Hi everyone – hope you are all doing well!
site looks great, thanks a million to Kathleen and all at EAofI for getting it all back up and running. I must renew my membership soon when it runs out! I have millions of questions as usual and glad to be back on here to hopefully be able to chat about things. If I have maybe put this comment in the wrong box and this is just for short hellos, feel free to move to a different one. My main question is about pain after surgery or pain when (you hope!), endo has been removed. (sorry, a bit wandering below)
I got excision surgery in Birmingham in October (funded by Laya) and maybe naively thought it would be the surgery to fix all! 🙂 (Don’t want to discourage anyone from getting proper excision surgery with an expert as it seems for some people it can be the surgery to fix all – or more importantly fix a lot of things that would otherwise just keep getting worse. Some people have very positive stories!). Anyway, I’ve just had my period and was in the so familiar, worst pain (ready to vomit, sweating, faint) ever and it was so disheartening. I have read and been told that there are lots of other reasons to still have the same pain after surgery and pelvic physio etc can help, as can just waiting to see as could still be healing. (I keep meaning to find a pelvic physio but am reluctant as it seems so specialised and don’t want to waste money on physios who don’t know about endo and could make things worse by tightening things up etc. But I will research more)
So I start trying to work things out again myself (having spent last year researching the whole excision surgery route) -it’s hard to trust the Irish gynes even for non endo stuff now (well, I have lost a lot of trust in them anyway). And then if it did turn out unluckily to be endo back, they wouldn’t have the expertise to see that! I’m wondering at this point is it something else that is causing this pain now? I was told I have a small fibroid, maybe it’s this? Could this have been causing all the pain all along?? Or maybe I have adenomyosis – the surgeon mentioned it after surgery but didn’t seem clear if I had or hadn’t. Mentioned it could be fibroids either. I suppose I could go back to him, but then I don’t want any more surgeries yet, and surgeons seem to like surgery solutions!If it is adenoymosis and I don’t want a hysterectomy, am I stuck with this period pain until menopause??
I’m wondering is there any chance it could be something simple like a need for more exercise or less bad food if it’s just prostaglandins causing the pain – from what I can gather, people can have some pain even if they never had endo? (or is that actually correct?) [I’m not saying more exercise or less bad food etc can totally solve endometriosis if you haven’t had it removed, as from what I understand, it can’t – though might help symptoms a bit! But am wondering about more simple period pain – or is that another of the myths we’ve been fed and maybe nearly all of period pain is endo related??]
I have noticed lots of improvements in bowel (had endo removed from here), and bloating etc so I am only left with pain at my period it seems.
Aghhhhh… anyway, if anyone else has a similar stories or ideas or tips, I’d love to hear them! Or just to say hello 🙂