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I had abdominal myomectomy (2 large ones) 1.5 years ago and my GYN discovered severe endometriosis. Now I have grown very large cysts on each ovary with several small ones, a new fibroid, plus the endo. She thinks I should have a TAH with BSO as soon as possible. Monday I go to the GYN oncologist for a consult although she doesn't think I have cancer. The oncologist is also a pelvic reconstructive surgeon who will need to do my surgery since it is beyond my GYN's scope due to the extensive endo. It is all happening so fast. I am 40 and am so scared to lose both ovaries. Has anyone else had all of these diseases at once and been told the same?
I had endometriosis, fibroids, one small ovarian cyst and probable adenomysosis (still waiting on lab results).
I had an SAH/BSO with endo removal 3.5 weeks ago. I did go onto Lupron for six weeks prior to surgery and the Gyn and I had decided we'd go for an SAH and retain ovaries if it looked like the Lupron had suppressed the endo totally. Unfortunately, when she got in there and removed the uterus she found large patches of aggressive endo still happily in place depsite the Lupron so she had to shave/burn all that out and remove my ovaries.
I've had trouble emotionally adjusting to the ovary removal but I'm doing OK and I know I'll be fine once I've gone through the grieving process and adapted to my new status. I'm still a little fragile, my sister was rather insensitive last week and making jokes about how lucky I am to not have my ovaries any more but I coped.
Physically I'm doing really well. The pain from my surgery has now, after three weeks, lessened to being around half of what my constant background pain was and around a 10% of what my period pain was. Give it another 2-3 weeks and I'm hoping I'll be pain free for the first time in over 20yrs.
For me I chose to have the surgery and take everything out in one go to avoid repeat surgeries. My GYN told me that leaving the ovaries in and then having to go back and do repeat surgeries for endo removal and/or ovary removal in a couple of years time is way more complicated so the healing and risk of complications and adhesion nasties is a LOT higher.
If we had tried it a few years ago before the fibroids and endo got so bad it might have been worth trying a mirena coil or the hormone therapy routes.
I tried the hormone route around 15yrs ago and the pain was no different, the amount of blood loss was made a LOT worse and the side effects from the hormone drugs were hideous. I bloated like a giant, pasty white whale, had mood swings so bad I lost my friends and nearly lost my job and I started growing facial and chest hair. I had all my endo symptoms plus all the side effects so called a halt to the treatment after 8 months of hell. The GYN at the time wrote on my notes that I had refused treatment and I was signed off from their care and refused further help as I was labelled as uncooperative.
With regard to the mirena coil I don't know anyone who got on well with it who had severe endo and fibroids. Two friends are using it but it has its own side effects and hasn't removed their problems, just alleviated them a little.
For me the surgical route just seemed the best solution, get rid of the problem once and for all. I'm also pretty sure I'm not going onto HRT either as that can trigger the endo to grow back and I never want to go through surgery like this again.
I hope that helps a little, If you've got any more questions just ask.
Whether or not to keep an ovary, or even part of one, is definitely a very important discussion to have with your surgeon before your hysterectomy. Since your doctor does not believe that it is ca, this is a better possibility. The benefits of having at least one ovary can outweigh the risk of endometriosis returning. I say this because many women end up dealing with a number of different issues post op that make them consider using hrt. As (((Ruby2010))) mentioned, this is something many women avoid due to the possibility of recurrence. It is also important to consider, however, that a recurrence can take place even with the removal of both ovaries. My doctor considered having an oncological surgeon on hand to assist with surgery, but hesitated because in her own experience they have tended to want to remove both ovaries as a preventative measure. I don't tell you this to discourage you from having your surgery performed by an oncololgist. On the contrary, they do a remarkable job at endo removal. I just tell you this to encourage you to have this discussion with your surgeon so that you know exactly what the best option for YOU is. All the best to you!
Thanks to both for the replies. I think the worry is that if any organs are kept, the endo may get me later and I would have to have surgery again. I already had surgery last year. Chances are I would sprout another cyst. I have been in perimenopause for 5-6 years and am probably approaching menopause soon anyway. Thanks.
Good luck and sorry your going through all this, I had endometriosis, fibroids, ovarian cyst ,adenomysosis and had a TAH but kept my ovaries do to my age. and for me i am doing so beter still have the cyst but feeling beter. good luck
When endometriosis is thrown into the mix, it does make things more complicated! I can understand your concern that if any organs are left then endo could get you later. However, endometriosis can be an issue even if all of your reproductive organs are removed. A hysterectomy does not cure endo. An oophorectomy does not cure endo. There really is no cure for endometriosis. The key is the actual excision of the endometriosis by a very skilled physician.
As others have mentioned, I would really suggest a consult with an endometriosis specialist. Find somebody who is exceptionally skilled and knowledgeable regarding endometriosis. Talk to him/her about your specific situation and what might be best for you.
I have both of my ovaries even though I have stage IV endometriosis. Neither my local GYN or endometriosis specialist felt it was best for me to have them removed. My GYN cleaned up the endo as best he could during my first lap and hysterectomy. Seven years later I traveled to an endometriosis specialist who was able to clean up all the endo that had purposely been left behind and the new growth I had from that endo. For each of my surgeries my ovaries have been healthy so they have been cleaned up and left.
I have had issues with cysts but so far they have all eventually resolved on their own (hemorrhagic, complex, functional).
I never had fibroids so I don't have any experience to share on those.
I wish you all the best and hope that you the doctor today was able to answer many of your questions!
I had all 3 as well and pushed off the hysterectomy 10 years due to my age. The bad thing with waiting is scar tissue starts to adhere everything. Which creates much larger issues. Unfortunately wether we keep all organs or not is almost out of our hands. It is what the Dr finds.
My Dr really wanted to save my ovaries but did not have a choice due to where he found them and the condition they were in.
I am so glad your Dr knows their limits- that is the sign of a great Dr, and that youwill see someone who specializes in Reconstruction. That makes a huge difference!
Best wishes on your journey. You will find a huge amount of support here! All you need to do is post! And we will be there.
Thanks JennyVS. You're right about them not really knowing for sure until they get in there to do the surgery. I guess in a way I'm lucky that I had abdominal myomectomy last year and my GYN could see the poor shape everything was in. We hoped with the large fibroids gone, I would be OK ( I looked 6 months preg.). Now--a 15 cm cyst on one side and a 7cm on the other....I forgot to post that in my original post. I'm kind of a train wreck and can't keep having surgery every year. The specialist will be great at getting the endo cleaned up. He's actually the director of GYN oncology at the medical school, so I should be in good hands. They are going to call me tomorrow with my surgery date. Thanks....