?  Any hot flashes, depression etc? I'm glad you are in good spirits. At least you knew it was coming, I was blindsided.

What is the Da Vinci process?

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by francie1253, Jul 14, 2010
Hi Holly,  I had a radical hysterectomy using the da vinci robot asssist program.  The uterus, both ovaries, both tubes, cervix and a dozen lymph nodes were removed for pathology..  I already finished menopause so I was done with hot flashes but never had depression, only a lot of relief in my case.  The da vinci was a form of laproscopic surgery, using 4 or more 1/2 inch or so punctures in the abdomen / belly button area.  I had 6 including belly button due to my size and adhesions. The surgeon and assistants do the entire surgery threw these tiny holes.  No huge incision.  Look up ""da vinci robotic hysterectomy" on google or other sites.  Lots of actual videos are also on You Tube.  It is extrememly interesting.  I watched over 30 videos before my surgery since I like to be completely informed, I did a lot of research on it.  My surgery was twice the normal time of 1-2 hours due to lots of old adhesions which my surgeon also removed.  The organs can be removed either through a "port" hole or the vagina as mine were.  I needed a pathology study on them and they were removed in whole.  Since the cervix was being removed anyway, the opening was already there.  The only stitches I have are those forming the vaginal cuff, and I have not felt a single pain either there or in the belly area.  I did get some great shades of green and yellow across the belly around my 'port holes' but it sure beats 8-10 in incisions any day.  Truthfully, my only pain was a headache from a head down position for the duration of the surgery, but tylenol kicked it.  I never filled the narcotic scripts my doc gave me because I had no need.  My nurses said this was all common for da vinci patients so I am not an exception to the case.  Research and ask your docs about this form of hysterectomy.  I got out on Friday and Sat. morn my husband and I went to home depot for an hour walk to exercise since they want you to walk after any surgery to help prevent blood clots.  Every day we walk the mall or large store since I have diabetic neuropathy and cannot feel parts of my feet, I hate walking outside on uneven ground.  I prefer to push a shoppong cart, but I can walk no problem without one.  My surgery was 15 days ago and I truly feel wonderful.  I had 2 friends have traditional hysterectomies in the past 18 months and neither was doing as well as I do now and they were 6 weeks in recovery.  This surgery is a blessing!!!!   Ask about it.

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by Hollygolightly27, Jul 14, 2010
I will, thank you!  

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by angelgirl813, Jul 16, 2010
I just found out yesterday that I have Complex Atypical Endomertial Hyperplasia. I went through a D & C, Hysterolopy, and Nova Sure on June 30th. I was told by my Gynologolgist that I needed a total hysterectomy. She has scheduled it for September 22nd. I too am overweight and a diabetic. I also have pulmonary stenosis, high blood pressure, asthma, and I'm on a breathing machine at night. This scares me to death. I'm only 48 years old and have two daughters. I was told that this is hereditary. What scares me most is that my youngest daughter is overweight too. It puts her at a higher risk to get this. Has anyone else on this board have daughters that also has gotten this.

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by Antiquerose, Jul 18, 2010
I am 68 and just diagnosed with Atypical Endometrial Hyperplasia.  I am set to have my D&C on Tuesday July 20th and I am scared of having the D&C.  I really haven't had any bleeding they found it on a biopsy of the Endometrial. The doctors at UCSD in San Diego told me I have to have the D&C right away, then have a hysterectomy after that.  I don't want to take any chances with cancer, as I want to stay alive and watch my grandchildren grow up.  I have read all of the above and , to be honest, it's not the end of the world if you don't have children, your life is more important. Lots of kids out there who need homes.  I learned a lot reading all of this stuff and thank you for it.  I am going to look in to the Robotic surgery and hope it can be done that way.  I am also hoping they don't find anything horrible.  My Pap smear just 4 months ago came back normal, my uterus was normal on exam, the biopsy just came back suspicious.  Atypical is not good, nor is Complex.  I have had Minor Hyperplasia before in which my doctor should have given me Progesterone, but didn't.  You need that to prevent this.  People who are overweight put out hormones which cause this conditon also.  I have to lose 50 lbs.  I also have hot flashes.  Believe me, I know lots of women who have had hysto's and they're happier than ever and have had wonderful sex lives since.  Women your age, I think I am the oldest one writing here.  Don't worry about the afterwards, you will feel so much better, not having to worry about cancer.  Not something I want to worry about, EVER.  They can also give you other things to protect your heart, even without all of your gear.  There are natural homones you can take to feel great.  I , again reiterate, my friends who have had hysterectomies are feeling fantastic.  I know of none of them who are suffering from anything other than a great sex life and the love of life.....Get it over with, don't take any chances....Barb

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by Hollygolightly27, Jul 20, 2010
No offense ANTI, but you are 68 and no longer need hormones. I read that women who are 50 to approx 60 get a low dose of estrogen/testosterone among other unknown hormones that have not even been identified yet, after menopause up until the age of around 63. After that, the ovaries seem to shut down completely (again, we are in the Dark Ages about what the ovaries do after meno, they are just starting to learn more about them) and women completely no longer need them.

You have inspired me that everything was OK with you and your friends, and I do know I brought this on myself by gaining so much weight about 10 years ago. I also think the estrogen overload we do have, makes us retain that weight. So its a catch 22 type thing. Can't win for losing...:)

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by babyboomer60, Jul 21, 2010
Hello from the UK - I too am facing big dilemas about whether to go ahead with a hysterectomy following a diagnosis of atypical hyperplasia - I met the consultant on Monday and quite frankly thought he was insensitive and had no idea about empathising with women.  I have read all of the messages on this page and have found them comforting and informative.  I am 60 next month and about to retire, I do not feel any different today than I did when I was in my 20's and look 20 years younger.  My ovaries and womb are very important and I have a strong emotional attachment to them.   Having read all of the messages, I realise that there is no right or wrong answer and each decision must be an invividual one.  I have decided to ask for another appointment and go with a list of questions before I reach a decision.  I have spoken to my GP who was fantastic and understood the issues I had, he said if I did not feel able to work in partnership with the Consultant then he would ask for a second opinion.  I am also going to ask for a referral to the Homeopathic hospital.

Hysterectomy is elective and rarely an emergency, therefore we have the time to ensure that we make the right choice for us.  Always listen to your instincts, particularly in respect of the pyschological impact of radical hysterectomy.

Thank you to everyone, I have found this very, very helpful and I would like to wish everyone warm wishes and good luck with it all.



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by tdc923, Jul 24, 2010
My D&C is coming up shortly, on August 2nd, after that, I am going to weigh my options, if I have any and decide from there what I need to do. I am scared to death about the D&C even though I know I will be under anesthesia, I am still scared to death about it.

I wish this problem would just decide to go away on it's own!



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by Antiquerose, Jul 26, 2010
Holly, I am still putting out hormones, have hot flashes STILL, and, am looking forward to having the hysterectomy.  Sex lives seem to get better and, just because I'm 68 doesn't mean I don't have or like sex.  They have natural hormones to give you after the hysto.  Being overweight doesn't help this condition, in fact, it can cause it. I am not willing , even if I were 30 years old, to risk my life.  I have wonderful children and grands and don't want to go anywhere or take any chances of getting a deadly cancer down the road.  Keeping your ovaries isn't always the best thing to do.  My friend just passed away after being diagnoses with OVARIAN cancer and she had, had a hysterectomy.  She was gone in 6 months after diagnosis.  

They cannot tell for sure that you have cancer until they do the hysterectomy.  I don't want to take that chance..but, to each their own.  I tried to hang on to all of my woman parts most of my life, however, it is not in the cards this time.  It has to go.  Would you rather have a kid and die from cancer, or,not have the kid, adopt or do what some of the others have suggested and get some eggs out there and freeze them and have a surrogate have your babies for you if you must have children.  

To Tdc.  I was scared to death myself, I hadn't had surgery for 49 years.  I went thru the D&C with a breeze. I went into the OR and they put a mask on me and before I could ask what it was for, I was in the post op area. It was zip and out the door an hour later.  The other procedure takes longer, the hysterectomy.  I woke up and asked how I got there because all I remember was going into the OR...LOL.....my daughter who's an RN laughed and told me where I was.  It's only about a 20 to 30 minute procedure Tdc..so not to worry, your angels will be looking after you :)  Good luck, Barbara

PS, I used to work in surgery, I worked in the trauma unit, I have seen it all...all of the above procedures are a piece of cake compared to what I have seen. I am also going for the De Vinci robotic hysto. I feel bad for those of you who have bad medical care, I am really happy I am in CA for once.  The health care here is fantastic.  I am in San Diego and close to Orange county also, so have the best all around me....

