Health Organization for Pudendal Education

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Never got any better

Hi Pain_Darren,

Many people do not experience a long time, maybe a year or more. I had some immediate improvement, but I still had flares of pain. But those flares gradually became less frequent. I think the reduction in frequency continued for about 3 years. Have you had any improvement at all? What does your surgeon recommend you do next since they have concluded that your problem is related to a small fiber artery?

April

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Hi Darren,

I'm sorry to hear you are still having problems.

For me it took about 9 months to get off narcotics and about 18 months before I could sit much. I did some additional things after surgery to correct some of the underlying problems -- like prolotherapy to strengthen the SI joint ligaments, hyperbaric oxygen to promote nerve healing, alternating hot/cold sitz baths to promote healing, and TENS unit to calm down the muscles that were in spasm. I continued seeing improvements for several years. I remember one of our former directors who took about 3 years to fully recover. But, like Jaxi said, unfortunately there are some people who do not improve after surgery. Based on moderating the PN forum for many years, I think what April said makes sense. But of course, that is anecdotal.

Violet

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Darren, I think we were responding to your original question -- "how long after being operated on does everybody find good improvement." Please don't get upset with us just because we are honestly answering your question on how long it took us to recover. We aren't dictating the time to recovery. We were simply answering your question honestly from our own experience.

Now you seem to have changed your question to how long it will take to recover if you have small nerve fiber (autonomic) involvement. Here is an interesting article on the topic. https://www.verywellhealth.com/small-fi ... hy-7556444
I went back and looked at your previous posts. The only post I see that describes much about your symptoms is that you say you had itching related to weightlifting. I had a lot of itching, especially during my recovery from surgery. My initial injury was due to weightlifting. The itching went away less than a year after pudendal nerve decompression surgery. Obviously, my experience was different than yours.

I don't know if I had small fiber (autonomic) neuropathy. I did not have nerve biopsies that proved it was small fiber neuropathy. Have you had nerve biopsies that prove it? So, what are your symptoms?

Violet

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Hi Darren,

Sorry to hear you are in a bad flare. I know that Dr. Bautrant used to do dopplar studies to see if the nerve was compressed since the pudendal nerve and the pudendal blood vessels run alongside each other. So it makes sense if the nerve is released that the blood flow increases.

After my PNE surgery I did hyperbaric oxygen and alternating hot/cold sitz baths to increase circulation and oxygen to the area. Maybe those would help you? My insurance paid for half the cost of hyperbaric oxygen. But Dr. Antolak advised that it would only potentially help after the nerve is decompressed.

Don't worry, I "stalk" everyone's posts and try to answer as many people as possible. I just want everyone to get well.

Violet