Surprise: Endometriosis!

I had a TAH this June and was surprised to wake up and find that the problem had been endometriosis. I had had no indications or problems and we went into surgery thinking it was ovarian cancer. I am in my early thirties and am concerned about maintaining health without my ovaries. I am interested in any input from others who had endo and a TAH mainly pertaining to bioidentical hormones and the concern about endo coming back.

Hi Bree 28,
First of all, congratulations on the non-cancer diagnosis. What a relief that must have been! While I did not have an abdominal hysterectomy, I did have a total hysterectomy due to endometriosis just two weeks ago. My OB and I discussed hormone replacement and both decided that for me, it was not in my best interest, due to both the endometriosis and the fact that my mother had breast cancer. The risks just don't outweigh the benefits for me. From what I have read and discussed with my doc, if you have or had endo then the hormone replacements do have a risk of creating new endo growth, especially within the first year. Her recommendation to me was to try to go without any hormone replacement for at least the first year, but if my menopausal symptoms were too difficult to manage then she would put me on the very smallest dose and monitor me very carefully. After two surgeries the last thing I want is another surgery for endo growth! My plan is to try the natural herbal supplements if/when the menopausal symptoms get bothersome, which luckily they are pretty mild right now.
Anyways, sorry this was so long but I hope it was helpful in some way. I wish you the best in your recovery!

Stephanie, 39
Total RALH/BSO ~ 6-22-09

Hi Bree28,

I had a TAH on 7/3 which had been original scheduled as a less invasive LAVH. I had diagnosed fibroids which were pressing on bladder and colon and causing problems. When Doc got in with the scope, she also found Stage IV endo (apparently the worst) on my ovaries, bladder, and colon. Doc says she is confident she got 99.9% of it and wants me to go on estrogen only HRT. She says a woman without a uterus does not need progesterone. I have no other risk factors for HRT. I'm nervous because when I read posts here and in the endo section here, I see that it seems it's nearly impossible to 'get it all' and there can be problems with taking estrogen and having endo return/regrow. I never had a lot of pain, just pain at ovulation and managable cramps during my periods. Mostly I had urinary urgency and HORRIBLE constipation. I also see where sometimes progesterone is recommended in combo with estrogen to help keep endo in check. So I'm really struggling with what to do. Like I said, I specifically asked my Doc about having problems with endo recurring and she was very confident that I would not. I'd like to hear from some of the other sisters out there as to whether or not I should rely on her confidence.

Guess I'm going to have to figure out this 'signature' thing soon.

sashaturbo,

Bear with me, I'm still learning all the lingo/acronyms....so do you still have your ovaries? (you referenced the removal of uterus and the doctor saying you don't need progesterone, so I was wondering about the ovaries) At this point, I have found two resources (in addition to this site) to be helpful for me. One is the endometriosis association (specifically the Endometriosis Sourcebook by Mary Lou Ballweg) and the other is a book called Hormones, Health, and Happiness (by Steven F. Kotze). All of the endo sites and books I have read have recommended waiting a minimum of 3 months post-op before starting any hormone therapy in order to allow any remaining endo to "die". My GYN agrees, so that's what I'm doing. Then I plan to start taking bioidentical hormones (see second book). My best friend went through this exact thing (hysterectomy/oophorectomy because of endo) and has been taking them for the last four years with success. She gets a prescription through her doctor to a compounding pharmacist and takes a combo of estradiol/estriole, progesterone, testosterone, and DHEA (all natural, bioidentical hormones). Several of the books I have read have talked about the importance of balancing all these and definitely not just taking estrogen (b/c estrogen dominance is not helpful to the body). I have not yet begun that part of the process, but it's what I've been reading about. Not sure if that's helpful or not...but thought I'd share it.

-Bree28

I have had endo for 10yrs. I have had 3 surgeries and done Lupron 2x (it is a shot that puts you in temporary menopause to kill off endo). It was stage 4 and stage 3. I had 1 child before and 1 after the diagnosis and now I have finally had enough of the pain and am scheduled for a TAH with ovaries and tubes removed. I am 36 and my dr wants to try and avoid the HRT for as long as possible because of possible side effects. While I was on the Lupron I tried a progestrone cream and that helped with the hot flashes and mood swings and it did not worsen the endo. As I understand it endo feels off the estrogen produced in our bodies so it is possible that if endo is left behind after hysterectomy and you use certain estrogen products it can feed the endo and cause problems down the road that is why they say wait as long as possible before using them that way any remaining endo will die out.

Bree28,

They did take the ovaries too. Sorry I didn't clarify that - still on pain meds from surgery and I think I have a bit of brain fog. Also, this is all just so overwhelming. Thanks sooooo much for the endo info - I will check into it.

sashaturbo,

The brain fog is normal and will lift. Hang in there!

I completely understand about it all being overwhelming. I experienced the same thing and was mainly just shocked and a little angered that it turned out to be endo and we had no idea (though I'm so thankful it wasn't cancer).

Please know that it is not for me to argue against your doctor. But I have spent the last several weeks reading books and talking with my friend and cannot find any credible source that is knowledgeable about endo that believes a hysterectomy will cure it. My surgeon said it would but the more I read the more I realized that this is a misconception. So, my advice is to check out the two books and work on building up a knowledge base before starting anything.