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by Antiquerose, Jul 27, 2010
To Hollygolightly, I am very fortunate,tonight when my doctor called me to give me my results of my D&C, I am cancer free and, there were no more atypical cells. he was amazed at that. So , I still have to have the hysterectomy down the road, in about 60 days, I chose this.  I am going to be on progesterone for those 60 days so nothing grows, then off to the de Vinci robotic surgery to have a hysterectomy.  I am looking forward to all of this being behind me, I am thrilled I don't have cancer and have a fantastic doctor here in San Diego.  He's the chief of surgery at University of California at San Diego.  I am at peace now, going forward with taking care of myself and hope to have much more life to spend with my grandchildren and my kids and husband. It was quite a scare and will be until all of it is gone.  I am very sorry about you younger girls who have had no children, but, life is good and you can adopt, have a surrogate and so on. I had a stillborn and 3 miscarriages before I carried 3 of my own in my 30's who survived.  There's been lots of heartache with children, so, it's not so bad if you are without.  I adore my grandchildren to death, so hope to live another 20 year.  We'll see what God has in store for the rest of my remaining life.  Good luck all, don't be afraid, it's the easiest cancer to cure if u do have it and, I asked my doctor about you guys and he said,, they usually put gals who haven't had children on progesterone so they can have a baby or two then suggest a hysterectomy.  HE teaches this, so he knows what he's talking about...they are suppose to keep you on Magace and keep up with the biopsies until after the kids, then you need to get it taken out Sex doesn't end with hysterectomies I have heard it gets better, no chance of PG and stuff...GOOD LUCK, GOD  MUST HAVE BEEN WITH ME....Barb

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by Annfc66, Jul 29, 2010
Hello all,

I'm 44 years old and just went to the gyn for my yearly pap when I was diagnosed with Complex Endometrial Hyperplasia with Atypia after having a endometrial biopsy and a full pelvic ultrasound.  I just had a D & C on Monday the 26th and am waiting on the pathology reports...I swear the waiting is so hard.  My doctor hasn't mentioned hysterectomy to me yet...but I have a feeling it's coming.  After reading all of the posts, it seems as though most doctors are saying to have hysterectomies regardless of the outcome of the path reports.  I guess I have all of the traits that lead to this...I'm overweight, pre-diabetic, have high blood pressure and have never had children.  My gyn said all of these things heighten the chances of having uteran cancer.  I've been so stressed and nervous over this.  I feel like my life has been put on stand still since all of this has occurred.  I just want to move on with my life.  I'm hoping to get the results of the pathology report tomorrow...I'm trying to think positive thoughts...

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by Antiquerose, Jul 30, 2010
Dear Ann,  I am 68, the one above you in here on the post.  I had the same diagnosis but didn't have the full pelvic ultrasound.  My D&C results took 5 days to come back and it drove me nuts. I called that Monday , this past Monday and they told me I had no cancer and no atypia which he found a little odd.  Anyway, think good thoughts, it may not be cancer, it could 'just be the pre-cancer and you can have the hysterectomy like I am going to have in about a month.  I told him I needed a month off from worrying about surgery, etc.  He did put me on Magace to keep anything from growing because I'm waiting a month, he wants me to have a hysterectomy and I am going to have it.  You are much younger than I, so I think, if you have had children, you can have the hysterectomy and go on with life.  I have a feeling you are going to be fine, still having to have the hysterectomy and, even if you do have cancer, it is 98% curable.  It's one of the better cancer's to have, my doctor said because it's curable...a high high rate of cure.  GOOD LUCK, let me know how your results turn out :) Barb

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by Hollygolightly27, Jul 30, 2010
I'm glad the women who's Doctors told them they have to have hysterectomies are OK with it. I am OK with uterine removal, but not my ovaries. I have read that when they have left the ovaries in women who have stage 1 endo cancer, it rarely jumps ship to the ovaries. Unless it is there already. I have also read that women who have ovaries removed do not make it to their 80's like the women who have kept their ovaries. Heart disease is much more prevelent than the rarer ovarian cancer. I know you can read "TOO MUCH" but the thought of having my ovaries removed really scares me. I have little energy as it is... and once the ovaries are gone, so is your sex drive. Of course you can take testosterone cream and I'm sure that would help. Estrogen is much harder to mimic, they just can't get the recipe right.

I have been thinking of asking for a low dose Progesterone cream. This seems to have helped many women. Any suggestions on what type?  

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by Hollygolightly27, Jul 30, 2010
Take a look at this web site about ovary removal. I wish I were as happy and content as you guys seem to be about ovary removal, but I'm not. I have met many women who have had their uterus removed and ovaries left, and they are just fine. Some of them don't even know if they have gone through menopause yet.

http://www.ovaryresearch.com/

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by tdc923, Aug 03, 2010
I had my D&C yesterday. I was scared to death but once they gave me anesthesia, I don't know what they did to me, lol
I woke up in recovery and the nurse told me everything went fine and I asked "Are you sure I am done?" She got a good laugh because I didn't believe her.
So now the waiting until my follow-up appt, which is in three weeks because my gyn is going on vacation.

I am thinking about all of you and hoping for the very best for all of us <3


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by Antiquerose, Aug 04, 2010
Tdc, see, the D&C wasn't bad. I was also scared and, like you, didn't know it even happened. I asked my nurse daugher who was with me, "How did I get here"? In the post op area LOL..Well, all I know is, I breathed into this mask and I woke up later in the post op place..the PACU...anyway, I left an hour later.  I hope all comes out okay with your results..mine were happiness, no cancer and the atypia wasn't there. He has me on Megace until I decide to go thru the hysterectomy.  I don't want to do it because I didn't like being put out, but, if I have to, I have to....Good luck and let me know the results!!  Barb

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by tdc923, Aug 06, 2010
TY Barb, I will go back the 24th to find out results, I am hoping for the best!!

The last thing I remember is breathing in that mask too!! I guess that is the part that puts you out?? I had no idea! I thought that was just oxygen lol

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by Antiquerose, Aug 08, 2010
Me too, I also thought it was oxygen LOL..well, he has now put me on Megace which makes me dizzy and nausaus.  I hate it and want to go off of it but am afraid to because I might get cancer between now and the 6 weeks I have to wait for my surgery :(  It's making me so sick to my stomach. Anyone else have that problem?? Barb  Tdc, let me know how the tests come out....:)

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by Annfc66, Aug 08, 2010
Barb,
Thank you so much for your positive words of encouragement.  I did get my results back...5 days later as well.  That was one of the longest weeks of my life!  It turns out that I have no cancer and that the hyperplasia was isolated to a polyp...so there is no more hyperplasia in my uterus.  What a total relief!  She (my gyn.) didn't even mention having a hysterectomy.  She does want me to start taking birth control pills or have an IUD inserted to regulate my periods.  She also said that she wants to do another uterine biopsy in 6 months just to make sure the hyperplasia hasn't come back.  She wants to see me again in 3 weeks to further discuss my options...my next appt. is Aug. 25th.  So basically great news.  I was actually rather shocked that she didn't mention anything about a hysterectomy...which I was mentally preparing myself for.  I'm just relieved she don't think I need one.  Good luck and Best wishes to you!  ~Ann

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by Annfc66, Aug 08, 2010
Sorry...meant to say "I'm just relieved she doesn't think I need one." on that last post!

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by Hollygolightly27, Aug 16, 2010
Not for nothing, but I notice all, or at least most of the women on here listen to everything their doctors tell them about having to remove everything with hyperplasia, including their ovaries. Doesn't it concern you at all that this operation is done far too often in this country?  And that in Sweden and other countries, it is a rare operation? Don't you think you need your ovaries for hormones, wt control etc?

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by mmmichelsen, Aug 23, 2010
Hello All:

I want to thank all who have posted on here.  It is very comforting to know I am not alone and there are other options.  You have given me a lot to look into, and many questions to ask before making my decision.

I am 50, never been pregnant, very overweight, and high blood pressure.  Then in April I was diagnosed with an anuerysm on my ascending thoracic aorta.  No surgery need at this time because of the size, I will just be monitored.  Now, I have been diagnosed with CAH and the Big "C" word is a scarey thought.  Of course my male GYN said D&C first then suggested the complete hysterectomy.  I have talked to a few friends that have had a complete hysterectomy and they are totally glad they did it.  My sis-in-law had it done 5 years ago and said she has not taken one pill for hormone replaced.  She also suggested to ask if I could keep one ovary.  I have had 2 D&C's in my lifetime, but never major surgery.  I am looking to get a second opinion.  A friend suggesting contact this (supposedly best in the country) cancer hosptial in TX to see if they can look over my tests/results.  They will suggest options.

