pudendal nerve ablation

[Olmscheid80]

Some where I read that ablation works for PN, What Dr. would I search for . I started here when I was in my early 70s, Now I am 85 and each day is a struggle.. I am so tired..... I accepted this disease a long time ago knowing I would have it until I leave this earth.. Some how, I just keep hoping I started painting abstracts 15 years ago, when I could no longer be comfortable sitting... I am finding it more difficult as my back issues are compromising my ability to continue... I want to keep painting. I just can not find a day that I feel comfortable enough..... Is ablation of the nerves somethng new? Violet, so good to see that you are still here for everyone. Ellie

[April]

Hi Ellie,

So sorry about your continued pain. Ablation isn't that new. I considered it (and decided against it) in 2017, and at that point, it had been around for at least a couple of years. I haven't heard about that many successes with it. There was someone on here who had it who was posting---I think in 2017---who did have success. But, I've seen posts (or heard through fb) from a few people who did not have success and, even more worrisome, felt it may have made them worse. And I don't think there are publications documenting it as successful---but I haven't been following this lately so I could be wrong here.

April

[Violet M]

Hi Ellie,

I am sad to hear you are still struggling with PN. My understanding is the same as April's - that ablation has mixed reviews, unfortunately. If you were going to consider it, you would most likely need to try a nerve block at the potential site of ablation to see if that is the right place to target. But even if the nerve block helped temporarily there is still some risk involved with the ablation.

Violet

[Olmscheid80]

Surprise surprise, I had an appointment with a cnp at the neuroscience facility in St. Cloud, Mn. Getting straight to the point she told me I do not have PN. She said I do have sacrococcygeal disorder. She asked about the injections I have had over the past 14 years, I said, don't talk to me about injections, none of them were even a bit successful... She said that is because they were not giving them to you in the correct area.... I am ANGRY and HOPEUL. I will have a pelvic done by a person that has been doing internal pelvic exams for 23 years. she said she will tell you exactly what you have. She is going to go back to all of my records from the past. How may I ask could Dr. Antalek and the physiatrist have gotten it so wrong. I called my daughter on the way home from my appointment, she said, Mom, I never did think you had it, but you didn't want to listen to me. She said I have been reading so much material these past years... AND, the CNP also said the reason I walk the way I do is because I have atrophied muscles in my pelvis from my surgeries... I told her at one point that my piriformus was entrapping my PN. she looked at me and said, NO IT ISNT. 16 years of hell with the wrong diagnoses.

[April]

Oh, Ellie. I'm sorry about the incorrect diagnosis. How incredibly frustrating. They should have been able to figure it out. I'm glad you have a new doctor who seems to understand what is going on. Keep us posted.

Take care,
April

[jaxi123]

What is your next plan of action?

[Violet M]

Hi Ellie,

Just checking in to see how treatment is going for you. I wasn't able to find much online about sacrococcygeal disorders but it sounds like the diagnosis is made by injection into the sacrococcygeal joint.

https://pubmed.ncbi.nlm.nih.gov/2678043/

Did you have an injection to confirm the diagnosis yet?

Violet