Health Organization for Pudendal Education

Hello everyone, I'm new to the community. Hope any of you is doing OK!
I have had pudendal neuralgia for 5 years. For 4 of those years, it only manifested as urinary frequency. About 1 year ago, the symptoms multiplied and worsened. I experienced pain in the anal area, pelvic spasms, numbness in the legs, and spontaneous electric shocks near the left side of the anus. These shocks are very infrequent but significant in terms of the level of pain.
I know that it's caused by sitting for long periods of time(in a bad posture), so I assume that the solution and recovery must involve addressing that. However, given the nature of my daily activities, I can't avoid sitting. Has anyone in the community been able to overcome PN when it's caused by this issue?
Currently, my pain only occurs if I put all the weight of my body on my pelvic area. I can feel numbness in the anal area and legs. Therefore, I try to sit by leaning to one side or, if there's a piece of furniture in front of me, resting part of my body weight on it.
Would like to hear if any treatment has worked for you

Hi SrPudendo,

Welcome to the forum! So sorry to hear about your increasing pain. There are a lot of cushions that people find very helpful. I can sit okay most of the time, so I don't have one to recommend. But, I do think the ones that people find useful have the interior cut out like a toilet seat. You could search for cushions on the forum or look at a cushion subject heading in the equipment category. It might take a little trial and error. I've heard people report that one design did nothing but a somewhat different design was great. It sounds like people take these to public places (e.g., restaurants) so I think they can be pretty useful.

You asked if anyone has overcome it. I have not overcome it, but my surgery did significantly reduce the pain. Have you seen a doctor and/or physical therapist? Have you tried to deal with the pain with heat (vinyl heating pad on high) or ice? Both heat and ice have been very useful for me.

April

April, Have you tried a boppy pillow? I am much older than you, and most of us had them - the only thing we could get years ago. I have had two surgeries - one in France and one in Phoenix-Hibner. I used the valium suppositories to function for several years, then moved to Tulsa. A doctor from Emory Med School told me to get a uro-gyn for a new treatment. I moved and I already found a uro-gyn when I did. A branch of OU Med School is in Oklahoma City - and there is a branch here in Tulsa. I met Dr. Price and she kept me in suppositories and a decent frame of mind. She would offer something when something new came along. It did. She called me to come in to see her. The AMA gave its blessings (she called it God) - to a new procedure. She wanted to know if I wanted to let her get the procedure for me. Yes, I was ready. Very. Two PNE surgeries and almost considered the third. Hibner and I both agreed to not doing it. So, yes. She did it in a clinic in front of med students - and it worked. It was supposed to last six months - mine lasted a year (mild discomfort). Anyhow, it is done in a hospital now, lightly sedated, and home. I spotted blood for about ten days and she had meds to calm the urinating. Antibiotics. When the botox is pressed through the upper bladder wall and into the muscles, the pain left. The muscles relax and the pain stops. Now, they did mine last month in the hospital and they hope it will last a year without any breakthrough pain. I padded myself for ten days - spotty blood. I lived my life like any normal person. Uro/Gynecologist at a medical school does this. Med Schools get it before the regular U/G in practice. The med school at OC does the procedure also. I go here - I drive. It certainly helped me - and it was new a year ago. Dr. Price discussed it with me throughly. Med Schools cannot practice anything that is not AMA approved. I was her first patient. What a change. It may help you and it may not. Dr. Price's nurse said it was "Chemodenervation of Trunk". She also told me to make sure to go to a Med School Uro/Gyn for help. PT did not help me at all. Calming the muscles down helped me - no spasms anymore. Consider it. I do know that Hibner and Pr Robert of Nantes, France said not to try anything but PT for the first year. That was that a long time ago. Anyhow, I flew to DAllas at Southwestern Medical School and a doctor tried Botox and it helped. First time I slept for a year. Dr. Gajrag wrote a paper on Botox and published it in the AMA of Pain Medicine - I was "Ms X" in the paper. VAlium suppositories made life bearable for a few years. Heat helped me. Calming the spasms is a big difference. I, now go in yearly for the procedure and live my life. Dr. Price is busy - she has three small kids and works part-time so she can raise her family. She relocated from Oklahoma City Med School to this branch - to cut her workload down. She does not have time to spend extra. She has a full load with PNE and the other female woes. The procedure I have is not what Violet & Jax123 has had - but they think so. This was AMA - and what I lived. I do hope you recup better. In 2000, it was a European trip for surgery - I flew to Mayo in MN - Dr. Antolak diagnosed me - I had surgery in Nantes with 12 other Americans with PNE and came home two weeks later. I then had HIbner do a second surgery on me. You will find a procedure that will help you recover easier. Drugs, no. What will help will not help another. One of the Nantes PNE patients was a nurse and her husband was a surgeon - she had it for ten years before finding someone capable to diagnose her - she had it on both sides. She did recover - with drugs and went on to her PHd - and she was working for medicine for the poor. She passed a year ago. She did not give up -- . Men have a harder time I think. She was the kindest person I have ever met. Beautiful. Consider everything - it is your life. Carlie