God bless you all.  M

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by tdc923, Aug 26, 2010
Ok, sorry it took me so long but I had my D&C and went for results this past Tues.

I am happy to report that so far, it is not cancerous, or even pre-cancerous and my complex atypical hyperplasia was reduced to just complex hyperplasia.

My gynecologist immediately said she still wanted to do a hysterectomy and I told her no, not now if I don't have to. She was mad and almost insisted I do one, but I wouldn't budge on it. She prescribed me Provera and told me it will cause me bad acne, bad nightmares, possible blood clots and something else I can't remember. I am not going to take the medicine just yet, I am going back to my regular doctor and have her find me another gynecologist who isn't so pushy for a hysterectomy. I have had enough of this doctor and if she wants a hysterectomy, she can do one on herself!

I will keep you updated on what I do, when I change doctors and I am continuing to pray for myself and all of you, as well as anyone else with these problems.  Good luck to each of you!

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by Hollygolightly27, Sep 15, 2010
Would someone please tell me, do you feel different without ovaries? I have been postponing hysterctomy, I don't want them to take out my ovaries. I've heard some women experience less joy, of course diminished sex drive, but dimished drive for everything else as well.

I am afraid. If I say OK, take out my uterus and leave my ovaries, they will take them out anyway. And maybe they should come out?

Im so confused.

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by paulette101, Sep 16, 2010
I just found this site.  Next Fri I have to have the D& C.  I had premature ovarian failure at 33. No bleeding until spotting a few years ago.  I would always mention this to Dr but said not to worry ect.  Finally after the bleeding getting worse went to a gyn and said you need to listen to me.  So I had the ultra sound and was found to have the thickened edometrial lining.  Now I will have the D & C next week.  I am so mad that I couldn't get someone to listen.  



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by paulette101, Sep 16, 2010
PS, I am now 57.  

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by Hollygolightly27, Sep 25, 2010
Glad to hear you are alright now Paulette. So did you take replacement hormones for the years since ovarian failure? I'm curious as to what type?

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by saralyn175, Sep 26, 2010
I am a 58 year old woman who is 2 years out from any type of period.  In mid august i noticed a slight spotting on the toilet paper after using the bathroom and immediately called my family doctor. Within 5 days i was seeing her, who sent me for an ultra sound along with a transvaginal ultra sound.  My family doctor referred me to a gyn who one week from that visit did a d & c with a hysterscope for a polyp that showed up on the ultra sound.  D & C revealed i have complex atypical hyperplasia.  It is now sept. 26, 2010 and i have an appt. tomorrow with Dr. Patrick Lowe at Northwesterns Prenstiss Womens Hospital in Chicago for my first appt for a hysterectomy using the daVinci robotic system.  This is moving very fast...from sept 15 to sept 27 and a consultation for a hysterectomy.  All i have read states that you need to be approved as a "candidate" for this robotic system..is this true?  Can a doctor turn you down for this procedure?  I am also being treated for high blood pressure, which soars each time i have a doctors appt, but seems to be getting under control.  Can i truly be told NO you cant have the hysterectomy?  My fear is crippling,,,i dont sleep, i dont eat.  Since first seeing my family doctor on August 20th i have lost 10 lbs from worry.  I just want this OVER with...they can take it all,,,everything!! i just want it all out of me!!! I have one son who i adore,,,and whatever the onc wants to take out,,he has my blessing!  Please, does anyone know the survival rate of this type of hyperplasia?...i seem to have gone numb in the last few days...and spend hours and hours reading all i can.  Help!!! Anyone!!

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by bjn333, Oct 05, 2010
I am 52 and went through menopause about ten years ago.  I have just been diagnosed with complex atypical endometrial hyperplasia.  Because of my age, my doctor is recommending removal of the uterus and ovaries.  Since it is possible that the D&C did not remove everything, I could have cancer and not know it.  I've agreed to the surgery which is scheduled for 10/27.  I can always change my mind and cancel it.  My first reaction has been "take it all out - anything that could be or could become cancerous".  My second reaction is to be surprised at how willing I am to do this.  I've always been appalled at the things that are done to women by their doctors that perhaps don't have to be done.  Of course, I've never faced the possibility of having cancer before this.  It changes everything for me.  We each need to make our own decision.  I've only begun research, but I'm having trouble finding anything about successful alternatives to surgery or hormone treatment.  Does anyone have any information about this?  I feel for you all, my sisters, and wish you the best outcome.

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by Hollygolightly27, Oct 06, 2010
I am still battling back and forth with doctors after being dx with complex hyperplasia. After DandC they said "cannot rule out cancer" which to me is a wishy washy dx. I read everything online about ovaries, and it seems women still get testosterone, estrogen etc. in higher doses that they thought, well into their 60's and beyond. But my doctor (suprisingly a woman) refuses to just take my uterus out, seeing if it's cancer, then coming back later to get the ovaries if it is. She has given me no reason for this hesitation other than "You couldn't take another operation" - I've had several surgeries over my life, and never had a problem. She is just pig headed and thinks she knows it all.

In the process of finding another surgeon. One who will respect my opinion and will try at least to keep my ovaries. Many studies on younger women have found endo cancer rarely jumps ship to ovaries. And in fact, once the U is out, you have less of a chance to get ovarian cancer than women who still have their uterus.

I hope this doesn't go on for much longer... the longer I wait, the more chance of spreading if it is cancer. BTW, I'm 53 and haven't gone through menopause yet. I was told the heavy bleeding was "just a part of the change..." Doctors truly do not have a clue!

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by justone333, Nov 05, 2010
I'm 39 and just made a year from having a mitral valve replacement, i'm on blood thinners for life and also battling high blood preasure with weight loss. On oct 29, 2010 was diagnosed with complex atypical hyperplasia and the only option for me is hysterectomy. But along with resolving this illness comes alot of complications in getting there ! The worse part of it all !!! Is i alwayz Prayed to have at least one Gift from our Lord which was a child ! Now i await the worse day of my life ! my appointment  !

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by miravas, Nov 07, 2010
I'm a 34 year old female with no children.  I have just found out that my simple/complex endometrial hyperplasia has just changed to atypical/complex hyperplasia.  I have always had heavy and irregular periods.  Six years ago my mom was diagnosed with endometrial cancer stage 4 in July and passed away that September.  She was 67 years old and unfortunately didnt have good insurance and did not focus on her gynecological care.  She had been treating her high blood pressure with meds but otherwise had no symptoms besides some back aches.  No bleeding or spotting.  Our lives changed in a matter of 2 months and I blame myself for not having the insight at the time to help her with her overall medical care.  Now it's my turn, unfortunately.  This disease has a strong genetic influence I guess and I am having to deal with it in my 30s and did I mention....I have no children.  I am devastated.  I know it's supposedly not yet cancer but I cant help but think that maybe it is and it's just not yet detectable.  Even if it isn't yet, it can be and may well be for me as it was for my mother.  I can only give thanks to God for allowing me to detect it early and maybe the death of my mom served as some kind of purpose for me.  I cant help but think to myself "WHY ME"? "WHY NOW"?  Reading all the comments of all you brave women has made me realize I am not alone.  I still have options I hope before the dreaded talk of hysterectomy.  But I'm scared.  Thank you ladies for your stories and your so very important information.  God Bless you all!!!!

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by mazgaz_downunder, Dec 05, 2010
Hello All, this has been a very interesting thread as I also am having a total abdomin hysterectomy due to Complex Endometrial Huperplasia with Atypia. I'd like to hear from ladies who have had this procedure already to know if there are any ongoing issues . e.g. was there a need to have chemo/radiation after? were there any complications? would love to know the 'what happens next?' scenario. Cheers from 45 yo in Australia

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by mmmichelsen, Dec 09, 2010
Hello All:  I have been checking this site but not posted since 08/23/10.  I saw two other doctors after diagnosed with CAH and still took time to decide what to do.  On 11/04/10 I had a radical (complete) hysterectomy and lymph node sampling.  Final diagnosis: Endometrial Cancer.  The tumor was 3.5 cm. x 2.5 cm. in the uterus only with minimal infiltration through the uteran wall.  The cervix, tubes, ovaries and all lymph nodes were clear, no cancer.  It was 'caught' early, and now I am all clear and no radiation treatment was required.  I just have to follow up with a CT scan every year to make sure I am still good or to catch anything else.
I know CAH was cancer cells found in the biopsy, and no one would commit to say that actual cancer was or was not there.  I worry about what would have happened if I waited too long.  Knowing it was not growing by leaps and bounds, but feel reassured I made the right decision.
I hope this will help in your decision making and I wish all of you well.  Keep doing your homework until you decide what to do.  Give it up to the Lord because once I did I felt the heavy burden lift.  It opened my mind and got to the right doctors to help clarify what I was reading from the biopsy results.  Merry Christmas and getting ready to start off a great New Year.  M

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by wendyonethounsandone, Dec 28, 2010
Hi Everyone,

I'm another complex hyperplasia w/atypia and would love to hear from those of who have used Magace ethier successfully or not.  