Bree28

I would be one of those examples of when the hysterectomy is NOT the cure. Ive' had endo for 15+ years and finally agreed andhad my hysterectomy in 6/07. The doc put me on estrogen which I was concerned about causing regrowth and lucky me it came back.

Just had another surgery 2 weeks ago (6/09) with another 6 inch scar that turns out was, per the lab, "residual ovarian tissue (not sure how that works since oth were removed in 07??) and a benign endometromia that was pressing on my urterer , bundle of nerves and main artery for my right leg. And to make it even more fun my bowels were all pulled in the wrong direction placing a few "kinks" which explains the extreme pain I was having. Very thankful I had a good GI specialist in addition to my OB surgeon so no resection, just endo removal.

Recovering well and now on progesterone and estrogen to make sure nothing grows back but holding my breath I am not back in 2 years...

Not sure what the cure is but have tried many different things over the years... Surgery is getting VERY old and so is the pain.

I am just exploring the bioidentical stuff so thanks for the info I will continue to research and hopefully one day there will be a cure!

I want to drop in here with some info on a few of the comments on this thread and see if I can help clarify a few things!

First, there is no cure for endometriosis and certainly removing the uterus (hysterectomy) will not cure any endo that is here and there and every where in the body. However, a skilled surgeon (such as an endometriosis specialist) who is able to excise the actual endometriosis from where ever it resides can offer the best outcome. Even they do not have a 100% success rate, but it gets pretty close! Keep in mind, any endo that is missed by any surgeon does have the potential for growing and spreading--more easily in some women than others based on a lot of different criteria.

Second, when it comes to hormones and endometriosis, we each have to weigh our own pros and cons and do what is best for us. No two of us will make the same decision, even with the same circumstances. What is right for me may not be right for anyone else. For instance, even with stage IV endo it was determined (and reiterated by my endometriosis specialist) that keeping my ovaries was best for me. So I have plenty of all kinds of hormones, even the estrogen that can fuel endometriosis. Each of us has to find a knowledgeable doctor and sit down and discuss our specific situation to determine what is best for us. Yes, estrogen could allow for endometriosis recurrence. But guess what? There are ladies who do not use any estrogen and they have still experience endometriosis recurrence! There is no perfect answer and certainly not a "one size fits all" answer! Each of us does need to keep in mind that hormones, especially estrogen, play an important role in our overall health so we have to way our overall health needs with the risk of endo recurrence.

Next, not all doctors agree that waiting three/six/twelve months to use HRT is effective. Some doctors, including one of the world's most knowledgeable endometriosis specialists, believes that any endo that is missed will grow and spread once there is estrogen present as he does not feel the endo "dies" off at all. In his practice/research/etc. he has found that the endo goes more into remission and then plumps right back up when estrogen is introduced.

Many doctors do have ladies wait for a set period of time before using HRT and each doctor has his/her opinion for doing so backed by medical research/experience/etc. There is varying success for anyone trying anything as we are each unique individuals and our bodies are not going to respond in the exact same manner.

Along these lines are issues with plant estrogens. Not all doctors feel they are a problem but others do. Plant estrogens (such as found in soy, black cohosh) can build up in the system and there is belief that they can allow endo to grow. Also, our bodies can continue to make estrogen by converting dietary cholesterol to progesterone, then to testosterone and then on to estrogen. Our fat cells can produce and store estrogen. And to top it off, endo has been known to create its own supply of estrogen! Thus, it can be hard for some of us to be 100% estrogen free even if we try. It would depend on how efficient our body was to any of the above!

While women without a uterus do not need progesterone to help with the endometrial lining they no longer have, that is not necessarily true for those of us with endo. Endometriosis is sort of displaced endometrial lining and thus progesterone can be effective for reducing our endometriosis. There are many doctors who will only give estrogen replacement to their endometriosis patients if they also give some type of progesterone or progestin to help combat the estrogen's effect on any remaining endo.

We do have a lot of information on the site about hormones you can read through to learn all about the various types. We also have www.hormonejungle.com where you might find a lot of info! Keep in mind, those of us with endo are unique so what works for women without endo might not work for us and many women who do not have endo do not understand our particular situation--you know, the one where we are between a rock and a hard place!

In the end we each have to do what is best for us. I have had endometriosis recurrence but it wasn't necessarily because I kept my ovaries. My GYN had not been able to remove all of the endo safely and thus specifically left some on my bowel walls. Thus, I was never really endo free. My surgery last year was specifically for that endo and adhesions and I did travel to an endometriosis specialist as I needed some very specific and precise skills and knowledge regarding endo. Again, I kept my ovaries as that is what is best for me.

All the information about endometriosis can be overwhelming! It can also be confusing! And at times, I have found it contradictory! I found it helpful when researching to consider the source. There are some authors out there who are looking at things from a "unique" perspective! I would also try to verify info I found--meaning I wanted the same information documented in more than one place! We do have an extensive Endometriosis Resources as well!

In the end we each have to do what is best for us and respect the decisions of others!

	Quote:
Originally Posted by Leenie4 Just had another surgery 2 weeks ago (6/09) with another 6 inch scar that turns out was, per the lab, "residual ovarian tissue (not sure how that works since oth were removed in 07??)

I forgot last night! You can do a site search (and web search) for Ovarian Remnant Syndrome (ORS) and find where others have dealt with this issue. If a tiny piece or cell of the ovary is missed, it can regrow! Ovaries can and do grow back, just as tonsils, adenoids -- any glandular tissue can.