It's taken me so long to post here. I knew I would eventually, but I also knew I wasn't ready yet. I've been reading you all, and can I just thank you all for all the help the posts have given me.
I had a laparoscopy in early December and was diagnosed with deep infiltrating endometriosis, it was also called fibrotic endometriosis (I think, or perhaps that is something else!). Thankfully, the gynae was very switched on and did not touch anything, he simply took pictures and reported it and referred me urgently to the Endometriosis mutlidisciplinary team. Apparently my uterus and ovaries are all stuck to my bowel which is quite contorted through the endometriosis. He couldn't get around it all to see underneath, and reckoned I'd need a hysterectomy. This was welcome news to me. I've had my children (thank the Lord), and I'm less than a decade away from menopause, for me it's a no-brainer to take it all out, ovaries, the lot.
My unmanageable symptoms are basically twofold, back pain radiating down my right leg and bowel pain and disruptions. The back pain has been present for a really long time. The bowel stuff became obvious in 2015 when I was diagnosed with Crohn's disease for a while! Now the GI guys keep saying IBS... I have my own diagnosis though, it's not an irritable bowel, it's a f***ing FURIOUS bowel (FFB)!
My leg pain is getting worse and worse. And now the leg weakness is starting to worry me. I fell over in the street yesterday because my ankle just gave way! I've stumbled before and thought nothing of it, but now it's becoming a problem. Does anyone else have this? The pain in my leg is unbearable today, I'm on max dose tramadol, paracetemol, nefopam, gabapentin, and amitriptilline, and somehow it's not covering my pain!
I'm on the waiting list for hysterectomy, with tubes and ovaries, and removal of accessible endo. They don't think they'll get all the endo, but hopefully they'll get the stuff that is causing my symptoms! There's a 12 week guarantee thing up here (Scotland) that means I will likely have the op in Feb or March (went on the waiting list early Jan). I'm desperately waiting to be given a date. My life has become so tiny due to pain, and needing to be near a loo. It feels like it will begin again once I've recovered from the op. I just can't wait!
I wonder though whether leg weakness will remain after the endo is taken off the nerves. Does anyone have any experience of this?
Once again, thank you for being here. This place is awesome. Getting my diagnosis was such a relief. I wasn't insane. When I tell people this, they look at me in horror. But here people get me. It's hard work having such atrocious symptoms and no evidence that anything is actually wrong. You start to question yourself! So knowing what it was made masses of difference to me.
The docs are not convinced that the bowel stuff is because of endo, but I am, and I'm intent on convincing them that it is worth trying to get as much of it as they can while they are in there, I really don't fancy another op further down the road if it can sorted now. I'm quite convincing, it'll be fine
I've rambled, sorry.