If  you had success with reversal did the hyperplasia return, and if so did it return with a vengence?  My limited understanding of cancer leads me to believe that cancer has momentum. Meaning it is hard to stop when started. So if you stop it, because it's already been there, does it leave a residual framework that would make it return more quickly?

If you used it without success, when did you decide to give up the effort and why?  Did you get a hysterectomy at that point? And were you able to keep your overies dispite your risking them to keep your uterus?  What I mean by that is: My understanding is that any amount of time spent  with your uterus still intact is time that the cells can progress into other areas. Did your effort to save your system jepordize your overies?

Finally about overies. This is the big one, it's all about the overies for health concerns. My understand based on hours and days and hours spent online ( I will get myself to the library before a desision is made) is that even if you keep your overies thier function is compromised.  The ONE valid long term study I found stated in the summery that essentailly the overies in post hysterectomy women stop functioning approx. on average 4 years sooner than those of women who have their uterus.
Google "The association of hysterectomy and menopause: a prospective cohort study.Farquhar CM, Sadler L, Harvey SA, Stewart AW.Department of Obstetrics and Gynecology, National Women's Hospital, University of Auckland, New Zealand"

Also, a sincere Thank you! to all for taking the time to share you experiences.

Best wishes,
Wendy

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by renots, Jan 19, 2011
I am 51 and will be having a biopsy in two weeks to determine if I have hyperplasia.  I have already been told that I have 2 fibroids, adenamiosis and endometrial cells were found on my last pap smear.  4 years ago I began having very heavy and painful periods.  A year ago I finally was able to get a Dr. to investigate and they noticed the endometrial lining thickness.  A D & C was done at that time with hysteroscopy and a polyp was removed.  For the last year my symptoms have improved somewhat (at least the pain, but periods are unbelievably heavy).  Now, out of the blue these endometrial cells have my Dr. concerned.  I imagine, from what I have read that the Dr. is probably going to recomend a hysterectomy based on the adenamiosis even if there is no hyperplasia.  I am confused about all of this.  It seems like one thing after another.

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by amg65, Jan 26, 2011
52 year old with complex with atypia scheduled for surgery in 2 weeks. Have to decide weather to have ovaries taken out at same time. What have others done and results?  Surgeon will take out if he finds cancer during surgery. Otherwise leaning toward keeping them.

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by SuziQPon, Feb 06, 2011

My surgery is scheduled for March 1st.
I will have my uterus, ovaries, and possibly my lymph nodes removed, depending on the cancer in my uterus.

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by SuziQPon, Feb 06, 2011
Because of some of the comments here, I asked for the Da Vinci Robot.
The doctor I chose is a gynecologist with an oncology specialty.
I will have the surgery at the City of Hope, in Duarte, Ca. I feel that I am in good hands.

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by see1976, Feb 09, 2011
Hi Everybody and  Wendyonethounsandone

I have diagnosed with Complex Endomerial Hyperplasia with Atypia in July 2009 when I was all ready for the in vitro procedure to have a baby. I was so devastated. I was on megace 2 times. Tablets and liquid in both forms. MRI report showed good result but the biopsy didnt turn out well. So after 9 months of treatment the doctor told me that I'll have to go for a Hysteroctomy. I am 35 yrs old and dont have any kids yet. I was so devastated. So i wanted to go for a second opinion. This doctor put me on the Progesterone IUD treatment. They did a biopsy on me 10 days ago after 3 months of the IUD treatment. The doctor is really happy with the improvement. They told me that I still have the complex hyperplasia but they didnt find any atypical cells. They want me to be on this 3 more months and if everything goes well then after three months I can try to have a baby. So I at this point I am really keeping my fingers crossed. I am so glad to find this site today. I am not feeling alone anymore. I can have supports from so many ladies now. Thanks again for listening.

See

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by SuziQPon, Feb 09, 2011
see 1976,
I am so sorry for your diagnosis, but I am very happy for you that there is a chance that you can still get pregnant and have baby.
I have a close friend that took a huge chance. She was in her late twenties and was stage 3.
The doctors wanted her to have a hysterectomy, but she finally found a doctor that was willing to do other things.
Does the "cone" D and C sound familiar? Well, anyway, it worked in her favor. I know she took a grave chance, but she made her own decision. She has been cancer free for over 20 years. She still has her uterus, ovaries, and two adult children.

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by SuziQPon, Feb 26, 2011
Hi Everyone!
I had my surgery sooner than the March 1 date and it was actually on February 18.
The surgery was 8 days ago. It lasted 2 1/2 hours, utilizing the da Vinci Robot method.
They found the original polyp and pre-cancerous site, but they also found another polyp with another precancerous site that no one was previously aware of.  
At 54, and having had two adult children, I was O.K. with getting the hysterectomy. They also took out my ovaries, but didn't have to touch my lymph nodes. I am not walking around much outside, but would love to next week. I am taking it easy. I feel great, but am I being too cautious?? I walked around a little this morning for about 15 minutes, but my DH had a fit when I got home. He said our neighborhood was too "hilly," LOL.
I have been sitting at home watching TV and movies, visiting with friends and family, and resting.
My friends and family have been making me meals everyday for the last week and will continue to do so fo rthe next week.
I may go to a drug store that has a motorized wheelchair tomorrow if I feel brave.

I was in pain the first couple of days, and that is about it. I ate a few Vicodins in the hospital and did not need any when I got home. We live in a two story house, so I went up and down the stairs once a day with no problems. I just had to walk slowly and be very careful.

The doctor will see me again March 2.

My stomach has only 5 little openings. I am glad that someone else posted about the green and blue shades near the little openings, because the green ones alarmed me a bit. Now I know not to worry too much.

If I walk around too much I have a little back ache.

I too am about 30 pounds overweight. Was this brought on my my weight, rather than my age?
I am so thankful that I found this site, because you told me aobut the da Vinci Robot, and I think that this method is the way to go for a total hysterectomy.

Bye for now.

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by SuziQPon, Feb 26, 2011
I also want to point out that two pap smears taken during October of 2010 and January of 2011 turned up negative.
The doctor saw the polyp, it was rather large, so it was removed at the hospital (outpatient) in November, the pathology report discovered the Complex Hyperplasia with Atypia, and it was my decision to have the Hysterectomy.
I did so after I had another biopsy done.
Since the surgeon found another site that none of us were aware of, I am still happy with my decision for now.
It is early for my recovery, so I will let you all know what the future brings.

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by lori773, Mar 04, 2011
I am 52 years old and recently was diagnosed with borderline Endometrial Intraepithelial Neoplasia/Atypical Complex Hyperplasia after an endometrial biopsy.  The first thing I did was cry for two days after being told I needed a total hysterectomy.  I didn't really have any problems other than a few skipped periods and an occasional heavy one.  I just assumed it was from stress (after my mother's passing) or possbily from starting into menopause.  I also have about six uterine fibroids.  Since my diagnosis, I have read everything I could about my condition, as well as going to another OBGYN for a second opinion.  He recommended a D&C before doing a hysterectomy because he would want to know if I did in fact have cancer.  My blood pressure has been borderline high over the past few years, so this news has caused it to go even higher.  I will have to go on medication to get it lowered before I do the surgery scheduled for March 24th.  I have a preop appointment on March 10th.  I was told I am a possible candidate for the Da Vinci Hysterectomy which is much less invasive than the abdominal hysterectomy.  I am very scared the closer the day of surgery gets.   I don't know how I will get my nerves under control but I have to.  I want to put his behind me and move forward with my life.  

I appreciate all the postings on this site.  They have been very helpful and I think we can all use a good support group during these stressful times.  Please keep me posted on your condition/recovery.  I will again post after my preop appointment.