CarlieK wrote: ↑Tue Jul 18, 2023 3:52 am When the botox is pressed through the upper bladder wall and into the muscles, the pain left. The muscles relax and the pain stops. Now, they did mine last month in the hospital and they hope it will last a year without any breakthrough pain. I padded myself for ten days - spotty blood. I lived my life like any normal person. Uro/Gynecologist at a medical school does this. Med Schools get it before the regular U/G in practice. The med school at OC does the procedure also. I go here - I drive. It certainly helped me - and it was new a year ago. Dr. Price discussed it with me throughly. Med Schools cannot practice anything that is not AMA approved. I was her first patient. What a change. It may help you and it may not. Dr. Price's nurse said it was "Chemodenervation of Trunk". She also told me to make sure to go to a Med School Uro/Gyn for help. PT did not help me at all. Calming the muscles down helped me - no spasms anymore. Consider it. I do know that Hibner and Pr Robert of Nantes, France said not to try anything but PT for the first year. That was that a long time ago. Anyhow, I flew to DAllas at Southwestern Medical School and a doctor tried Botox and it helped. First time I slept for a year. Dr. Gajrag wrote a paper on Botox and published it in the AMA of Pain Medicine - I was "Ms X" in the paper. VAlium suppositories made life bearable for a few years.

CarlieK wrote: ↑Tue Jul 18, 2023 3:52 am The procedure I have is not what Violet & Jax123 has had - but they think so.

Hi Carlie,

Thanks for posting this. I am glad your pain has significantly improved. Forgive me but I am not entirely sure what the procedure is that you had done. In one place you described it as Botox. In another place you said it was chemodenervation of the trunk. Another time you told me that Dr. Price wrote down that the procedure was "Female Pelvic Medicine Resconstruction Surgery - Urogynecology."

I have not had any of these procedures so, no, I do not think that I've had the procedure you had. Botox can cause chemodenervation but I have not heard of it being used on the main trunk of the pudendal nerve.
https://www.bcbsnd.com/providers/polici ... inum-toxin

In the above description you say that the Botox was injected into the bladder muscles. I'm not sure how that would accomplish denervation of the main trunk of the PN. I wonder if there is any literature that describes what the procedure is so the confusion can be cleared up. I called Dr. Price's office and requested information on the procedure they are doing but unfortunately, I never received a response.

Violet

Hi Carlie,

Thanks for the suggestions. Like Violet, I'm curious about the procedure too. But, I actually manage pretty well. I'm highly functional and am able to manage the pain without it disrupting my life that much, so I would be very reluctant to try anything invasive at this point. But, I think many others will be interested in learning more about this procedure.

April

I did a little more research about chemodenervation but I couldn't find anything about using for the pudendal nerve. So, I am very curious about the nurse saying what you had was chemodenervation of the trunk, Carlie.

This article is about chemodenervation of the bladder muscles using Botox. https://pubmed.ncbi.nlm.nih.gov/33394765/
Could that be what you had done, Carlie?

I've never had Botox and we haven't really discussed chemodenervation on this forum much so I would be interested to hear more about it. Not for myself, since I am doing great now, but maybe it will help someone who comes here looking for answers. If anyone knows more about this, please post about it.

Violet

Hi SrPudendo,

Sorry to hear about your situation. I've also been suffering from prolonged sitting-induced pudendal neuralgia for the past three years, with similar symptoms. I use both tailbone and donut pillows like the ones another poster suggested. To be honest I still can't tell whether they actually help, or if so which one helps more. I can say for sure that whatever difference they make for me is pretty marginal. What does help to take the edge off the pain for me are piriformis stretches, either on my back or in the pigeon pose. The effects are temporary of course, but I get some immediate relief at least 50% of the time. I also find that going for a walk at least once a day helps to keep the pain tolerable, even with prolonged sitting the rest of the day. Something about the hip movements during walking or running seems to counteract the pressure on the nerve, at least in my experience. Hope this helps!

Shehzad