Health Organization for Pudendal Education

Please post an update! I'm having this in Bellevue, WA on Nov 14. I tried to get an appt with Dr. Richard, as he's local to me, but I couldn't.

For folks who are considering PRF, here is my experience with it:

I had the PRF with Dr. Richard in Baltimore on November 5th. Previously I had tried PT, medication, two botox injections, and a variety of nerve blocks (GF, superior hypogastric, ganglion impair) with no success. I had about two weeks of good relief with a pudendal nerve block done at the entrance to Alcock's Canal, so PRF seemed like the right next step. The PRF was done on the left pudendal nerve at the ischial spine since my pain is all on the left. The procedure itself was painless. I was under mild sedation and didn't really feel anything.

For the first week I felt just a bit of increased sensitivity in my perineum and scrotum. Then, between days 7-10 I had a significant increase in pain - a burning pain in my perineum that was constant and not necessarily caused by the normal triggers like sex, walking, and sitting. It was very scary and I had trouble sleeping. It was the worst pain I've experienced in the three years of dealing with this.

In the middle of week two, the intense pain died down and I felt back to normal levels of pain.

Over the next two weeks, I've noticed that I still have pain with the normal triggers but the intensity seems to be a bit less and it dies down more quickly. I don't know if its a coincidence or due to the procedure. I am now four weeks from the day of the procedure, and I would say there has been a 20-30% reduction of pain levels. I've read elsewhere that the improvement can happen over the course of a few weeks. Is this experience similar to others?

I am still considering other options (surgery, cryo, neurostim) and will post about those on the appropriate boards.

Bob

Thanks so much for the detailed report, Bob. My fingers are crossed that this lower pain intensity lasts. I don't know if the delay in effectiveness is common. It seems like pain changes (or, at least pain reductions) are slow with nerves so it would make sense that it could take a while to kick in.

April

Someone with username carolynm used to post about PRF and she said it would cause a flare-up in pain before it started to work. You could do a search on her posts.

Violet