Post Pudendal Nerve entrapment surgery

[Morena77]

Hello all, here is my story, which actually is my husband's story.
I will begin with the facts: he is almost 40 years old, he went through Pudendal Nerve surgery to release the entrapment bi-lateral about 1.5 years ago in France (after he suffered from the wrong diagnosis for about 7 years before the surgery), since where we live, there isn't knowledge at all about this kind of procedures.
since surgery and for the 1st time in 7 years he was meds free, we thought that finally he got his life back, slowly he started working again, and we actually were happy that finally we could begin to live our lives like a normal couple. but about 8 months ago his situation became worse, and is worsen every day, even while i'm writing this lines. He started to have sever abdomen pain, with no reason. this abdominal pain, prevents him to sleep, and usually he wakes up from the pain. he has urgency to urinate, and urines about 10 times per hour (not normal), he has difficulties to go to the toilet to poop, and nothing comes out unless he does an anema. the problem is that not that he has severe abdomen pain, but also he doesn't feel the lower part of his stomach, and feels like it's numb and doesn't have the ability to use the muscles to push - like everything is working in an abnormal way.

The main problem is that the surgeon is avoiding us. we explained what is going on, and he told us that he doesn't operate for the 2nd time, if he succeeded to release the never for the 1st time, and is suggesting now, as the surgery did not lead to improvement, to do a stimulation of the sacral roots or of the spinal cord. honestly, we do not think that his suggestion would help and if my husband goes through this, if this might cause a bigger problem.

We know, reading from other people experience, is that they went through 2 and 3 surgerys, and only then the problem was gone, and we really do not know why, he cant go through another surgery, since the feeling is that the nerve got trapped again, or the nerves grow badly.

We really need some kind of guidance. my husband wants to die, since he cant bare the pain anymore, and the medication doesn't help any more.
Please help us, please help me to get him to a doctor, he is the love of my life, and we are desperate.

He really doesn't want to continue to live anymore...
please help.

i'm sorry for the desperate massage, but we really need help.
thank you for reading this.
sincerely,

Morena.

[Violet M]

Hi Morena,

I'm very sorry to hear about your husband's severe pain. There are several doctors in France who treat PN. I don't know if a different PN doctor in France would consent to treating your husband. Have you contacted any of them? You may also want to contact Dr. Aszmann in Austria. I don't know if he does repeat surgeries. Contact info for other European docs is at the following link: http://www.pudendalhope.info/node/57

I will send you a private message with some other information.

Violet

[April]

Hi Morena,

That sounds awful. I'm so sorry. And it must be extremely frustrating to not get any help from the doctor who did the surgery! I hope Violet's suggestions are helpful.

I have one very small suggestion. I take vesicare for my bladder frequency, and it works well. I didn't go ten times an hour, but I did often go a few times an hour. I know your bigger issue is finding him a new doctor, but if he wants to try to reduce those bathroom trips in the meantime, you could ask about getting this prescription. I think a primary care doctor might be able to prescribe it.

Keep us posted.
April

[Morena77]

Hi all,

thank you for your answer.
We are now trying to see if a doctor from the US will treat him. As for Dr. Azmann from Austria, he has a different method of operation, and my husbands prefers to do the same surgery he did before.

As i wrote the main problem is the Left side. This past Thursday we saw a specialist of the pelvic floor, that did him anal US. He came out from the test saying to me: "you see, i'm not crazy as everyone here thinks, read for yourself", well in the results it says that on the Left side, the pudendal Nerve in the Alcock canal is thickened. this is something that we know is not suppose to happen, and we are sure that this is what causing him such pain. of the Never is thickened inside the canal, that means it doesn't have room, or maybe its been compressed or i don't know, but i guess this is a medical - physical prove that something went wrong with the surgery.

Do you have any recommendations regarding if we should try the same doctor that operated him, and in parallel try to reach to an American Doctor. do you have any recommendation as for a USA doctor?

Thank you for hearing and helping.
best,
Morena

[Violet M]

It's hard for me to comment, not being able to see the actual ultrasound report, not knowing much about your husband's history, or what kind of surgery he already had. It sounds like your husband has a particular surgery approach he is interested in so if his desire is to come to the US, you can read about each of the surgeons and the approach they use at the following link: http://www.pudendalhope.info/node/58 What approach is your husband interested in?

The only one I know for sure who will do repeat surgery is Dr. Hibner but he does not treat men anymore. You would have to contact the other surgeons to see if they would do a repeat surgery. But really, you have excellent surgeons in Europe who are more experienced than most of the US surgeons, and who would probably do the surgery for much less money, so I'm not sure what the advantage would be of coming to the US. Keep in mind, if your husband formed a lot of scar tissue after the first surgery, and if scar tissue is a problem, then he may form scar tissue again after the next surgery. That is something to ask the surgeon about.

Has your husband had an MRI to see if there is an impingement at the sacral nerve roots? Seems like that would be important.

Violet