Endometriosis UK

Back pain/sciatic nerve issues

Hi all. This is my first post here. I was diagnosed with endo stage 4, 13 years ago. I have always been in pain and it has curtailed my life in so many ways. I am lucky to have only had 4 operations, for a bowel resection, pelvic excision (all my organs needed separating), endometrial cysts and a diagnostic lap initially.

I eventually gave in to the need to have an oopherectomy a year ago as the pain in my stomach and back was so bad that I had to be signed off. Turned out the endo had returned & my ovaries were embedded into my pelvic wall and they had to be dug out and removed. Am on HRT and do get cyclical pain as a result. Anyway, that helped with a lot of the stomach pain but the back pain & loss of balance (started 2 years ago and getting worse) remained. In the last few months I have also fallen due to loss of feeling in my left leg, got pains and needles etc as well as shooting pain every day down my left leg. I am on nortriptyline for pain, which is better than the amitriptyline I was on, but the numbness is affecting me badly. I had an MRI that showed no back problems but was referred to the spine clinic. She said that she thinks it is all down to adhesions and scarring inside and it may be pressing on my nerves. I have been offered physiotherapy for muscle weakness as my leg has started to drag, but she said the chronic back & sciatic nerve pain is here for life. I asked her whether the endo could be near on on my sciatic nerve and she didn't know as she'd never heard of that. Does anyone else have any experience of this as I am getting very depressed about the thought of impaired mobility and loss of feeling in one leg for the rest of my life? I was wondering about being referred to an Endometriosis centre but not sure if that would help, given that my MRI has not shown anything untoward. Thanks for reading.

2 Replies

Hi, i too have stage 4 Endo and suffer dreadfully with the back, hip, leg and sciatic pain. I hobble around like an old woman but dont have numbness like you. Endo on the uterosacral ligament runs very near the sciatic nerve. I had nodules excised from both left and right ligaments in Nov. I still have the pain but there are definate improvements. I too have been given the all clear from an MRI. I have recently started Gabepentin and am steadily increasing the dose. I would definately recommend treatment under an Endo centre. It can be really isolating and depressing. I am particularly feeling it today - a sunny day when the family have gone out...Feel free to PM me x


Hmmm is leg pain sereve back pains, cramps and IBS could that actually be endo as my lower back does worsen due my periods 😑 I do get back pains anyway but never knew what the cause was the Dr's state it was IBS I have that under control via diet but the ongoing back pains I duno what it is 😖

Any ideas??


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