Anyone out there diagnosed with Pudendal Neuralgia?

I was diagnosed with pudendal neuralgia 2 years ago. Right after my mesh sling surgery. My ob/GYN damaged the nerves on both sides in the alcock canal. I have been through so many test and different Drs to get my diagnosis. Tried Pudendal nerve blocks, had a nerve stimulator, pf PT. Nothing worked. Currently I see a pain management Dr. He gives me Ganglion nerve blocks every month. It does control my pain 80%.

If you have any more questions please ask me

This is a monster and I had it for 14 years. Sat on a donut. The only thing that finally ended it was an anti-seizure medicine for an unrelated matter. It was Topamax. My pelvic doctor told me she had heard of this but never mentioned it to me. Please.....ask your doctor.

I have just been diagnosed with what they think might be pudendal neuralgia.

Among everything I’ve had with my degenerative spine condition. I had pudendal Neurology. It was resolved when we tie it to the nerve roots, exiting the spine, and I could be given an epidural, a steroid epidural in that nerve root location. When our bio mechanics are off various nerves get pinched along our spines if we can trace our neural Neurology symptoms back to particular spine vertebrae and dislocations doctors can offer MFR, injections, ablations, fusions, and other things to alleviate the problem. Make sure you get in for an MRI or an ultrasound and x-rays to make sure there’s no cysts, growths, or impingements that can easily be attended to.

My rectal pain started after a colorectal surgeon did an unneeded surgery. A simply Botox in sphincter to allow a supposed fissure heal. It left me in antagonizing pain. 24/7no way for relief. He wrote lies about me and I could not get a doctor or emergency room to help. I had the tests to show I never took opiates. If I could I would have. My medication doctor does urine test often an all patients. I have seen him for 9 years. It was also written in my med file I am bipolar. I have a letter stating I have never had anything but depression and anxiety from my pain and I am Celiac and have MTHFR. all has ruined my insides. Now the scar tissue he left doing what to my anal canal is growing and my anal canal is only 1/4 inch. The pain gets worse when I have to go potty. It is a hot knife stabbing inside me. My body has gone out of normal brain messages, called functional neurological disorder. No help for that. The network of nerves in the brain is sending the wrong messages. When the pain starts the body goes into shaking inside, arms and legs have lost ability to hold me up without help, my memory is gone and my speech is like a drunk disabled person. Ny life has been hell for 2.5 years. Doctors cannot fix the scar tissue, it causes the pain and that causes my body to go anything but balanced. I look a pathetic old lady, instead of the weight work and Pilates for 35 years. The 2 autoimmune diseases have caused my body to not be nourished. I just found out at 73 years how many problems I have in my body. I don’t see any future. My husband is not happy with my needs. I can move around in pain and off balance. I cannot go do anything but doctors offices who just send me to someone else. I don’t think I can live much longer. The colorectal doctor I saw says there is no surgery, medicines to help. I have been to Specialist PT but it causes pain. Then the doctors pull the therapy. I might try a stimulators implant, but the closure will still be there. One angry surgeon has killed me because with no evidence started to slowly cause my deterioration. He never did any lab tests. I never saw him before I went seeking help for constipation and general pelvic pain.

I found 300mg of Lyrica to be very helpful for pudendal neuralgia

I have had pain in the medial area of the right ischial tuberosity since 2009. It sometimes radiates up into my scrotum, It is worse with sitting, especially on soft surfaces, and is only lessened by standing. Over the years I had minimally invasive surgery to the proximal adductor and hamstring tendons/muscles (tenjet, tenex, prp injections, dry needling). I have tried pelvic floor physical therapy multiple times. I have had diagnostic nerve blocks using fluoroscopic imaging with mixed results, and thus they did not want to pursue that path. I had a SI joint ablation which did not help. I have tried all the various pharmaceutical options and am currently taking 125mg topiramate and 30-60mg baclofen daily with little or no effect. I started ketamine infusion therapy at 2-3 week intervals and have had 8 treatments which offer some relief for anywhere from 4-7 days before symptoms start coming back. The relief seems to be lengthening as the treatments continue but I don't know how long I think we will go down this path. At the beginning of the year I started with a psychatrist that uses hypnosis and teaches self-hypnosis and this has been maybe the most useful tool of all. Yesterday I met with a new doctor that suggested trying pudendal nerve blocks with a rectal approach as opposed to the gluteal blocks I have had before. She suggested the gluteal approach is hit and miss and that is why my previous blocks were inconsistent and they would not continue with them. She also offers neuromodulation, but it is not FDA approved for the pudendal nerve so it would be self pay. She also can refer me to other Drs. in the system to explore PN surgery if compression or restriction is the actual problem. She also told me she can repeat the block every 4-6 weeks as needed and has had success in calming the problem through that approach. A pillow I found personally helpful for this is the Kabooti. I made the hole in the center larger to fit my personal anatomy and it takes the pressure off the inside and places it all on the outside.

Isolating which nerve root causes your predental neuralgia will help you get a steroid injection that should inhibit the pain. Then working with a kinesiology doctor for an exercise plan should help. That’s what relieved me of mine.

What started ur pain? I have SI joint issues. Degenerative disc issues. I am trying a ganglion impar block. Helps pelvic pain and hopefully back pain. I can get relief with valium/ Tylenol/ hydrocodone if I have to have it. Ice/ heat. If u can get no relief for any length of time you could try the implant pain pump in spine. I have a friend who has it and says she feels normal.