Anyone out there diagnosed with Pudendal Neuralgia?

I’m so sorry for your agonizing pain as well. My unit is from Abbott Labs, and I received the surgery from the Kansas University Spine Center. It was my doctor’s idea; I had no knowledge about it. It’s rather new. It’s not an easy subject to broach with others. I have two leads - one is for S2 and the other is for S3; both left, and I have an implant in my left flank (the size of a double stuffed Oreo). Every couple or few days, I am to increase each area by one. I feel the area and pain changing. Even if I get this pain down to 40%, that would be wonderful. I hope you find your answer!

Thanks for the info. I will call Abbot Labs Monday.
I hope you will continue to improve.

My pain started after contracting a bad virus in 2018. Whereas most everyone at work got a horrid respiratory infection, I slept for 3 days and was very weak. My body was attacked. 5 days later, this pain started in the rectum. Being a type A personality, I went to work with sitting pain. I was an accountant with a team of professionals, and my commute was about an hour each way. I used over the counter meds, ice and heat to get through for 8 months. The stress of working with this pain brought on shingles that erupted off the left side of my tailbone. Dr. put me on gabapentin and Hydrocodone/Acetaminophen which helped, but did not take all the pain away. Went back to work after a month (using up vacation time), and the whole deal of going back to sitting was stressful, painful and depressing. I stopped the painkiller and gabapentin as I had to drive, plus my job was cerebral - budget, year-end, audit and taxes. I had horrible stabbing, burning and spasms in the rectum. I went out on disability (it was so bad, I couldn’t do another day), and went to a pelvic therapist. She could break a muscle spasm, and dry- needle outside trigger points, but the pain would always come back. More shingles occurred; this time down toward the left labia. Then saw a new gynecologist, and she took 3 biopsies from the pelvic floor area. No cancer. Then I developed a strange skin disorder in the pelvic region which required clobetasol. My doctor put me back on painkillers, gabapentin plus duloxetine as I had post herpetic neuralgia. My immune system was shot. So now my whole left pelvic floor was in pain, even when laying down. I went through a series of cat scans, MRIs and therapy, but to no avail. I also had 4 image guided shots on my spine; no relief. I had always been a healthy, happy and hardworking person, but when the flares hit, I would pray that God take me. I’m not suicidal, and I would not wish this pain on anyone, but there were times when I thought if only the health providers could feel this for one day, there would be more understanding; maybe more research.
4 weeks ago, I had a dorsal root ganglion implant procedure. I had a successful trial, meaning my pain levels improved considerably. Right now, I’m going through that period of working with a representative to help me get the correct setting to alleviate the pain. It takes time and patience. I’m not there yet, but I have hope. Thank you.

To be honest I was having pain for quite a few years, misdiagnosed by my regular gynecologist, referred to a specialized gynecologyst who did a biopsy of my genital area and I have an autoimmune disease called lichen planus... He thought that was the answer but the treatment didn't stop the pain. He prescribed Neurontin which worked wonderfully for the first month so he diagnosed me with neuralgia. He didn't say what kind of neuralgia and then the pain started to come back... I'm still on 1200mg three times a day. Narcotics do work but he wouldn't give me more than 20 Norco because the of medical board... He was worried about his license. He told me to find a pain doctor... Every pain specialist refused me because they didn't deal with "that kind of pain" I set about researching my symptoms and came up with Pudendal Neuralgia myself and also discovered Dr Hibner in the process!!! It took me three months of fighting for past medical records and referrals from my insurance company before I finally got an appointment. The tears I have cried over the last five years are unbelievable... So I have a double whammy.... I have to see the other guy every three months because Apparently the autoimmune can develop scar tissue and close up my vagina!!!!!! 😳😳😳
So last week I saw Dr Hibner... He did an MRI which indicated no nerve entrapment which is good but he did say that because of the pelvic surgeries I'd had in the past the nerve was irritated and was causing the neuralgia. I'm all set for a CT guided spinal nerve block in a few weeks and then the following week he's going to inject botox into my pelvic floor and also do nerve blocks either side of the pudendal nerve from the inside of my pelvis. He's also given me strict instructions to see a specialty physical therapist.
He was thorough and also so kind and he really is passionate about his work. Patients come from all over the US to see him and also from other countries too. You can web search him and find interviews and info on his views
Good luck with your treatment and research into new doctors. I'm sorry you're having this pain too.. It's miserable and debilitating. Have you tried lidocaine ointment 10%? It's a prescription but it helps immensely with the genital pain... Coccyx pain and sit bone pain obviously not but some relief is better than none.

That would unfortunately be me.
I've had this problem for over 25 years. My pain is in the left tailbone and anus area. (How lovely).
Only relief has been Clozepam .5mg x2 per day along with Effexor which is an anti depressant. Her to help or talk. I'm back in this dreaded horse because of the opiod crisis and the doctor wanted me to get off Clozepam which I have been fir two weeks. I'm now just like it was day 1 with pain. I'm going back to Doctor to get back on them.

Has anyone had the pudendal nerve burned to help the pain? I am scheduled to have this done, just wondered has anyone out there had this procedure for the pudendal nerve? (ablation of the pudendal nerve).

I have the same question. I have been diagnosed with pudendal neuralgia and am scheduled for a pudendal nerve block at Mayo in a few weeks. Has anyone else had that treatment? It’s a last resort for me. I’ve had 2 years of pelvic pt, trigger point injections, and been on Gabapentin for 3 years for small fiber neuropathy.

First I had a Pudendal Nerve block and no pain for 8 hours. Dr Prologo did a Cyroablation but it did not work. I have had the pain from pudendal nerve for 5 years. I have a Trial Pudendal Nerve Stimulator for 60 days which is almost
Over. Sometimes the pain is much better when it is on.
I do take the battery off each day to exercise and the pain is like it was before