Health Organization for Pudendal Education

My experience was just like Karyn's with Dr. Quesada three times except that I did not feel too bad in actually getting the blocks and did not need sedation. But I can say it will be a cold day you know where before I EVER get another one!

Grace

My last pudendal block caused me a 2 month flare that was horrendous! But my first 2 did provide me with some much needed short term releif (4-8 weeks). I have had much greater sucess in terms of pain management from S2 and S3 steroid epudural injections, botox and from pelvic sympathetic blocks.

And to address negative things others say about certain doctors and pn blocks, all I can say is that every time someone has any type of medical procedure there is risk, and every nerve block you have is differrent regaurdless of whether its the same person, same doctor or whatever. I have never blamed my doctor for any flares or negative responses that I have had. Our doctors do the best they can with the limited tools they have for this deadful disease. You never know how a medical treatment will affect you and you have to weigh the pros and cons of your specific situation and the severity of your pain. Hopefully one day medicine will have better answers for us. But unfortunately for now that means that some of us will suffer either from the limited medical options there are for us or for trying something new that has not yet been proven.

Elizabeth

I gotta agree with GraceUnderfire. No more.

elizabeth.w wrote:And to address negative things others say about certain doctors and pn blocks, all I can say is that every time someone has any type of medical procedure there is risk, and every nerve block you have is differrent regaurdless of whether its the same person, same doctor or whatever. I have never blamed my doctor for any flares or negative responses that I have had. Our doctors do the best they can with the limited tools they have for this deadful disease. You never know how a medical treatment will affect you and you have to weigh the pros and cons of your specific situation and the severity of your pain. Hopefully one day medicine will have better answers for us. But unfortunately for now that means that some of us will suffer either from the limited medical options there are for us or for trying something new that has not yet been proven.

I can't speak for anyone else, but it never occurred to me to blame the doctors who are trying to help us, either. The problem is, the blocks are currently a mandatory requirement for diagnosis. It's kinda hard to weigh pros and cons when you don't have a choice, if want to be treated. I'm not dismissing that some people get a brief period of pain relief, but it seems more have adverse reactions that escalate pain to phennominal levels.
Warm regards,
Karyn

I agree with Elizabeth and meant no negative inference to Dr. Quesada in reference to my nerve blocks. It is quite frustrating that we have to have this series in order to get diagnosis/further treatment. I am concerned about my upcoming visit to Dr. Hibner because it seems as though he sometimes recommends botox. My husband works for an FDA regulated company and in no way will support botox. Also, it is out of the question because our insurance doesn't cover it. So I am hoping this doesn't mean he will rule out treating me . . .

Grace

Krista,

You will be having nerve blocks done by a neuroradiologist under CT guidance. This is as good as it gets to the best of my knowledge. If your pain is unilateral, you can ask to have the block only on that side. And you will also have the PNMLT and EMG done the day before. You will have a PT consult that is extremely thorough to see if you have any musculoskeletal issues contributing to your pain. My point here is that it would not make much sense to go to someone for your blocks just because they are closer to your home when you can get so much in Houston in a 2 day visit.

More than likely you will have some complete relief for a few hours, which will feel wonderful. Right now I am hanging onto that memory to keep me going when my nerve pain is at its worst. I think Dr Renney can only have meant that permanent damage is extremely unlikely.

Good luck with your evaluation and let us know your results,

Jeanie

I agree with Celeste's advice to try a valium suppository. They're not available in Australia. I used an anti-inflammatory suppository when the flares were really bad and it helped a lot. (Voltaren is what is available here in Oz.)
I still take oral voltaren now and again to help with myalgia pain. Usually occurs in the days following physical housework. (ie, painting or moving furniture.) i'm still not ready to take on these tasks but i do it whenever I'm having 'good' days.

Catherine

catherine a wrote:I agree with Celeste's advice to try a valium suppository. They're not available in Australia. I used an anti-inflammatory suppository when the flares were really bad and it helped a lot. (Voltaren is what is available here in Oz.)
I still take oral voltaren now and again to help with myalgia pain. Usually occurs in the days following physical housework. (ie, painting or moving furniture.) i'm still not ready to take on these tasks but i do it whenever I'm having 'good' days.

Catherine

Even a prescription for a daily oral dose can help some people. I do know that for some who are just really terrified of the nerve test itself, it's recommended to take a Valium before it so as to help with coping. It doesn't change the result of the test.

I've had 3 nerve blocks done by my pain dr. He is not a pn specialist but taught himself to do the blocks and he uses ct and xray for guidance. I am sedated and am not aware of anything when he's performing the blocks. I always feel numb immediately afterward and I love that I'm not in pain. It usually wears off after 5 or 6 hours and the pain is back. Then usually by day 2 or 3 the steroid kicks in and I feel a little less pain and then some pain at the injection sites. It's not terrible just a little sore. Each nerve block has worked a little better than the last. This is the meds he uses in the block: Depro-Medrol, Marcaine, Sublimaze, Versed.

Hi Griff!
That's great the the blocks provided some pain relief for you! It's nice to get different perspectives and outcomes!
How long did the "less pain" last?
Warm regards,
Karyn

The "less pain" usually last about two weeks and it been 16 days since my last one so the pain is back. I'm wearing my tens unit today ):