Hugs and prayers to you, Name, and others here with life-altering pain issues.
I live with extensive nerve damage from both a back surgery and from (before that) a female surgery gone wrong where the laser was too high and the nerves conducted the electricity (the numerous docs and surgeons I saw later felt this was the only way I possibly could've had so much damage as some nerves weren't even in that area). This makes it "fun" to find support groups or post online when the worst damage is in places most don't want to talk about, especially in the mid-90's when it happened and the only surgeon working on even one of those nerves was out-of-country! It's also affects my left leg, hip, pelvis, groin, and you explained the sensitivity. When it's real bad, the only thing that seems to help is taking a Medrol dose pack or some type of steroids, or upping my medication which is already high enough. The nerve I mentioned goes down the inner thigh and groin along the adductors and another branch into the hip, so walking can be very painful and hard to do.
I've been praying for so long for medications and advancement with nerve damage with how much suffering it causes so many, and so far the only thing that's been new that made a difference, at least for me, is when Lyrica came out. I had a disc excision (removal of the herniated part of a disc) when I was a late teen then 7 years ago this Spring I had two levels in my back fused as the previous disc managed to herniate again and I had congenital stenosis the level under it. For some reason, this made the Sciatic nerve worse when it had been doing better from the earlier back surgery and now it triggers the obturator nerve (one of the bigger ones damaged during my female surgery plus it's in some of the same muscles as the sciatic nerve which is how it triggers the obturator), and that one tends to trigger the others, so while the surgery helped my back, I had to increase my medication to calm the muscles and the sciatic nerve to keep it from flaring my hip and the other nerves. Over the years like you suggested in the title of this thread, one after another friend with pelvic neuralgia has chosen to stop fighting. It's easy to understand why when living in so much pain and not being able to do much do to it, but it still breaks my heart for them and I hope things change soon. My Dad also suffers from neuralgia, trigeminal and others from his neck. He also hasn't found a way to feel better without being too drugged either. Medications help, but it's a balancing act as they also cause a lot of side affects and tiredness and if I took enough to help more, I wouldn't be able think much! It's hard to know what to do at times, especially when it's at it's worst as it's tough to stop once a bad flare-up is going aside of waiting it out and trying to stay positive and believe it will calm a bit soon.
Hugs gang.
Blogs & Forums