God Bless.

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by Jackieng, Mar 04, 2011
Hi everybody, I am 45 year old Asian. I have a lapse in period for 6 years before it returned in June 2010. Before this I thought the lack of period was due to the fact that I am a meningioma survivor and on permanent anti-epi;lepsy drugs. The idea of early menopause doesn't seem a bad idea at all because of the fact that I am living with paralysis. When my period resumed in June 2010 and after the brain tumour scare, I thought if there is something wrong i will catch it early so I still went to a gyn.

I was diagnosed with complex atypical hyperplasia on 20 December 2010 after a hysteroscope earlier the same month. At the time the pathology report read something along this line, not invasive, few meta sises. I eagerly asked the gyn what can we do about this condition. The GYN decided to put me on hormone therapy for 3 months she explained that this would reduce the activities in the uterus. Then we will take another sample from the uterus to see how it goes.

Earlier the specialist who did the scope on me had explained to me that if its indeed Complex Atypical Hyperplasia there are three options.

1 is hormone therapy which is not a curative method, patients on hormone therapy have to undergo regular biopsies after each scheduled hormone therapy.
2 is hysterectomy which provides permanent cure and guarantees the condition wouldn't develope into cancer.
3. Don't do anything at all.

Before I attend the appointment which is on 21 March 2011, I hope to get some pointers into how do I know if my body has responded well to the hormone therapy. Thankfully up till now I don't have any side effects from the hormone therapy.

Thank you.








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by Jackieng, Mar 07, 2011
Does a decrease in period flow means less 'activities' in the uterus therefore it is a good sign ? I ask because mine flow was very heavy in November and December but it has reduced to spotting in February. Does anyone have any experience regarding this ?

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by SuziQPon, Mar 07, 2011
Yes.
I thought that the on and off, short and long days of heavy and minimal bleeding was menopause trying to take over, starting at age 52 or 53. Little did I know that it was two polyps (one the gyn saw, and one no one saw until my hysterectomy) growing, bleeding for some reason. The gyn told me that unexplained bleeding (not during the usual menstral cycle) was one of the indications of polyps or cancer (for me it was pre-cancer).
The confusing part was my onset of menopause, so stupidly I blamed the bleeding on that.
PLEASE. Now I know, any unexplained bleeding is an indication of this pre-cancerous condition so get yourself checked out!
The bleeding came, sometimes for as long as 2 weeks, then went away, then would come back again.
I just was confused.
Good thing I went on vacation with my best friend and she lived with me for two weeks and I was on my "period" the whole time.  She wisely told me to go see the gyn doctor, as I was bleeding too long for it to be menopause.
When I went in, the gyn found the first polyp that was so big that he called it a "tumor."



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by SuziQPon, Mar 07, 2011
I had my surgery a little over 2 weeks ago, and I have been a complete "baby," LOL.
I finally got permission to drive and go to very short store trips or visits to friends or relatives.
I have yet to cook a full meal, standing up.
No housework. No lifting anything that is more than 5 pounds.

Work called to see if I will consider coming back a week early (at 3 weeks post surgery).
I would but I still feel a little weak. I feel good, but not even 75% strength yet. I feel about 50% right now.
I think I will be ready to go back at about 4 weeks post surgery. I am a teacher, and I can sit on a bar chair next to my podium in front of my class. My students are adults, so they are really good "helpers."

The doctor wrote me the medical release for 4 weeks, based on how I looked and how I felt.

The da Vinci method is not bad. Because of the smaller incisions, I am healing fairly quickly.
The doctor said that the recovery time is 4-6 weeks, with some patients going back to work as early as 2-3 weeks.
The other methods take a bit longer to recover, but I am sure that some people do great with the other methods too.
I just needed that extra rest, so I decided that I was not going to rush it. Four weeks is soon enough for me.

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by SuziQPon, Mar 07, 2011
I do want to mention that the da Vinci method is excellent for this type of surgery.
It is not the best option for other or all surgeries.

The pathologist at the City of Hope was really good and found another microscopic borderline pre-cancerous site on on one of my ovaries. Since it was so small, the gyn oncologist did not see it when he was removing my uterus and ovaries.
He said that if he had thought that it was cancer, he might have also removed my lymph nodes.

He will monitor me every 6 months for two years. If I get the "all clear," then he will see me yearly after that.

I will pray for the "all clear."
I like the fact that I had a GYN oncologist do the surgery. The preliminary pathologist results came while I was still on the operating table, and the final pathology evaluation of my uterus and ovaries came later.

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by SuziQPon, Mar 07, 2011
Buy some pants that have elastic. Your stomach swells like a balloon at first, but it eventually goes down.
Also, ask the nurse for a stomach "binder." This held my stomach together and made me feel more secure when I tried to move around. I walked the next day, but don't overdo it.
They wanted me to leave after the first day, but I stayed until day 2.
If your family is supportive, go home! It is boring, LOL.

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by SuziQPon, Mar 07, 2011
Lori773,
I understand that you are a bit scared, but so was I.
Just take things one day at a time.
My blood pressure actually went down after my surgery, probably because I had made my decision and quit worrying about it.

Good Luck.

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by SuziQPon, Mar 07, 2011
Wendy,
I am happy things are better for you and you can try for a baby.
Good for you!

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by lori773, Apr 17, 2011
SuziQPon,
Thank you for your comments.  I did survive the surgery on March 24th and am now in my fourth week of postop.  I had the Da Vinci surgery and went home the same day.  I have been very fortunate in that I had no pain and never had to take any major pain medication (just one Advil).  I have had no complications.  Luckily, they did not find any cancer, only four fibroids (two were very large) in my uterus.  I suspect that is what was causing my irregular periods.  Since I was already post menopausal and have had my children, a total hysterectomy was a good choice for me.  I no longer have to worry about whether or not the complex hyperplasia will turn to cancer.  Removing my uterus eliminated the hyperplasia.  I also had my ovaries, cervix, and tubes removed with no symptoms of menopause.

TO ALL CONSIDERING A HYSTERECTOMY:  I highly recommend the Da Vinci Hysterectomy if you are a candidate.  It is less invasive, has fewer complications, and less recovery time.  My results may not be typical but I am glad I went this route.  Read as much as you can before making your decision and get a second (and possibly third) opionion.

God Bless.

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by SuziQPon, Apr 26, 2011
Hi Lori773,
I am glad that you are doing so well.
Isn't that surgery the best?
My stomach swelling went down and i feel much better.
I am walking and doing more.
I still try not to lift too much, although I am lifting items as much as 10 pounds or less.

I don't have any bleeding since before my surgery, and not too many problems. My libido is really down, and the doctor said that I am not a candidate for HRT therapy. I think I also feel this way because of my stitches, bloating, and internal stitches that need to heal.

I am happy all turned out well so far for both of us.
I went back to work at week 4. I felt O.K. to go back at week 3 part-time, but I didn't want to "push it."

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by wildkatzt, May 12, 2011
Hi Im new on here.  Im 31. in march i had a hysteroscopy d&c and polyp removal. after the op i went home with a not saying polypoid endrometrium cervical prolapse pcos and non pcos ovarian cysts ( the pcos and non pcos I new about) Tuesday this week had post op appointment that was brought forward and was told I had atypical endrometrial hyplasia and needed a hysterectomy within 3 months.  Thank god is all i could think this is what i have wanted since i was 20 as periods have always been horrendous and ferility drugs never worked.  I have a few questions after saying my ovaries r producing exessive amounts of oestrogen and minimal progesterone which is causing my weight issue and dont laugh causing my already large enough boobs to grow even more.   The consultant is speaking to my old fertility gyn to c if says keep or loose ovaries.  But wants me to think about it 2.  what have other people here done.  Also can anyone suggest anything to help the recovery time and anything to make the go op easier,  also im not sure what to expect when i come round from the op.  I have 2 fantastic adopted children 1 of 20 months 1 of 2 1/2 so want to try and be fit asap.  Got call today op in 3 weeks and waiting for date for my full body mri scan.  any advice will be greatly received ty

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by SuziQPon, May 21, 2011
Try to see if you can get a second opinion from an gyn/oncologist.
I would have an oncologist do the surgery if you have any hint of cancer or pre cancer.
I went to one of the best oncology hospitals in our area of Los Angeles.
Also, I had my surgery using the daVinci robot. The incisions were very small, and the recovery time was cut in half.
I went home two days after surgery, but I wish I went home after one day, like the doctor wanted me to. Two days was a bit boring. On the other hand, if I had TWO little ones I would stay in the hospital as long as I could to ensure a good rest.

