Anyone out there diagnosed with Pudendal Neuralgia?

Posted by LeighO57 @leigho55, Jun 5, 2018

I have not been on connect for quite a while since I have only recently received a diagnosis (one of many probably to come) I am looking for someone/anyone who has the pain from a surgical injury of sorts to this nerve to talk to. Is there anyone out there with Pudendal Neuralgia on connect? Thank you!

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catrine0119 | @catrine0119 | Sep 9, 2023

I just read up on the Elsberg syndrome. Wow! Never heard about that, but it should be looked at. After the sclerosis diagnosis that required clobetasol, I started breaking out with Herpes Simplex 1 on my glutes. That’s when the doctor put me on a small daily dose of an antiviral. She said this virus attacks where you are weakest.
Negative for Herpes Simplex 2.
The Gabapentin is hard on my weight. Put on 20 lbs. in no time. I have to really watch what I eat as I believe the extra weight is hard on my pelvic floor. It is also affecting my short term memory.
The only time I’m without pain is when I am sleeping.
Keeping my fingers crossed that the DRG implant will work.
I wonder if anyone has noticed that their pain really flares around the full moon.

hennykatz | @hennykatz | Sep 9, 2023

In reply to @catrine0119 "I’m so sorry for your agonizing pain as well. My unit is from Abbott Labs, and..." + (show)

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

catrine0119 | @catrine0119 | Sep 9, 2023

In reply to @hennykatz "Thanks for the info. I will call Abbot Labs Monday. I hope you will continue to..." + (show)

Thank you! I wish you the very best of luck. I will update and post my progress.

harley22 | @harley22 | Sep 10, 2023

In reply to @catrine0119 "My pain started after contracting a bad virus in 2018. Whereas most everyone at work got..." + (show)

@catrine0119

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.

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I feel for you,as I know what it feels like to be in pain everyday.
There are days when I just want to hang it up,like you,but I keep on trucking as they say.
Hope you get some better relief soon!

romans8 | @romans8 | Sep 11, 2023

In reply to @nickyfriskel "To be honest I was having pain for quite a few years, misdiagnosed by my regular..." + (show)

@nickyfriskel

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.

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Dear Nicky,
I realize this is an older post so I don’t know if you will get this, but I just found your post and am so encouraged by it. I am wondering how all your treatment with Dr Hibner turned out? I live in Phoenix and know of him, but I have heard he is very expensive and doesn’t accept any insurance. I have been suffering from severe pudendal neuralgia for several years, and have tried multiple treatments to no avail. My last attempt was a pudendal nerve block at Mayo in June. Could you give me an estimate of what it cost you to see Dr Hibner? And also which pelvic PT he referred you to? I am about to give up ever finding help with this debilitating pain
I sure hope you have gotten relief,
Regards,
Mary Lynn

bunnybear | @bunnybear | Sep 12, 2023

In reply to @pita444help "That would unfortunately be me. I've had this problem for over 25 years. My pain is..." + (show)

@pita444help My pain is in the very same area as yours and I feel it to be emanating from my episiotomy on the left side. Lyrica and Cymbalta help but I recently had a spinal cord stimulator which helped a lot with other pain. But I still get PN pain from sitting for a long time. Since it is hard to stand for most of the day I haven’t found relief. But I am working with the Nevro techs to address sitting pain specifically and will let you know if the SCS helps to significantly reduce it.

francesmharris123 | @francesmharris123 | Feb 21 3:47pm

In reply to @jwm61 "Has anyone had the pudendal nerve burned to help the pain? I am scheduled to have..." + (show)

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

francesmharris123 | @francesmharris123 | Feb 21 3:50pm

In reply to @romans8 "I have the same question. I have been diagnosed with pudendal neuralgia and am scheduled for..." + (show)

I had the Pudendal Nerve Block and had no pain for 8 hours. If you find that your nerve block lasts longer let me know.

hennykatz | @hennykatz | Feb 22 7:08am

I had the block and pain only got worse. Really struggling with life.

jwm61 | @jwm61 | Feb 22 11:38am

In reply to @francesmharris123 "First I had a Pudendal Nerve block and no pain for 8 hours. Dr Prologo did..." + (show)

Thanks so much for your reply. I am still evaluating whether I have a pudendal nerve problem. I am in the process of evaluating the Cauda Equina Syndrome condition. I had no luck withe the pudendal nerve burn. I hope the pain you have gets better.