Health Organization for Pudendal Education

Hello everyone - I’m 24 and new here. I have been struggling with what I believe is pudendal neuralgia. This started after I had surgery done by a gynecologist 5 months ago, specifically a bilateral labia reduction surgery to help with discomfort from labial hypertrophy. My surgeon ended up cutting off most of my labia minora which has been traumatic. It is stretched out and sewn down flat into my skin now. Other gynecologists were shocked by what happened, but there is no reversing it. I told my surgeon I had lost most of my groin feeling, with burning/electric/stabbing pains in my perineum and rectum and she said there was no way I could have any nerve damage from surgery.

I have gone to other gynecologists who do suspect pudendal neuralgia. I have also started getting chronic bacterial/yeast/UTI infections due to the over removal of skin, and that has made the pain worse. I will list off everything I have tried and/or am trying to help manage PN symptoms. I am currently on Gabapentin, Cymbalta, and Nortriptyline and don’t notice a change in pain levels. I had been referred to a pain clinic who prescribed Hydrocodone and Tramadol which did not work and made me very sick. The pain clinic also suggested medical marijuana which didn’t help. I have had a ganglion of impar block and pudendal nerve block, both of which relieved pain for a few hours. I have tried vaginal and rectal Valium suppositories with no relief. I have tried a tens unit and it hurt too much. I do currently go to physical therapy/pelvic floor therapy. My therapist is having me get an MRI of my lumbar spine and pelvis to see if there could be anything else going on. I apparently do not have an “anal wink” reflex anymore because I can’t feel anything touch me. I can’t get in to a neurologist until early next year, but I am able to get the MRIs done at least.

It’s been 5 months of constant pain with no end in sight. The worst pain is in my perineum, which alternates from a buzzing feeling to a quick snapping feeling (almost like poprocks or sparks going off.) It sounds crazy but I can feel the quick snaps moving along a path from my perineum to my rectum. It’s so painful and gets worse throughout the day. As you can imagine, I am also no longer sexually active. I lost most of the feeling in my clitoris as well. This all happened directly after the surgery so I strongly believe that’s why this is happening, especially since the surgery went wrong.

I am struggling to find answers or any relief. I have become suicidal because of this and I’ve had two inpatient stays at mental hospitals all while dealing with infections and PN. If anyone out there has any ideas, please let me know and we can talk about this together more. I really appreciate it

I’m so sorry; I don’t have anything specific to advise on your situation but I too am at the end of my rope with the moving electrical impulses! Do hot baths help at all?

nypain wrote:I’m so sorry; I don’t have anything specific to advise on your situation but I too am at the end of my rope with the moving electrical impulses! Do hot baths help at all?

Hi there, I’m so sorry to hear you’re experiencing the same thing! I haven’t tried a hot bath. The moving electrical impulses drive me crazy. It is almost non-stop. What’s weird is that I didn’t have those electric shock feelings until after I used a TENS machine for a few days. I used the machine on my inner thighs and it felt good, except my perineum and anus had this crackling/poprock feeling instead of comfortable vibrations. It felt like the nerves were misfiring there. And now I’ve been stuck with this moving electrical impulse ever since. It feels like a buzzing around my rectum and then shifts to quick jabs in my perineum. It’s so hard to explain and I’m so afraid every doctor is going to think I’m bonkers! I haven’t used the TENS machine in a month and probably never will again. It didn’t burn me or anything but I wonder if it really irritated the inferior rectal nerves or something? I don’t know how to make it stop!