You definitely will need help at least the first two weeks as you cannot lift over 5 pounds for 6 weeks.
Try to get your mother or MIL or any other retired relative to help out with you and the kids for a couple of weeks.
Does your DH have any vacation time coming? He may need to take some time off to help you and the kids.
Make sure to ask the nurse at the hospital for a binder to help keep your stomach stitches together and makes you feel less pain and more secure.

No cooking, cleaning, walking too much, no sex for 6 weeks.
Just rest and try to pamper yourself. This is your healing time.

If you do not have family, maybe your friends can help out.

Mine brought food every day for two weeks (dinners).

If you have a little money and your DH has to go back to work, hire a babysitter to help out while you nap.
My favorite was two days of housekeeping for $75.00 a day. The housekeeper made me my lunch both days, and I got a clean house at the end of the day.

I like this website that I want you to check out: It is called "Hyster Sisters." It is a much larger site and there are many women posting every day.

As for me, I had my surgery 3 months ago, and I am feeling better and better every day.

Good Luck!

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by SuziQPon, May 21, 2011
If you are brave, you can watch a hysterectomy on You Tube utilizing the daVinci Robot.

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by SuziQPon, May 21, 2011
Buy some pants that have elastic.

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by grisselle, Jun 03, 2011
Hi, a couple of months I went to ob-gyn and he discovered I had atypical complex hyperplasia. I had been bleeding for more than a month so I knew something was not right. He prescribed Provera 10mg, which did not stop the bleeding and now went to another doctor which prescribed Megace 160 mg...at last, my non stop bleeding has ended. I am only 29...hysterocomy has been mentioned if the pill treatment does not work, which is the last thing I have in mind... My first doctor has told me- non-stop- that I need to loose weight in order to not get cancer. I am now worried because side effects of megace is weight gain. Reccomendations please?

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by LaurelJ, Aug 08, 2011
Gynecologic Oncology Group (GOG) study:

GOG-224 is an exceptionally important study to see if a short term oral Megestrol Acetate (i.e. up to three months) can eradiate a precancerous condition in the uterus called atypical endometrial hyperplasia.  I can email an official GOG brochure that discusses the trial. This trial looks at the short-term use of Megestrol Acetate to reduce uterine cancer risk in women who want to have children.

I am a volunteer patient advocate with the GOG, and am an ovarian cancer survivor.  If you are intested in this study, please feel free to contact me for further information.

Laurel

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by H0llyG0Lightly, Aug 16, 2011
I don't want to have children, I am 54. But I have been told they will not remove just my uterus, but insist on removing my ovaries and cervix as well, for a supposid case of complex hyperplasia. In Sweden it is considered over kill to remove ovaries. I would be interested in any study that involves NOT removing my ovaries, since they still send out hormones even after the age of menopause. I would love for you to contact me, but every time you post an email address, they block it out. Oh well, I will try again - ***@****

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by Tam5003, Aug 24, 2011
I am so scared of the DNC procedure, my doctor will go in blind and will not be guided with the scraping of the endo tissue.  During a gusher a piece of endo tissue escaped and I forwarded it to the OBYGN.  She stated that labs results indicates "suspected" complex atypical hyperplasia.  My concern is why the lab could not give a definite diagnosis.  I feel like something is missing and am at wits-end with the medical treatment for this condition.  I am 38 years old and have PCOS.  So many women on the forum has the same diagnosis.  My goal is to get to the bottom of what originally causes PCOS.  My theory is that it starts with the endocrine gland.  I believe this condition as well as hbp, weight gain and various hormonal change (also in this case complex atypical hyperplasi) are not the root issue, but like I stated earlier it is the endocrine gland.  It will not be until medical science successfully research, minimize or even eleviate the root culprit of  our problems that will and only will end the endless cycles of medical problems.  Otherwise, we continue to suffer the affects that are simply raveging our bodies.  Far too often the symptons (if u call it that) are being treated but not the issue.  Wish you all well.  This a big deal to me as well as confusing and lacks many options.

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by SuziQPon, Aug 27, 2011
Usually the samples given to pathology from a biopsy are small. The pathologists can only tell so much.
I would allow the doctor to take another biopsy and send it to a different lab. This way, you have either a confirming report, or a different diagnosis.

Different pathologists can have different opinions about the same sample. It is not probable with complex atypical hyperplasia, but possible.

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by wildkatzt, Oct 29, 2011
Hi all I posted back in may that i had just been total I had complex atypical endometrial hyperplasia After a hysteroscopy at end of march.  results given to me 12th may.  I had my vh bso 1st june histology results showed it had changed to severve atypia early stage cancer.  now im on the mend and feeling great didnt realise how little i was able to do pre op.  Yes Im only 31 but hysterectomy has been the best thing to happen for me.  I was told if I had done as my gp wanted and tried the merina coil b4 being reffered and standing my ground with my consultant as he wanted to do the coil to  then i would not have seen xmas 2012.  Ok my stubborness did not go down well with my gp of consultant but it did save my  life as my case was a fast changing case.

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by redheadnutter, Dec 15, 2011
HELP needed please....
I was told that I had complex atypical hyperplasia back in early 2009 I was 36 at this time and I had been trying for a baby for 4 years or more, I’m now 39, I have had 4 unsuccessful IVFs within this time and 3 courses or provira and 4 hysteroscopy’s, the last test last month has shown its come back again, I am going for another MRi scan in a few weeks to make sure nothing else is there. I don’t have children and I want one more than I can express, I know some of you may think I should not take the risk and I have agreed with my doctor that I will have one more ivf if the cells clear this time but if it doesn’t work I will have to have the hysterectomy, my doctor has been fantastic and even said that he should not have let it gone on this long really but he knows how much I want children,he also has no idea why I have got this as im not overweight and I have heavy but normal periods, he said this worries him a bit more as this is not the norm. I guess I’m kinda hoping for someone to tell me that they have been in a similar situation and gone on to have children, or recommend something else I can do. Thank


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by SuziQPon, Jan 01, 2012
Reheadnutter, sorry that your cells are still there.

I hope that you will conceive soon.

Go to a cancer teaching hospital. DONOT make an appointment with a gyn oncologist just yet.

They have gyn doctors at the teaching hospitals that are not surgeons, but know how to manage cancers.

Be open and tell them what you want. Some people avoid hysterectomies at all costs.
We have the right to "roll the dice" a bit if we want children.

I transferred to a teaching hospital and the experts there are excellent.
I have not regretted my bold move.

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by tlgordbk, Feb 09, 2012
Hello everyone,

My husband and I had been ttc for a year when we were referred to a reproductive specialist...all at once I was diagnosed with pcos, then i was put on a diet and we tried femera.  No luck, then I had a procedure that shot dye into my uterus and they found polyps and that both my fallopian tubes were blocked.  I then had a hysteroscopy and laproscopy to unblock them and remove the polyps, I also had a D & C.  I was found to have severe endometriosis and my biopsy of the tissues they gathered during the procedure showed that I had complex hyperplasia with atypia.  I have been on provera for the last 3 months and had a biopsy.  My doctor said that I should have a hysterectomy if I didn't want to have children, but being only 32 and just recently married, we wanted to have a family.  So we did the provera and the biopsy just came back negative...but she said I had a limited window to ttc because the endometriosis would come back...but she isn't ever entirely clear with her explanations of things, so should I still be concerned about trying to have a baby and possibly having cancer later?  I still have horrible periods and lower back pain and abdominal discomfort...should I just do the hysterectomy, I read so many times that they don't find the cancer until after they do the hysterectomy...I always find it hard to get all these questions answered, but my doctor is really good...she is just very busy...or is it possible for the hyperplasia to go away and not come back?  Any information would be greatly appreciated, thanks for listening :)

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by SuziQPon, Feb 19, 2012
"...or is it possible for the hyperplasia to go away and not come back?  Any information would be greatly appreciated, thanks for listening :) "

I am not sure. I think it depends on the severity of the hyperplasia.
Mine was characterized as Complex atypical hyperplasia, which means that it had 30% chance of turning into cancer.
That being said, there was maybe a 70% that it would not turn to cancer.

Complex is a "tough" word, and suggests something more sinister than "Simple atypical hyperplasia."

You have to read your pathology report very closely..."Goggle" all of the words so that you understand the description of your cells.

Yes, there is always a chance, only you, your doctor and your DH can decide.
My friend took a chance and successfully had two kids after a dismal diagnosis.

Good Luck.


