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Endometriosis UK
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Leg weakness

Hi girls,

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.

3 Replies

Gosh that does sound awful, but I totally get where you're coming from when you were glad to get the diagnosis. It's horrible feeling like you're going insane as there is no physical proof of the pain you're in, and people can be so quick to judge. I don't know how many times I was made to think it was all just 'stress'. When I woke up from my op and the surgeon said they'd found endo I was like YES!!!!!! There's a REASON why I have felt so sore and crap for the last two years since coming off the pill, and it's not just in my head! As for your leg pain/weakness, have you had an MRI? I really hope your symptoms improve post surgery xxx

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Not rambling Hun. Try get them to deal with the bowel / large intestine endo . For some reason they shy away from the bowel surgery and yes I'm familiar with the fob off ibs or chromed etc. Maybe speak to them beforehand and discuss what they will do with the endo on the bowel. Seems to be very few that will touch it with any confidence. Sometimes it can be shaved off the bowel but sometimes requires part of the bowel removing and rejoining with a temporary bag for a while apparently. I'm worried I have this and I'm Pesuing it privately as well as on NHS. I'm awaiting an mri result yet so see if that throws up. Funnily my pain is still on the right side where bowel large / small intestine is located I can only control it by minimising my hrt . I have had hysterectomy with removal of ovaries and tubes and cervix. This was in the theory that the zolodex was effective so in theory the same . Although they say they didn't find any endo in lap and basically put me in a difficult place because they said we have no justification for the zolodex . It did help a lot the zolodex but not perfect I admit and I'd been in it 2 years. I had a break from it for about 2 months and was in agony so it did help a lot. My NHS gyne has been dismissive , threw the blame back on me, irritable that I'd written down my history cos I was sick of repeating it and so on . Maybe u can revisit the bowel if the op you have doesn't work maybe?? It can and does sometimes come back even with ovary removal Ive heard. Weirdly I fell over too about a week ago on the same side leg where I have the pain and also my right hand is tingling a lot now. I told doc got referred for that scared it is/was a heart issue. My god been so through it. Tramadol etc all the drugs you mention did absolutely nothing for me only hrt in tiny tiny amounts helps me. If you can get your doc maybe to give u something stronger but bear in mind the kickback when you come off tramadol bad enough I never had oxycodone , morphine nothing like that. In fact I was accused instead of lying about my pain to drug seek !!! I have a list of doctors and gynes and any others that have spewed total bullshit cos when I get this sorted I'm going to sue if I can . Anyway good luck if you get chance feel free to let me know how you get on. Hugs xxx


Wow sounds awful. I had a laparoscopy in Feb, and have had little info since. My gynacologist has been very dismissive from the word go (he told me prior to surgery "most people find their symptoms go away after a diagnosis") I went for my outpatients and was only told we removed endometriosis off you go kind of job. My periods are still awful and today I'm going through a day of the muscle weakness. Which is how I came across this post-its awful. I also was diagnosed with ibs but am fairly sure that was the endo but who knows. Tricky when your gynacologist is rather disinterested in his responsibility. Anyway, I hope your surgery helps you in some way if not all. X


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