Complex Atypical Endometrial Hyperplasia

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

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

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.  

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.

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

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.  

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.

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.

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.

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

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

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?

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!

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?

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.

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).

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.

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!!

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!

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.

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.

Bigon77 - Godspeed!!!!

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!!!!

By the way, my personal email address is:  ***@****.  Thank you, again.

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

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.

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.

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 !

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.

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. :(

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.

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.