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by Charizanne, Sep 13, 2012
Hi everyone,

I have been also diagnosed with Complex Hyperplasia with Atypia, well my situation is rather difficult since I had breast cancer on 2005 and proud to be a survivor for 7 years now.  As per my ob I need to lower the estrogen in my body, I'm taking Provera since they can't give me anything that could affect me hormonally since it may trigger cancer.  Our plan is conserving it as much as possible since I am only 33 years old.  After 6 months of treatment got the same diagnosis still and like the others will go on another 3 months.  

I am wondering if there is any other alternative treatment for this.  

Or is their any regimen as far as diet or food to eat that can help.  I am single but I plan to have kids of my own but it's seems to be a challenge with this condition.

Charisse

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by anibelleee, Sep 25, 2012
Hi Ladies,

This will be a long one - but I hope it will be helpful.

I was diagnosed with Complex Endometrial Hyperplasia with Atypia on 8/31. I am 38, just married, and this was discovered as part of a D&C to prepare us for Clomid and pregnancy attempts. Now, all of that is on hold until we deal with this, of course. The OBGYN recommends hysterectomy, but I refuse to consider that as a first option. I have an appt with an oncologist tmo and another one 10/8 (since I know I'll want more than1 opinion), but I wanted to share some of the research I've done.

1. A Japanese study reviewed all other major studies on this condition. In women past child-bearing age, the recommendation is hysterectomy, since in 29% of cases, this will lead to cancer. However, in women of child-bearing age, they found that a partial endometrial resection (which I'm interpreting as a deeper D&C), followed by 3 months of GnRH agonist hormone therapy, can lead to regression in up to 50% of cases. If, after a follow up hysteroscopy/biopsy, the endometrium is normal, fertility treatments are recommended to lead to pregancy ASAP. If the results are still abnormal, you can repeat the drug therapy and try again. However, when family is complete, hysterectomy is still recommended to prevent all risk of cancer.

2. A friend of our family is a leading oncologist (though not in gynecology). He consulted his colleagues for an overview of the diagnosis. This is what he wrote back:
- It is a significant condition and needs immediate therapy.
- There MAY already be areas of invasive endometrial carcinoma present (this would require hysterectomy if it were the case).
- For older patients, hysterectomy is the treatment of choice, but
- For younger patients who wish to preserve fertility, it may be treated with progesterone +/- an IUD with progestins.
- Pregnancy itself may reverse the condition.
- Obesity is a significant risk factor and weight loss is recommended. (Note: I am obese, that's why he added this!)
- Even if an invasive tumor develops, it may still be treated with hysterectomy.
- The treatment of an invasive tumor occurring DURING pregnancy is obviously an issue.

3. I have been reading about NATURAL ways to reduce estrogen in the body (since excess estrogen is the cause). For about 5 weeks now, I have:
- Eaten only organic, non-processed, hormone-free produce, meats, and dairy. Yes, a recent article everyone is talking about said organic foods don't make a difference from a NUTRITIONAL standpoint, but the pesticides used (or animal hormones in meat/dairy) mimic estrogen in the body and/or stimulate it's production.
- Avoided soy like it's the plague- in any form - and for those of us exposed to excess estrogen, it is - it too mimics estrogen in the body, adding to the problem!
- Eaten minimum 1 cup cruciferous vegetables every day (broccoli, cauliflower, brussel sprouts, kale, cabbage, bok choy) - they contain a phytochemical that has been proven to reduce/fight cancer cells in breast, prostrate, and endometrial cancers.
- Received acupuncture - any of you who have pursued fertility treatments have probably seen that they now recommend it even in traditional western clinics - although not understood neccesarily, it DOES help fertility, hormone regulation, etc.
- Taken a variety of supplements to help regulate/metabolize estrogen: extra DHA/EPA, B6, Curcumin (tumeric extract, which has proven to fight cancer), green tea extract. I'm also drinking 32 oz a day of liver detoxifying teas - if your liver is not well, it can't metabolize estrogen out of the body. And, I'm drinking a super green-food smoothie with milled flax seed (also binds to/eliminates estrogen), protein powder, etc.
- Trying to eliminate sugar - this is my biggest struggle in all these changes! And eating alkaline foods over acidic - cancer cannot grow in an alkaline environment.
- Exercising, losing weight - 12 lbs in the last 30 days - all of this shift in foods has actually naturally led to weight loss - I'm not eating the processed, sugar-loaded crap I was before the diagnosis (ok, maybe 95% less of it!)

Now, you are asking, have I seen a difference? YES.

In Feb of this year, we had a chemical pregnancy (super-early miscarriage). Since then I've had no period - hence the D&C that led to this diagnosis. And, from tracking my cycle, I haven't been ovulating since then. And, not to over-share, but those of you who are trying for kids probably know about fertile cervical mucus - I had never had that - EVER. Three days ago, I'm suddenly ovulating (per OPK kit and obvious fertile mucus). So, I think at the very least, it has shifted my hormone balance back towards normal enough for me to ovulate!

So, no one can tell any of us what to do, but what terrifies me is how quick doctors are to recommend hysterectomy in every case - and, in particular, in women who still want children. My OBGYN actually told me that since I was already having fertility issues, it's one more reason to choose hysterectomy. But I believe in the body's ability to heal itself - if I do my part, that is.

If anyone is interested, I'm happy to share articles, etc. And I'll keep you posted on what the oncologists say.

Best of luck everyone - take care of yourselves!


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by elabaran, Oct 20, 2012
Hi,

I have had irregular period since I was 12 when I got my period for the first time(1992)(, I have spoken to numerous doctors about this and NO ONE, I mean NO ONE suggested there might be something wrong.  Only that Birth control pills were the solution to the problem.  After being on birth control for 7 years (2004)(started making me sick every time I took it) I had a baby girl(2006).  Still had abnormal bleeding but then it started where I would have a period for 2 weeks then a couple of day with no bleeding and again a period for 2 weeks, went to a gyn again and again the solution birth control or a anti-depressant because she thought I was depressed(2007).  No change gave up.  Finally went to a gyn again in 2011 he again suggested birth control, I explained to him THIS IS NOT NORMAL THERE HAS TO BE SOMETHING WRONG!!!!!!!!!  Finally he suggested we take a biopsy of the uterus lining (OMG the worst pain ever) test results came bad abnormal.  I was diagnosed with Complex Endometrial Hyperplasia No Atypia(Right away Hysterectomy was mentioned).  Now they are like ohhh this is serious, had a DNC in late 2011 - my understanding from the doctor was the DNC would remove the abnormal cells and that I needed to take progesterone and get retested in 6 months to see if it came back.  I chose to not take the medication when I told the doctor I did not take the meds after reading all the side effects of this medication - his attitude changed like well its your body, I can't believe you did not take the medication.  If you don't take the meds you will get cancer and you WILL have to have a hysterectomy.  Told him I will weigh my options and decide what to do.  Now my question is has anyone had this type of situation, how long does it take for Complex E.H. no atypia take to develop, why was this not caught earlier, why had no one suggested to do a biopsy earlier.  Just stressed out, would love to hear feedback.  Thx E.M.

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by wildkatzt, Oct 21, 2012
Hi Elabaran.

I have always known I have had a problem.  Diag with pcos at 18.  Always had painful periods since I started at 8.  Everytime went to drs with any probs  told because of pcos.  Just b4 last smear test i found a lump.  Went to gp and was told one of the cysts on the ovary was large and it was pushing on vagina hence a slight bulge.  Smear came back clear so thought nothing of it.  Periods carried on erratically flooding clots and labour like pains.  Never conceived but was told at hospital when i was 15 I was in labour. Wasnt but I was told the period pain was like end stage labour.
Well in may 2010  my period became regular and light and i thout maybe i now had progesteone in my body.  I knew i had trace progesterone but only barely enough to show on a blood test.  September all hell broke loose. finally in dec after 2 1/2 months of constant flooding and clots to go to drs.  Straight away said was due to pcos and should have a coil.  I refused this as fanily and my medical past was not happy with that.  So referred.  
in feb 2011 saw a consultant at hospital.  he said would do a hysteroscopy and insert a coil.  Again refused a coil.   he eventually agree to just do hysteroscopy.  Which took place 24th march. ( still bleeding constant since sept).  Finally got results on 24th may  and said complex endometrial hyperplasia.  had my op 2.5 weeks later.  my mri 2 days b4 op showed it had not spread.   When the biopsy results came back it showed it had turned to complex atypical endometrial hyperplasia with severe atypia with early signs of cancer.    I was lucky.  I found out that when i was 18 I should have been given a progesterone subsitute and something to reduce my oestrogen level.  with this i would not have needed a hysterectomy at 31.    If i had not had refused the coil and had it done.  I have been told my case was a severe case and i would not be here now.
I have not typed this to scare u but I have 2 adopted children and with my op they would be motherless again.  
my hyperpalsia changed in 2.5 months from my 1st biopsy.  if it was me i would take the tablets and deal with the side effects if it saved my life and my womb.  But saying that im happier healthier pain free and best of all period free.  so im glad i had the hysterectomy but would have rather it was done less urgent.
Good luck and take care.

