Health Organization for Pudendal Education

Thanks to this website I found the self-diagnosis "pudendal neuralgia" and the right doctor. Summary: fall from a height of 8 meters, break and crush several vertebrae, spinal stabilization surgery, 6 months corset -> back pain, loss of sensation in the anal and genital area and allegedly neurogenic pain in the sacral region. None of the numerous specialists recognized the classic symptoms of pudendal neuralgia: Limited constant pain while lying, intensifying with each type of stimulus, pressure, movement, standing, stool ecc. Sitting possible only with seat ring. Foreign body sensation, spasm, sensation of explosion in the anus. Opiates or Lyrica have no effect.

After 5 years and thanks to the internet I arrived to the self-diagnosis, which was confirmed by Prof. Dr. Aszmann (Vienna, Austria) The accident had caused a thickening of the ligaments that put pressure on the pudendal nerve. Additionally, the entire plexus was bruised and badly damaged due to a Periformis syndrom. Prof. Aszmann liberated the nerves, the decompression surgery was successful. There was an immediate improvement in sensitivity in the anus and genital area, but the painful spasm or foreign body sensation remained. Now 5 months after the surgery I still hope that the nerves regenerate slowly. On Internet circulate statistics with a success rate of 50%. My expectation to the operation was greater than the result, but I would nevertheless take the same decision again. Whether the nerves recover or are too badly damaged cannot be foresee even by the best surgeon. Can anyone report a significant improve several months after the surgery?

THANKS from an austrian patient!

Hi Rena,

Wow, that was a major fall! I'm glad you were able to see Dr. Aszmann.

My recovery from surgery took many months. I took opiates until 9 months after surgery. Between 9 months and 18 months after surgery I still had many bad days but slowly more and more good ones. The recovery time takes a lot of patience. I wish you all the best with your recovery.

Violet

Hi Rena,

So sorry you are having such a hard time. I also had surgery with Prof. Dr. Aszmann a year ago. I am doing very well now, but it has been a long road of good days and bad. I have had more and more days of very little or no pudendal nerve pain now. The pain I still have is the posterior femoral cutaneous nerve pain, but slowly, slowly that is getting better too. This is a very long journey. I am also getting off of meds. I am cutting the neurontin in half and I just take 1/2 to 1 tramadol a day. I am much more active than before surgery.

I wish you very good luck with your recovery, but be patient with yourself. I really think 18 months to two years is the reality. It is worth it if you take it slow.

Best wishes.
Barb

Barb I am considering him for surgery. Could you tell me if he cuts both ligaments in his tg surgery .Thank you..Robert

Aszmann has a different method how to arrive to the nerves than all others. He is really good and nice, of course short of time, but responds to emails quite quickly. He does not cut legaments and I could walk the day after the operation limping only a little. The cut is long, but obviously created little damage inside. I had some spasm in one leg afterwards, but one month after the surgery I was back to "normal". The fotos he took of the operation showed, that my plexus was reduced to half of the normal width. Certainly the operation in aprl this year was perfect and the next months will show if the nerves can recover...

Hi Robert,
As Rena said, Prof. Aszmann does not sever the ligaments. He did notch my sacrotuberous ligament to give the nerve room to glide. I was walking the next day also. I only spent 1 night in the hospital and I was able to do some site seeing while I was in Vienna. I would advise taking it slow. I did a little too much site seeing and had to stay in the hotel the day before we flew home.

He really is a very nice man and a very skilled surgeon.

Take care.
Barb

Barb, it's really good to hear that you are doing so well now. So happy for you.....

Violet

Thanks Violet......keeping my fingers crossed that this good feeling will continue. I am still proceeding cautiously, but I am much more active, which is such a good feeling. I am still struggling with the SI joint on the opposite side from my surgery, but that pain is not as bad as PN pain. Can't wait until I can start to do some core strengthening, but I am walking for now......will wait a little longer for the core.

Thanks for your encouragement!

Barb

Hi Rena,

You said that you had a loss of sensation in the genital and anal area that was relieved by surgery. This is my main symptom, and it has gradually worsened. I have a couple questions for you:

1) Did this loss of sensation affect your orgasms? Mine have greatly diminished in intensity.

2) Did all your sensation return after surgery, and is it still there now?

3) How long did you have these symptoms before getting the surgery?

Thank you for sharing your experience. I'm glad you have improved and I'm sure you will continue to!

After several private inquiries, I would like to help again with the decision “surgery yes or no”: indication for Pudendal neuralgia: Sitting nearly impossible, foreign body or cramp feeling in the anus, the constant pain is bearable when lying down, increasing with any type of stimulus like pressure, vibration while driving, moving, standing, ecc. An operation can only help, if there is a mechanical problem, for example: Pressure on the pudendal nerv. A magnetic resonance of the pelvis helps to diagnose it accurately. The results, however, should be viewed strictly from a neuroradiologist. (My "normal" radiologists did not recognize the problem!!). More specifically is the diagnosis with ultrasound-X, which is offered only by a few specialists, such as Dozent Dr. Bodner in Vienna. Prof. Aszmann sends all patients to Dr. Bodner, who has much experience with patents with Pudendal problems and who shows also alternatives (infiltrations, Botox, physiotherapy). It is important not to wait too long with the decision, if you are lucky enough that the diagnosis was made relatively soon after the trauma. A surgery that reduces the pressure on the pudendal, supposedly helps almost 100% if it is made within one year. After that, the chances of success decrease. For me, 5 years were obviously too long: however 30% improvement after 9 months operation. In any case, I would - despite not quite fulfilled expectations - again decide to have the operation. If anyone ever comes to Italy, I am also available for a personal exchange of experiences. You can stay with us in Tuscany http://www.hotelprategiano.com the nearby Hotel Prategiano.