You may want to read my posts to get my full story but in short I have endo on a plexus of nerves to my R leg, foot and buttock. My diagnosis is ‘lumbar sacral plexopathy presumed secondary to Endometriosis’. I suffered motor nerve damage in September 2015 which was confirmed with nerve conduction tests and EMGs. The neurologist suspected endometriosis as the cause due to my symptoms and pattern of onset and since there was no other causes found by MRI scans. Seeing the right Gynaecologist took until February 2017. I didn’t respond well to contraceptive pills to stop my cycle and so my only choice was GnRH analogue injections. This hugely helped and despite a laparoscopy to remove what they could, the problem endo is inaccessible surgically so I’m on the injections long term with add back HRT and have been for over two years. I’m 44 so conceiving is not an issue but maybe for you?
What tests have you had done so far? Are you under a specialist centre for endo? You should be.
Happy to discuss anything with you. This is a rare thing.
Since 5th March I have been struggling to walk and also have constant lower back pain when I move, this starts on the right side and moves over to the left and into left hip and leg. My right hip is also painful when I move. This was a new symptom for me during a terrible endometriosis flare up. My GP sent me to the emergency gyne, they did nothing for the pain and prescribed me a drug that I found out the following day was discontinued! However they did order an MRI scan. The following day I was in A and E due to the pain, I'd managed to hold it together until my mum took my 2 kids to school. I was in hospital for 4 days and they gyne team decided to start me on 3 month course of Zoladex and hrt. I was also on paracetamol, narproxine, codine, tramadol and oramorph. They discharge me and I had my MRI the following weekend. Waiting for 2nd May appt to discuss findings however they moved it to 27th June. I've been signed off work since 7th March on all of this pain relief however they would not discharge me with oramorph. The pain in my back and legs has never gone and due to the nhs moving my appointments I decided to go private. Best decision I made, I chose a specialist that I knew of and was seen in 2 days. He looked at past ops and my MRI and explained that the lesions could be putting pressure on nerves causing sciatica. I'm having a full hysterectomy in 2 weeks time but leaving an ovary behind. Hopeing this sorts me out. Hope its helped you.
I was diagnosed with the same. Mine is caused by nerve compression because my ovary is implanted into the abdominal wall with lots of adhesions. I am having surgery in about a week to try and free that ovary or remove it, which should help with a lot of the pain. I may still have pain though depending on if there was been nerve damage from the compression. Hoping it fixes it!!
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