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by SuziQPon, Nov 04, 2012
I am not glad that i had my hysterectomy, but what choices did I have?
I had a lot of bleeding for about a year. I thought that it was my body changes at the start of menopause (I was about 53).
My regular gyn did a PAP and found a tumor on my cervix. He had to remove it surgically in the O.R. and the pathologist identified it as being a "Complex Atypical Hyperplasic tumor." My gyn said that "This was NOT cancer," and I should wait.
I read the literature, and figured that 29-30% recurrence was was a high number. The doctor did not advise me of the risks of surgery, he did not take any scans, nor did he tell me that I could not take HRT after the surgery.

Anyway, after my surgery, the pathologist discovered that while there was no cancer, there was a borderline proliferating tumor in my left ovary. The ovary was also covered with fibroids and cysts. This ovary had caused me tremendous pain over the years. The tumor was not at an invasive stage. It was characterized as having a low malignant potential.
I was glad that we got that one out, just the same.

I did not do well after my surgery. I had experienced inner thigh weakness and other neurological problems.

This is the risk that you take. Most people do well after the surgery, but I did not.

Later it was found that I have a total blockage in the cervical neck area of my spine. No one has any idea of how this came about. Is it as the result of an injury, or M.S.??

I read that M.S. is counteracted by estrogen.

So the same estrogen that brings on cancer is used to keep other diseases at bay (diabetes, heart disease, M.S., etc.)

My point is that we need our ovaries. They regulate the hormones in our bodies and it is difficult to safely replace this with HRT, especially if your are like me and "prone to cancers."

It is a very personal decision, but do all of your homework, ask all of your questions, go home and think hard about it before you agree to a surgery that can change your life....sometimes not for the better.

At least I am still alive at this point, but facing a neck surgery that may make me paralyzed from the neck down.

I walked into the operating room without this problem. I recovered a very different woman physically.

Good Luck to all.

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by Xraybeth, Jan 09, 2013
I've just been diagnosed complex endometrial hyperplasia with atypia by way of D&C. I'm 35,not married and never had kids :( I started talking to my GYN doc about fertility investigation because me and my boyfriend wondered if i could get pregnant?  We first started with blood work during the 3-5th day of my menstrual cycle. My blood work come back with high estrogen levels. 2nd my GYN doc ordered a transvaginal ultrasound...the radiologist reading of that blew my mind...the impression was: 1. 2.2 cm Thickened endometrium, secondary to hyperplasia and endometrial carcinoma cannot be excluded. 2. Endometrial polyp 3. Partially collapsed, slightly irregular 1.6cm ovarian cyst.
With this report my GYN doc wanted rush and do a D & C, then he had the oncologist rush to read my pathology from the lining they took out of me. The very next day after D&C he called with the unfortunate finding... Complex hyperplasia with atypia. Ugh! He then very sensitively give me my two options I can do at this point, Progesterone therapy for 3 months or the dreaded Hysterectomy.
The biggest talk from my doc is my weight?, I weigh 140lbs at 5'5 and he said that's the very strange part of all this... I don't understand that really?
Now on top of all this my doc has sent me back for a 2nd ultrasound now looking for a possible tumor on my left ovary that they missed on 1st ultrasound... A estrogen secreting tumor? He told me that if found maybe that's the whole reason for hyperplasia in the 1st place?  Brain overload!
Can anyone help me sort through all this... I'm on the fence as to my choices, and I'm trying to get in to see a GYN oncologist b4 I make any choices. I'm very nervous of the progesterone therapy cause I don't want to gain weight and I know that's a side effect... Ugh I'm just so emotional with all this information :((

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by hopegirl2013, Feb 08, 2013
Hi,

I'm 30 and I was actually diagnosed back in May of 2012 with Endometrial Cancer Grade 1, well differentiated, just found in the polyp.  I was put on megace for 3 months (ended up really being 4 based on me switching doctors and getting on their D&C schedule), and guess what, ALL CLEAR!  I ended up getting pregnant 2 months later but had a miscarriage, which the RE thought was the medicine still messing with me in my system.  The pathology of the D&E came back with Complex Hyperplasia w/o Atypia.  They put me on a 3 month course of Provera (14 days a month), and in a few months will go back for another D&C.  I am literally seeing one of US News top 100 REs in the COUNTRY and she is actually a celebrity RE and guess what, she is not even concerned.  If I had cancer, it went away, and got pregnant, those of you who have Hyperplasia with or without atypia can too.  DO NOT STOP YOUR FIGHT if you want to get pregnant.  I've lost over 60 pounds and the doctor is not sure why I got the hyperplasia because I never had a thickened uterine lining, but from what family member doctors are telling me, I could have gotten it simply because I got pregnant and the body was preparing for the baby.  Obviously, I am being watched a LOT closer than other patients because of my history but I am telling you right now: DO NOT WORRY AND FIGHT FOR PREGNANCY!!!!  That's my two cents :-).

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by SuziQPon, Jun 02, 2013
If I was of childbearing age and wanted children, I would give it a try.
Have your baby first, then be closely monitored.

On the other hand, no one can make this important decision for you.
You could get cancer and die before you are able to have your kids.
I was told that I was 'rolling the dice" with complex atypical hyperplasia.

Good Luck.


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by SuziQPon, Jun 02, 2013
I also would work really hard to lose a lot of weight.
I lost 45 pounds in a year.
I feel so much better.

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by Appletini07, Jul 11, 2013
I was diagnosed with endometrial complex hyperplasia with atypia at 28 I was wanting children and that's how it was found cause I wasn't falling pregnant. I opted for having mirena iud put in under general with a d&c for 4 months then taken out and another d&c to check for hyperplasia and trying to fall pregnant within 6 months luckily I fell pregnant in the last month after bub was born had mirena put back in and told hyperplasia shouldn't come back as long as I have mirena in! I had taken out when my bub was 13 months to try for number 2 and fell within 2 months was amazed and delighted as researching bout hyperplasia n subsequent pregnancy was freaking me out. If u have option and r wanting kids have mirena put in, my only complaint about mirena is my moods!! Which now that I have my family going to see what my options r would prefer not to have hysterectomy but would love never to have to worry bout pre cancer cells either! Oh the joys of being a women:-) .

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by melissa26168, Sep 12, 2013
I was found to have Complex endometrial hyperplasia with atypia at the age of 26 very young anyways my doctor put on a pill called megace which its used for breast cancer and uterus cancer..took the pill for 3 months and had to have a dnc to find out if the bad cells went away and guess what they did.. so there is hope still other then a hysterectime and for childern I go back this month for a year check up to make sure its still clear then I'm on my way of trying for a baby :)

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by SuziQPon, Nov 24, 2013
I am glad that Appletini and melissa still have your uterus.
You are both really young, and it is worth it not to lose your female parts.
I hope you can get pregnant soon.
I had a lot of complications after my hysterectomy.
My immune system was down after my surgery, and I got the Shingles.
Soon after that tingling occurred in my thighs, legs, feet, and fingers.
My doctor thought it was diabetes, but later it was thought that I may have had a spinal cord injury from a virus.

I have difficulty walking.

Also do not allow a GYN to give you a hysterectomy using the daVinci robot.
The "jury is out" on this machine for gyn surgeries, and it is not good.

There are a lot of problems. I am one of them, so beware!
Do what you can to avoid a hysterectomy.
Keep a close watch for cancer as well.

Good Luck to everyone.

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by Lynn_H, Feb 18, 2014
I've also being diagnosed with Complex Hyperplasia with Atypia, I tried megace but they didn't work,I was with my gynie today & she has me booked in for surgery on Friday (very quick)for the mirena coil, a hysterectomy has been advised aswell but I'm trying to get pregnant first,she also said today that ivf won't work now unless we can clear the hyperplasia & if we do I've a 30% chance of getting pregnant.has anyone else had the coil & did ye have any success in getting pregnant when it was removed?

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