Nancyl Posted August 21, 2018 Report Share Posted August 21, 2018 Has anybody else experienced this? When I became sick with Dysautonomia it immediately caused Autonomic problems. It seemed like everything in my body was impaired in one way or another (gastric, leg muscles, bladder, bowels, blood pressure, breathing, eyes, energy, etc). However a nerve that I never knew existed became a painful reality from the start. I've had to endure many test, specialist, procedures and nerve blocks only for the doctors to tell me (they believe) this very painful nerve that has completely taken over my life is being dominated by the Dysautonomia. So in other words i guess that means I have to live with it?! Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 21, 2018 Report Share Posted August 21, 2018 Well - I am not sure. The pudendal nerve really is not part of the autonomic nervous system. So - although you are suffering from this condition I am not sure that it is related to dysautonomia. You may be dealing with two separate issues. --- Wishing you only the best! Quote Link to comment Share on other sites More sharing options...
htberg Posted August 23, 2018 Report Share Posted August 23, 2018 Part of my dysautonomia includes urinary retention and having to self-cath. They tested my pudendal nerve too. Although I have near constant UTIs (12 per year), the pudendal nerve for me only acts up on occasion. It is very painful when it does. I'm sorry you are going through this--can't imagine that pain long term or daily. I did some pelvic/urinary/bowel physical therapy for awhile. It did not work for me b/c the issues were determined to be related to dysautonomia (and neurological) versus other reasons but it might be worth looking in to. I know we can get desperate for any chance at a more normal and functional life and try almost anything for some relief. Quote Link to comment Share on other sites More sharing options...
MartP Posted December 5, 2020 Report Share Posted December 5, 2020 I have dealt with pelvic pain for 13 years. No one could tell me what was wrong. Not signs of IC. It calmed down after a few years but then I had no signals as my bladder filled to tell me it was time to go to the bathroom, so my nerves are damaged and there are no signals sent to my brain when my bladder is full. In 2019, I developed vaginal pain related to the pudendal nerve. My PT has worked on me for over a year and now thinks it is an autonomic nervous system disorder. So I am now looking into this. Quote Link to comment Share on other sites More sharing options...
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