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Nerve pain related to endometriosis

Recently had a laproscopy after two years of suffering and the surgeon said there was no signs of endo. I have a coil implant (Mirena) to supposedly help with the gynaecological pain and I also take the pill. These hormones have helped somewhat, however I am still experiencing horrendous nerve pain from my lower abdomen and down into my legs.
Has anyone else experienced this or have any advice?

  1. I'm sorry to hear that you're still experiencing so much pain and that your surgery didn't reveal any endometriosis. The two things I'd suggest are a second opinion and pelvic floor therapy. I hope someone else here will chime in with other suggestions. Sending you gentle hugs! ~Katrina, Endometriosis.net Advocate

    1. Thank you so much!

      1. You're welcome. Keep us posted on how things go! ~Katrina, Endometriosis.net Advocate

    2. Hi there! I'm sorry you're going through this. I can relate. I get nerve pain in my pelvis, particularly on the right side, that goes down my legs into my toes. Sometimes my lower back, butt, and hips hurt, tingle, or go numb. Doctors don't think these sensations are due to direct endo lesions on the nerve. With that said, I have a lot of scar tissue. And there's plenty of research that endo is a systemic inflammatory condition that can cause scar tissue unrelated to endo lesions. It can also lead to neuroinflammation -- nerve inflammation -- in places where there isn't endo. On top of that, having endo can also change how the brain processes pain in general. For me, nerve pain has been a difficult symptom to treat. However, I've found some relief with physical therapy to ease pressure on certain nerves in my hip and pelvis along with short-term antidepressants for nerve pain. Gabapentin is a drug specifically for nerve pain that my doctor suggested, but I haven't tried it. My next step is to talk with a neurologist if things get worse. But I'll be honest, I'm exhausted from all the doctor visits. I'm sticking with my pelvic floor/physical therapy exercises for now. Please let us know if you find anything that helps you feel better! - Keri (endometriosis.net team member)

      1. Hi Keri, thank you so much I really appreciate your response this is really useful. I have a physio who I see weekly due to musculoskeletal condition I suffer with so when I am in clinic next week I am going to discuss pelvic floor physio therapy as this has now been mentioned by many. I have tried gabapentin but didn't have much luck, it made me feel like a zombie, however that might of just been my experience with it!

        1. I've heard similar stories abut gabapentin, which is why I haven't tried it. So I don't think you're alone there. One more thing, one of my doctors suggested my leg pain was due to central sensitization. While I do think I have a chronically heightened nervous system, and antidepressants have helped with some general nerve issues (my fingers feeling like they're burning, for example), I firmly believe that my pelvic/leg nerve issues are due to a specific thing, which includes a trigger point of scar tissue in my pelvic AND structural pelvic and hip issues. I haven't been able to completely get rid of my leg pain, but the physical therapy does help. I'm currently seeing a female sports medicine physical therapist for something called periformis syndrome, and she's showed me even more ways to relieve some of the tension on my nerve in that area. Definitely don't give up hope! And please keep me updated on how things go! - Keri (endometriosis.net team member)

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