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Ovarian Cancer Community
This patient support community is for discussions relating to ovarian cancer, biopsy, chemotherapy, clinical trials, genetics, hysterectomy, immunotherapy, radiation therapy, screening, and staging.
Yes, endo can be in the ovaries and they may not pick it up as a cyst on a scan, but just say one ovary is larger than the other or something like that (if it is in one ovary and not the other). That's what happened to me years ago when I had an endometrioma. The other ovary had endo cysts w/in it and it was also removed. That extent of the endo didn't show up on the scans I had. It was an ugly surprise during surgery.
I had also been scared b/c they were doing doppler for blood flow on the thing when I was getting scanned and it was obviously showing something. They kept telling me that that's normal, but you know you always think of cancer making its own blood supply. I found a couple of articles talking about how endo can set up its own blood supply, so I kept trying to take small comfort in that. Then today at the post-op, the Dr had pictures showing the endometrioma w/ its own blood supply. Just wanted to share that in case anyone else is freaking out about the blood supply thing being a bad sign.
~Tascha
They don't *have* to remove anything that you don't want them to remove. Remember you are in control of that. You just make your wishes clear before surgery and consent only to what you want to consent to.
I consented to have both ovaries and my uterus removed ahead of time in the event that endo was all over the place (which turned out to be the case) because I am done having children, I'm 44, and I had other health problems which I hoped killing off the endo for good (by taking away estrogen) would help. This was the best decision for me at this time. My uterus was only left in b/c it was so involved w/ my bowel that I would have had to have my bowel resected to get it out.
When I was younger and had endo, I only agreed to removal of the ovarian endometrioma - not even the affected ovary. I wanted to have children and I wanted my fertility preserved. So it's all really up to you and the factors in your life that would influence your decision. The Drs can give their advice and you can weigh it and get 2nd and 3rd opinions etc.
I like to ask Drs what they would do in my situation (if they are a woman) or if it's a man, what they would advise their wives or daughters to do. It sort of gets them to approach it more personally and think about you as a person w/ a life instead of "a case of endometriosis" or other problem. Then they also are less apt to take your questioning personally b/c they know you are thinking of it on a personal level instead of rejecting or questioning their advice.
Also I think the CFS etc can be related to your endo and so there is hope there that getting the endo under control could help with the symptoms of these other problems.
Since you are not trying to have children right now, you could always opt to try simulating pregnancy or menopause w/ either BC pills (where you never get your pd) or something like Lupron where you trick your body into believing it's in menopause. I found the Lupron to be really tough - hot flashes and sweats. But maybe you wouldn't and you could stand to do it for a few months (they recommended 4-6 for me). At least that's reversible - you can stop it any time and don't lose organs you can't ever replace.
ALso, you may find that once you get surgery, things get better.
Did your endo improve as far as you can tell after you had your child? Many people see a significant improvement after pregnancy, but some people end up w/ a worse case (just like other autoimmune diseases during pregnancies). I was thinking if you saw an improvement after pregnancy, maybe that would be a clue to try the simulated pregnancy route after you get surgery?
It can grow VERY fast. My doctor told me mine was there probably no longer than 6 months, most likely only a couple.
Hope it helps.
Michele K.
Cornpatch
i understand your chronic pain as well i have lived it for almost 13 yrs now. I dont care what it takes at this moment i want it all gone so that i dont feel like this anymore
I am 38 years old and have two beautiful daughters, 19 and 15. I had my wound taken out at age 29, due due to Endo. I wasn't home a week when I would fall to the floor in pain, they told me it would get better, its takes about 6 months to get over the surgery. I waited patiently, in 6 months I was no better. I switched doctors and the surgery removed my tube due to Endo. The doctor cleaned up my two ovaries be