Hormones after total hysterectomy

[sippy]

Hello,
I was wondering if any of you all have been put on hormones after a total hysterectomy.  My doctor says there are too many risks and I don't need them...I am 38. I don't know what to expect here 2 weeks after surgery, I keep waiting for a hotflash or something weird to happen. :) What can happen if I don't take them? I've had nightmares of growing hair on my face or my voice getting manly. Are my fears real?  Can anyone share their experience or knowledge about hormones?

Thanks,
Sippy

[Gatsby]

Hey there!  Did you keep your ovaries?
~Tascha

[sippy]

My doctor didn't think it a good idea to keep the ovaries-so they took everything-no ovaries. :(

:)sippy

[Gatsby]

Ok.  It takes a little time for all of the hormones to leave your body, once they do you may have symptoms.  Mary53 is our resident bioidentical hormone expert!  She has done so much research.  I am sure she will recommend Dr. Uzzie Reiss' book.  You can also google "Dr Uzzie Reiss" and that will give you some info.  If you do go on hormones, bioidentical is the way to go.
I hope this helps!
~Tascha

[mamarabbit02]

HEY,
I'M LIKE YOU WANTING TO KNOW WHAT TO DO....I'M ONLY 5 DAYS POST OP.  THE DR. GAVE ME THE PATCH TO USE...BUT, TO WAIT AND SEE IF I ACTUALLY NEED THEM...SOME WOMEN DOES JUST FINE..HOW HAVE YOU BEEN FEELING?  ANY HOT FLASHES?

[turtledovemom]

As Gatsby said, Mary53 is extremely knowledgeable about this.  I had my remaining ovary removed this past April and started on the Climara patch about 6 weeks after the surgery.  The hot flashes had already started ( beastly stuff).  I was very fortunate in that my gyn/onc was very open to my questions and clearly laid out the options: HRT, antidepressents to ease going through the symptoms of menopause, do nothing.  I've been happy with the Climara, and pleasantly surprised at how the patch stayed on despite being down in Florida on vacation.  Keep reading, listen to what Mary has to say and keep an open mind.  I'm sure you'll find the path that suits you the best.  
peace,
Anne

[ShawnP]

I am 41 and my gyn and gyn/onc insist that I take hormone replacement therapy because I am too young.  What kind of risks do you have?  Any blood clotting disorders?  Let me know...Shawn

[Mary 53]

Sorry I cannot post much tonight. Husband had Kidney stone surgery today and is in pain and so I need and want to be available for him.

I did post some stuff recently on hormones (it is a jungle out there)....something to Mammarabbit, Tybear, and...oh...New Life Gal. Check posts from late last week and then over the weekend. Sunday morning, I think...(like you will know it is a morning post!).

Look for info on Bioidentical hormones. Check Dr. Erika's site (spell all together and add a dot com to get her website) Women to women (all together and a dot com) and Christiane Northrup, MD (google to get her webpage, although she did start women to women I believe.

There is lots to learn...but, well worth the research. You will be ahead of the game if you start to learn about all of this now. It is overwhelming at first, but it gets easier and it is life-enhancing for sure. Read, research, and then formulate your own opinion since there are SOOOO many opinions out there about all this. I have been studying them and taking them for six years (Bioidentical hormones...not HRT). My sister for 10 years.

Cannot say enough. And, I had my ovaries removed due to early ovarian cancer diagnosis (exploratory surgery...found the malignant cyst).

Off to care for my patient. Look for the posts and just print and study later...gosh, I sound like a teacher...

Take care, Mary

[sippy]

Mamarabbit,
Thanks for asking, I'm doing okay.  Really weak and still having pain, I'm 15 days out of surgery and wondering when the pain will go away.  How about you? How long did you stay in the hosp? One thing I've had a problem with is feeling like my bladder's been put in a different place and painful urination. I got put on something for bladder spasms. I don't know if what I'm feeling is a hotflash or not.  I live in TN so it's real hot and humid-hard to tell what's a hotflash for me.

ShawnP-The pathology findings from my surgery showed thrombosed veins in my ovary. The doc. said this was unusual so now I am being tested for FactorV, they tell me it's a bloodclotting disorder, I don't have a appt. w/ the hematologist until 7-11.

