Health Organization for Pudendal Education

Very excited to try PRF for my Pudendal Neuralgia/PGAD on Nov 13 with Dr. Attaman, who has posted here on the forum. I tried to get an appt with a closer doctor, Dr. Howard Richard, who is within driving distance, but was unable to. So instead I'm flying across the country. If the treatment works for me, my husband has agreed that we'll be moving out to the Seattle/Bellevue WA area from northern VA/DC area. We had talked about moving away from here anyway, so it's not a totally new discussion, although this would set a definite move timeline of about 6 mo.

Good luck, puffsplus. Let us know how it goes.

April

One week to go. I really hope this works. The Gabapentin at 900 mg is working a little bit, I can tell. Sex is less painful. I have just gone up to 1200 mg. But, it's horribly sedating, gives me double vision, and worst of all -- all of a sudden I'm having periods of suicidal thinking and I'm having crying spells. The sedating effects have waned a bit, so I'm hoping they will go away completely. Will the mood effects go away too? I hate having a hard time leashing my emotions like this. I'm reading that Gabapentin can trigger these sorts of mood problems and suicidality in some people. If the PRF doesn't work or only gives me very minimal or short lived improvement, then I'm stuck with taking Gabapentin and lots of ibuprofen as my only means of pain relief, barring the actual surgery. And that's an extremely depressing thought.

I had some problems with gabapentin too so I understand your frustration. Have you considered lyrica instead? It is a similar drug although people tend to report better relief and fewer side effects from it.

Violet

A couple thoughts to add to Violet's suggestion, you may want to call the doctor given the side effects you are having and I would not increase the Gabapentin until they subside. The first time I tried Gabapentin I worked with the doctor for guidance, the second I had less disturbing effects than you so I just slowed the increasing. Good luck
Janet

Violet M wrote:I had some problems with gabapentin too so I understand your frustration. Have you considered lyrica instead? It is a similar drug although people tend to report better relief and fewer side effects from it.

Violet

My GP dismissed my question about Lyrica saying it was basically the same thing as Gabapentin. If I have to be honest, I'm realizing that Gabapentin really isn't doing much. The side effects are diminishing, though, including the mood disruption. Yay.

I think the PRF is my last best hope here. I don't know what I'll do if that doesn't work. As for pain relief, my GP also told me to use Alleve instead of Ibuprofen because it lasts longer.

You could ask your GP about amitriptyline. I think that has fewer side effects than gabapentin (I'm on both) and is a common medication for nerve pain. I recently switched from nortriptyline back to amitriptyline (I'd been on it before), and it's been great. I think I'd developed a tolerance to nortriptyline, so it wasn't helping me much. But on the amitriptyline I'm sleeping continuously through the night most nights, and I have a little less burning. It is also sedating, but that can be helpful if you take it at night.

April

Well, I just came back yesterday. Dr. Attaman was fantastic, as were his staff. I had the Botox injections into the obturator internus muscles and the PRF bilaterally on both pudendal nerves. The first day I had an ultrasound-guided nerve block to confirm I had pudendal neuralgia -- well, yep, I do! My right side OI muscle and sacrotuberous ligament are also tender, but not my left side. Hmm.

So the treatment was pretty much uneventful. Only the first Botox injection really hurt. Curiously, it gave me a really sharp pain in my left knee; I'm convinced one of the nerves in my leg got twinged by the needle. The rest was just normal and expected pain. It does feel odd and slightly disturbing to have a needle digging way down deep inside you while Dr. Attaman is locating the correct nerve, I will say that.

The PRF itself is not uncomfortable at all, I think. Just a tingling. The worst part of the procedure is all of the needle sticks and then the needle positioning the Dr. has to do to hit the correct nerve. It's amazing he can be so accurate, even with the image guide, just because there are obviously many peripheral nerves in that area, not just the PN. Once he locates the nerve, though, it's easy from then on out.

And even though he told me the effects wouldn't really start kicking in for about two weeks, I can already tell things are better today. I still have mild pain, but I'm sitting up in bed typing this, something that would normally cause me a great deal of discomfort, and it's barely registering.

So anyway, the treatment was a success, I have to give Dr. Jason Attaman in Bellevue a very positive review, and hopefully this will all last at least six months for me!

That is wonderful! Do you think both treatments are contributing to your reduced pain? Or, do you think it's just one of the two at this early point?

April

April, I don't know! So the Dr. mentioned that it will be a couple weeks before full effects take hold. I will post an update at that time to let you all know how I'm doing.

I asked him point blank, "How will I know how much is the Botox, and how much is the PRF?" He said, "As long as it works, who cares?" I suppose that if I wanted to know for certain, I could just try one or the other next time I go.