Pelvic / hip nerve pain - how to get diagnosis?

[GWP81]

I've had endo for 20+ years, 15 operations and lots of scar tissue. I'm really struggling with hip joint pain / pain down right thigh (over last 18 months) which I think is linked to nerve damage or lesions/scar tissue pressing on nerves but I haven't had this latest bit diagnosed. Having a massive flare up where I can't lift my right leg or turn my hip without huge pain.

I am being pushed between gynae and muscalar / skeletal consultants and wondered how anyone else had had this diagnosed as I feel at a loss of who to go because it's outside traditional gynae area and how to get help beyond the pelvic physio that I already have.

Has anyone else experienced this kind of neuropathy + endo pain and how did you get help / what kind of consultants did you see?

[WanderingFox]

I have had unexplained hip / buttock pain on the left side for three years. A laparoscopy was clear as was a MRI, another MRI showed hip impingement but orthopaedics has said there’s no tearing or swelling so they don’t think it’s the cause.

I have other symptoms too so I’ve been between gynae, urology and orthopaedics. No diagnosis yet and I’ve had to go private with gynae and have to do it again as the waiting list is so long.

[GWP81 in reply to WanderingFox]

I'm so sorry to hear that - I'm also trying to get an MRI of my hip to rule out anything else but it's driving me nuts there's so many specialists but no one talks to each other. I've also had to go private as no help from NHS

[Morty1984]

me too. It sucks. I’ve been diagnosed with an overactive pelvic floor as well as stage 3/4 Endo which both create a lot of pelvic and hips pain. The exercises to relax a pelvic floor seems to be helping my hip pain so maybe worth you exploring? I’m also going to see a pelvic floor physio too x

[GWP81 in reply to Morty1984]

Hiya, def go and see a pelvic physio that's who I'm seeing - I also have the overactive pelvic floor but ultimately she just manages the symptoms - I want to see if I have endo in my hip but not sure how to get that diagnosis. I'm sorry you've got it as well, it's the worst.

[Morty1984]

I feel exactly the same. I feel like I’ve been told it’s all overactive pelvic floor but I’m convinced I have Endo growing on the ligaments. I really hope we both get a resolution. It’s a constant fight isn’t it.

[GWP81]

It really is. I'm so sorry, I know exactly what you're dealing with. If you come across anyone good to help, let me know and I can do the same?

[Tttt4444]

I had surgery three years ago…..undiagnosed endo for twenty years….had hysterectomy for adenomyosis but left the ovaries….diagnosed with stage four endo….before surgery I had occasional hip pain flare ups lasting weeks after surgery my hip pain became constant ….I was not able to sleep I would turn from side to side not able to lay on either side the pain was excruciating and would constantly wake me felt like I was laying on cement….walking was excruciating and the more I walked or stood even the worse the pain…..this pain just randomly stopped about two months ago….I don’t understand it but have hope it could just stop hurting ❤️….I have also read of other patients who had the same pain and was caused by endo affecting the utero sacral ligament…and I have endo affecting my utero sacral ligament….my gyno claimed the hip pain was not caused by endo

[BloomingMarvellous]

Try messaging Lindle on here and ask if she has a recommendation for you regarding nerve and ligament endo. You may also want to discuss pelvic physio with your BSGE centre. You will want to be pushing to get an MRI done to see if there is viewable evidence of DIE.