:) Sippy

[Teresa210]

I am sorry you are still in pain.  I think for me after a total hysterectomy, I had pain, related to that surgery, for about 6 or 7 weeks, decreasing a little every week.  I wondered what's this hotflash stuff about also for the first 2 or 3 weeks.  Then I got my first one - for me the first one was the worst one.  Sudden and I couldn't move, from head down to toe, my blood felt like lava dripping slowly down from the very top of my head until I was just burning up and drenched.  Never such a bad one ever again, but I tell you I was scared to death to ever go through that again.  I took only natural herbal remedies and I don't have any more hotflashes (took about 5 - 6 months).  I would never take any HRT unless you look up side effects first.  You will see all kinds of dangerous side effects which could put a person in worse condition (or major disease, like breast cancer) than they already are in.  I have heard some promising things about biodentical hormones, but I haven't had time to research long term effects and its not 100% natural, so I didn't do that either.  I haven't heard any negative side effects yet, but I think it is kind of new.

[dee26]

from: dee26

              I am 26 years old and just had total hysterectomy forr severe endometriosis and my doctor has given me hormones called Prometrium 200mg and vivelle-dot and those things gave me crazy mood swings so I took the patch off and stopped taking the prometrium. I have three little kids and I don't have time for the major mood swings and on top of that I run a daycare center. I just had my hysterectomy five weeks ago and I may have had five hot flashes all together. I am not taking anything now and I feel great; do I even need to?

[hopeshell]

No, you don't.  HRT has now raised the question of increasing breast cancer risk if you feel better without them...don't take them.  I can't take HRT since I as dx with cancer but back in the days I took the birth control pill I felt like you are describing.  Best wishes.  Shelly

[Cowgirldrdr]

Get tied on...you will be in the worst ride of your life. You are young. You will be walking down the street and bam....heat wave....even in snow storm. Your skin will get dry. You will wrinkle. You will have trouble thinking. Tell your doctor to shut up and put you on some hormones- you will need them. Try Premarin or some of the bioidentical ones. Try something. My boyfriend graduated number one in his medical class....he is appalled at the treatment of women. He is the author of medical board questions....take progesterone too....The symptoms will hit about 30 days after removal. Keep having sex and then you will not get "dry."
Good luck.
As a lawyer, I am appalled too.

[Mary 53]

Actually, first a comment to Cowgirldrdr: I would love to speak with your boyfriend...and, tell him  THANK YOU!!! WOW....I soooo agree with you and your boyfriend. There is so LITTLE information out there...so little correct information and even then there is disagreement! Or, women are brushed off regarding their health...regarding good hormone information and the fact that women do not have to suffer as they do. Theat there are "good" estrogens and "bad" ones, that the need for progesterone is critical (in my opinion) even if you DON'T have a uterus, and that there is actually much protection available from hormonal support if it is done correctly. I am not a fan of the synthetics, like Premarin, but I say this after researching this stuff since the year 2000.

There are so many "layers" to all this. I mainly study the bioidentical hormones, which actually Dee was on, since the Vivelle Patch is a bioidentical Estrogen, and Prometrium, which is a Bio Progesterone which most take orally (Dr. Northrup, in her book, "The Wisdom of Menopause" ...a must-read for all women in my opinion) says that although the manufacturer of Prometrium does not recommend it, you can open the capsule (I have done this) and put the cream on your body if you want to by-pass the liver and also if you want to avoid getting sleepy from the product. Some women want that and so they take the higher dose of Prometrium at night. The progesterone itself will make you calmer, but will not tire you out (unless the dose is too high....but you would get sleepy in about twenty minutes if this were the case) but it is a by-product of the hormone pill that causes the tiredness.

To Dee...you have had three children and so you might have more protection for awhile against the effects of not having the release of Progesterone any longer, but most women feel the effects of the loss of this hormone after a surgical menopause, in particular. I felt the effects of no progesterone and no testosterone three months after my surgery and I did not feel whole again until I was all balanced out with the bio estrogen and progesterone and also the testosterone.

Please arm yourself with information so that if a symptom comes about that you have trouble diagnosing....always look to hormones first. I had severe leg cramping for about six months and it did not decrease until my progesterone levels were balanced out. I was too low in this hormone and it was likely because I was in a stressful job and the progesterone that I was using (cream rubbed into the skin) was being made into cortisol. There is so much to learn regarding all of this, but you need to research it all so that you can understand how the body uses hormones to protect and how you need to stay balacned.

Northrup's book gives good information, too, to those who do not want to use the hormones unless it is as a last resort. I have more information regarding all of this on my profile and on my journal entry.

For Dee.....just remember, too, that your body has been through trauma due to the surgery and so it would take time to adjust hormonally anyway.

Well, good luck to all. This is a huge and controversial topic, I know....But, there should be something out there to safely help you. Just keep reserching.

