Endometriosis in Nerves - specialist

[TealBananaPeel]

Hi does anyone know of a specialist neurologist in the uk who does microsurgery on endometriosis of the nerves?

I know there is Camran Nezhat in the USA and there are only a few specialists but I don’t know if there are any in the UK.

I’m in acute pain and losing the strength in my legs and back and I’m losing some function in my bowel and bladder. I have to use crutches even in the house and have to support most of my body weight like that. I can’t sit upright on a chair at all, can’t walk on my heels or tiptoes even one step. I have pain in my legs, hips and groin and laying in bed and moving even a cm is agony.

it’s the progressive loss of function that is scaring me as well as the intense pain. My legs don’t work properly.

It’s all the symptoms of compression of the main spinal nerve which is a medical emergency but I’ve gone to a spinal surgeon who did an MRI and the spinal nerve is ok (thank goodness) but he said the symptoms and the specific pain are exactly that of this serious compression thing and that the only other patients he’s seen present like this are endometriosis patients. I tried to ask can endo be there but he couldn’t tell me any more and told me to do normal physio and talk to my gynae.

I felt like a fraud but I still can’t get my legs to work properly, they’re draggy and weak and I have to use crutches and make sure if I have to stand (which has to be with crutches) that I go just on one leg with the other stretches and most of the weight on my arms.

the pain is making me feel sick all the time.

I found Camran Nezhat website and it has info on neuropathic endometriosis and how it can grow on many different nerves including the sciatic nerve which causes the exact symptoms I’m having, pain and loss of limb function and that it can be operated on with relatively good outcomes afterwards but that it has to be specialised microsurgery with a specialist endometriosis neuromicrosurgeon and there are only a few in the world.

does anyone know if there is a specialist like this in the uk?

I know it’s probably a long shot but I don’t know who else to ask

[Moon_maiden]

Hi

Sorry you’re going through this. I’ve been told I have nerve damage from Endo, I’ve tried Amitriptyline, Pregabalin and Duloxitine. The Duloxitine is the best of the three. I can’t sit upright, haven’t since 2019 or stand for long. Yours sounds more severe for walking. I have recently seen a physio who does understand and so far an exercise to firm the hips, specifically working the psoas muscle. My pelvis is very unstable and I do wobble at times.

Metoclopramide is great as anti sickness tabs.

You might find that London teaching hospitals like Kings might be more up on the neurological side of Endo, it’ll take a thoughtful surgeon to want to. I’ve asked two pain specialists for the pain injections into the abdomen but they won’t do it, too many nerves. I asked a neurologist if they did, but won’t either. There is an interesting article on someone that did in the pelvis, if you do a search for Endo nerve pain practical pain management. The pain society also have back issues of their magazine on their website which can be interesting.

Please let me know, pm, if you can’t find the links.