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.