Mary

[Mary 53]

Jan used to urge all of us to "Go Blue" and I was a bit resistant at first...now I love it and will carry on for Jan while she is not feeling all that well....so, if you are willing...go for a profile. Even if you just add that you are "female" or add your age....I think you will like having a profile. Great for updates...finding old posts...leaving messages, etc.

Welcome to the community,

Mary 53

[SusiefromOZ]

I had a total hysterectomy 4 weks ago due to stage 3 ovca. I haven't had any hot flushes yet but my ovaries had already shut down due to previous chemo and i did get the flushes back then. My question is - is it safe to go on HRT when you have ovca? I thought there was a link between ovca and an increase in ovca. I am 45 years old and not ready to deal with all the negatives of menopause but don't want to make things worse.

Susie

[burrowes]

hi i had a hysterectomy 6 years ago when i was diagnosed with ovarian cancer, i was 47 then and i chose not to have HRT because at that time there was a big issue about it being connected with ovarian and breast cancer. but beware.... i have since found out that i have ostioporisis and i have now got a bent spine and thining of the bones, please every one who chooses not to take hormone replacements, please look into taking supplements for this complaint because if you have been thrown into the menapause early you could end up the same as me.

julie

[trish54]

I just recently had a hysterectomy for Uterine Cancer and my gyn told me there was no way I would be put on HRT because of my family hist. for breast cancer... He took everything (tubes, ovaries, cervix) because this is the first place the cancer would return.  I don't know if bio-identicals would have the same effect, but I have yet to have all the hot flashes I had earlier in my menopause...

[Mary 53]

Hi,

On my way out the door to work, but I will say this...the bioidentical hormones are not HRT. Media (mis)information regarding hormones and lumping all of them into one big pool based on the study in 2002 Women's initiative had everyone running away...including those interested in the Bio's.

I just posted some info on my profile regarding the bio's...although I will post more since right now I cannot recall if I posted the information on the difference between the two in more detail. I will check in later, or you can leave a message. Ovarian cancer cells were found in a cyst that was drained and so that was why I had my hysterectomy in 2000. My oncologist started me on the Vivelle patch (a bio) but I later learned that it needed to be supplemented with Bio Progesterone...I am getting off track here. This is a passionate subject for me in case you cannot tell :) but it is controversial, too. There are women who cannot take estrogen for sure, but more women than not can take some supplementation according to my research. And, why more women are not told of the healthful benefits of adding Bio Progesterone is beyone me.

"Wisdom of Menopause" is a great resource and gives many options and explanations...whether you take hormonal supplementation or not.

Late for work :)))

Mary

[justscore]

I am 38 and had 2 laparotomies in 2 years.  The 2nd was last April and I started MAJOR hot flashes the day after surgery.  I am on a very low dose of hormones.  My Doc says not to worry.........I still worry.  It's a hard decision..............  If I didn't have hot flashes or night sweats or insomnia, I would not have chosen HRT.

Good luck and good health.

[OzBron]

I have opted for HRT largely for the osteo prevention and other aging aspects too including the foggy headedness associated with loss of progesterone (I think I got that the right way round). Quality of life is important and I couldn't imagine dealing with the hot flushes and night sweats I was having for another 50 years (I am only 32). I am taking the lowest I can and am checking out the Bio options. The bio patch didn't agree with me (I have very sensitive skin which reacts to adhesives and I ended up with lovely red hexagons whereever I put it!) There is a low dose BioIdentical vaginal ring for eostrogen replacement that seems interesting as it is a very low dose but it is too new to have much data.
One thing you can do is to get your tumours checked for eostrogen receptor activity. If your tumours were highly eostrogen receptor actiev then in threory increased oestrogen will have a negative result. OVCA related to Breast Cancer (e.g. through BRAC gene) will likely be highly active. But if the activity is low then the risk is not greatly increased.
Remember also that for young women, the birth control pill/hormones was found to be protective and had almost the reverse risks to older menapusal women. So what the risk factors are for young women in surgical menapause is a difficult one and there is little to no data on this.
As Mary said earlier, do your own research and be open minded and formulate your own thoughts and plan that you feel comfortable with. If you ask 10 doctors you will get 10 different answers and many wont actually be based on more than rumour ( as they often wont have actually done any research).
I have spent a fair bit of time researching this and I do feel empowered. Your life - your decision.

