Okay, here is my story. Please bear with me:
I had moderate-severe endometriosis diagnosed 8 years ago, after about 15 years of pain. The surgeon told me I was "riddled" with it - it was very widespread. He removed some from ovaries and bowels, and he said he got rid of more, but was very clear that he had not got it all because much of it was microscopic and there was so much of it all over the place. Following surgery, my symptoms were much improved and I had two successful pregnancies.
However, following that I still had bad periods and cyclic pelvic, hip and leg pain. I had another laparoscopy with a different surgeon, but was very surprised to be told that she found no endometriosis. There were growths in my uterus and it was enlarged, so she thought I may have adenomyosis. Following a trial of Prostap (which did reduce symptoms) I went on to have a hysterectomy, but I retained my ovaries due to only being in my early thirties. Again, she says she saw no endometriosis when doing the hysterectomy.
Following hysterectomy, I was able to tell when my period would have been because I had cyclic pelvic and leg pain. (My pain got worse for a week every month, and also for a handful of days in the middle of the month, which I think it may be ovulation time?) The pattern continued for about 9 months, but has since been messier. However, I still get pain that gets a lot worse and then improves again, always in my pelvis and going down my legs.
My pain improved during pregnancies, and during breastfeeding. It also improved on Prostap.
Here are my questions:
1 Is it possible I still have those original endometrial implants, but that they have not grown and so are still microscopic, but cause symptoms? So, monthly hormones cause them to bleed, but the implants are not growing?
2 I am confused why my second surgeon could not find endometriosis, but my first surgeon was adamant he had left a fair amount behind. Is it possible my new surgeon is just not good at finding endometriosis and therefore I should ask for a second opinion?
3 Does anyone else with endometriosis find their pain gets worse with ovulation (pain lasts a few days)?
4 Does anyone else get leg pain with their pelvic pain?
5 I have pain all the time, but it gets worse cyclically - can this still be endometriosis if I am never pain free?
6 I don't want to ask for my ovaries out because I am not keen on a surgically induced menopause and hormones send me crazy as it is, so HRT scares me. And anyway, would HRT cancel out the benefit of removing the ovaries? I would do it if it was clear that it would help me. But it is about as clear as mud at the moment!
Sorry for the long post. Thank you if you have made it this far. Any information anybody could give me on what might be going on would be really appreciated.
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General health
Endometriosis - questions - what is going on?
15 replies
wonderwoo · 04/09/2016 21:30
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