[Skyda]

I am 38 years old and have problem with my periods my whole life. I have had 4 kids and I am finally at my witts end. I have bled now for  3 months straight. My doctor has scheduled me for a complete hysterectomy next month, He is taking everything ovaries and appendixs. He said they sometimes do that just to have one less thing to worry about later. I m a little concerned about the hormone therapy afterwards. He told me he could give me a pill or patch. Does anyone have any suggestions for which is best?

[Mary 53]

I am sorry that you are having to go through this. You probably did not come here looking for opinions, but suggestions. However, I have not been able to get your post out of my mind since I got home from work and read this.

It sounds like you trust your doctor...always a good thing. But, have you had a second or even a third opinion? I obviously don't know your GYN history, but from the things I do know just in general, it sounds as if your body is out of whack hormonally.

The hysterectomy just sounds like such a drastic measure to me. I think I am finished with sugar coating my message...Surgical menopause stinks. Having said that, practically all women on this forum have not had much of a choice regarding this issue since once cancer is found...they usually take everything.

And, then there is the whole controversy regarding hormonal therapy and the tragic job the media has done scaring women half to death by lumping all hormones into one category and calling all of them "bad" even though there are some good alternatives out there.

I use three hormones and pay about $100.00 a month for them (and that is with help from insurance)...have for 7 years and will for the rest of my life. I don't use HRT synthetic drugs, but instead, bioidentical estrogen, progesterone, and testosterone. The Progesterone is the critical one in my opinion, but it is not able to be patented since once it gets in our body it acts the same as the progesterone we've produced naturally. So, doctors often don't have much information on this, or they have misinformation on it since Progesterone is often confused with the icky Progestins that are used in birth control pills and Provera and Prempro. And, many doctors think you don't need the hormone if you don't have a uterus.....EEEK!!!!  We have receptors for this hormone in our brains, our lungs, etc. It helps alleviate foggy thinking, bone loss, soft tissue joint/muscle pains, etc.

PLEASE research this further before you make a final decision. Given that not all women do not respond equally to the removal of the ovaries (and, remember that even the uterus produces hormones) not all are going to suffer in the same way, but this only makes matters more confusing.

Two years ago I suffered for six months with horrible leg cramps. It was not until I was tested and found that my levels of Progesterone were too low (even though I'd supplemented with this for years) and the leg cramps were a symtom of that. But, it took trial and error to figure this out and actually I had to figure this out on my own. A new hormone specialist had changed my script for progesterone from a cream to an oral product and it was then that I started having problems.

This doctor suggested that this was all in my head and that raising my level of progesterone, and changing from an oral bioidentical back to a cream bioidentical was not going to help. Luckily, I listened to my instinct...changed "hormone specialist" doctors and after my last visit with him, I ran to the store to get some over the counter progesterone cream just to try to kick start replenishing the hormone I was so low in...and, honestly, the help was almost instant. Leg cramps gone. If I'd waited longer, it would have taken longer for the levels of this hormone to build back up. I now see an awesome specialist and in fact have had to go to a rather high dose of progesterone just to keep me sane.

OK....lots of info here. If you add a profile to your name on this site, your name will turn blue and you can exchange messages with others...check your old posts, etc. I encourage you to try it. I was resistant at first, but now I really see the advantages having a profile.

I named some resources that might prove to be helpful for you. They are listed on my profile if you want to check them out.

Good luck to you. I do hope you start to feel well again soon.

Mary

[chelan3]

Hi, I had a TAH at age 34 due to being diagnosed with borderline ovca a year and half earlier.  My surgeon said he wouldn't do the surgery unless I took ET.  I said I wouldn't have the surgery unless he let me make the decision!  I won!  I choose not to have ET.  I'm overweight and estrogren stores away in fat cells.  I'm 39 now and still very rarely have hot flashes, even then there are not severe.  I maybe have a hot flash once every 2-3 months. The only thing I really do notice, is at night, I do get warm at night, but an open window helps with that.   I saw a menapause specialist at the urging of my sis-in-law.  This dr wanted me on a high dose of ET, testosterone, and something else I don't remember.  She told me I wouldn't be able to function in my job without it.  I'm doing just fine.  My family dr is supportive.  If I don't have major symptoms, he agress with me, why should I take it.  I'm careful to take extra calcium and vitamin D, I also had a baseline bone density test done.   I'm happy with my decision.  But the decision is personal, and you have to weigh the pros and cons.  If you find it tough for you, you could always go on a low dose of ET and see how it goes.  Or try the bioidentical hormones, or other therapies out there for helping menapause symptoms.  

Take care,
Debbie

[chelan3]

Oh by the way, I don't think my voice turned manly, and I do get one or two stubborn chin hairs a month, but tweezers are good for that!