New male suffering from PN

Abaddon · Post by **Abaddon** » Fri Aug 07, 2015 11:03 pm

Hi (unfortunately) everyone,

I am 32 year old male, suffering from almost one year for Pudendal Neuralgia.

All my problems started suddenly after “electric” impulse that went from the tip of my penis to perineum.

I was diagnosed by PNMLT (pudendal nerve motor latency test) and it looks like I have probably damaged or entrapped both nerves (left=5.45 / right=2.85 [ms]).

That disease ruining completely my life. I have following symptoms:
- Constant pain/burning/numbness at the tip of the penis,
- Pain during erection,
- Painful ejaculation,
- Occasionally pain in abdomen.

I was trying many drugs before I was diagnosed - including a lot of antibiotics - according to suspicion, that I might have some kind of infection. Most important of them: few times Levofloxacinum and Prednisonum therapy.

I made also a lot of tests of my urine and semen and tests for various bacteria, that shows that I am clear.

I have done MRI of my lumbar and lower pelvis and it also comes good.

For this moment I am taking 1800 mg of Gabapentinum per day and it reduce my symptoms for about 20 %, which is definitely not enough to have normal life.
I found that Forum and register on it, because I am looking for hope and new options for treatment. In nearest future I will try the PRF block which is probably one of my last option.

All best for everyone,

Abaddon

Violet M · Post by **Violet M** » Sat Aug 08, 2015 3:56 am

Welcome to the forum, Abaddon. I'm sorry to hear you are having all of those dreadful symptoms. Do you have any idea what caused your pain to begin suddenly? It sounds like you have found doctors who know the typical protocol for treatment of pudendal neuralgia. I wish you all the best with your PRF block. Do you know when it will be?

Violet

Abaddon · Post by **Abaddon** » Sat Aug 08, 2015 3:56 pm

Hi,

I know it will maybe sound stupid but before it starts I have a lot of sex. And few months before I also have few times, that during sex I have "numbness" feeling in penis.
I have quite good doctors, but to get them and to get the diagnosis I spent PLENTY of time and money. And now I am in point whitch I am.

I am going at 12.08.2015 to test-block. If results will be ok then a few weeks later I will have PRF. I hope it will work, because I am losing hope for finding a solution. This is I think one of the last option.

Pain is of course one of my problem. But bigger problem for me, is numbness in my penis. This problem make me totally depressed and I can not find any solution in "whole" internet. It will be the biggest blessing and gift for me, if anyone know what to do with this and know any treatment that can improve it.

Is here any man who deal with numbness penis problem??

I am fighting but also losing the will to live because of this. Eh...

Best for You and for all,

Abaddon

Violet M · Post by **Violet M** » Sun Aug 09, 2015 5:09 am

Numbness is a common complaint from guys on this forum. I think the treatment depends on what the cause is. Have you been evaluated for pelvic floor tension or musculoskeletal alignment problems? You really have a lot of options to try. Search the forum for posts on restorative exercise, electroschock wave therapy (ESWT), mindbody therapy, and myofascial release. Also check out the flyer on the homepage at pudendalhope.org for a summary of treatment options. I think it's always best to try conservative non-invasive therapies first.

Best,

Violet

Abaddon · Post by **Abaddon** » Sun Aug 09, 2015 4:40 pm

Hi,

Thanks for replay,

I know about all this treatment options and I try most of them with no results. I try PT for few months, exercises and I take big attention, what and where I am doing. Unfortunetly nothing work and I can't see any connections between this what I am doing and my PN. It is getting worse without any reason and in the same way better.

I am luck that my Doc, made quite a lot blocks in Pudendal Nerve and I think I can trust him. Honestly for this moment I don't see any other option and I think I simply MUST try this. I know the risk but what I can else do??

One more question. Why You think there are very few people on forum trying PRF?

Best,

Abaddon

Violet M · Post by **Violet M** » Mon Aug 10, 2015 4:27 am

Abaddon wrote:
One more question. Why You think there are very few people on forum trying PRF?

Not sure, Abaddon. I don't know how many doctors actually perform this procedure. I only know of a few in the US who do it for PN. Also, I think many people are choosing the least invasive options because they are less risky but I understand if you have tried many of them and nothing else is helping that you would want to try PRF. After all, I went for surgery so I understand why you would choose to try whatever options are available. I wish you all the best with it and would be interested to hear how it goes for you.

Violet

Abaddon · Post by **Abaddon** » Mon Aug 17, 2015 11:20 am

Hi,

so I had test block for pudendal nerve at 12.08.2015 with steroids. One day after block I was in so much pain that I had to use my "secret weapon" - Benzodiazepine. That med works perfect for me and always take all pain away.

Friday morning was great - until 5 pm I was almost pain free. Unfortunately from 5 pm all pain came back.

Now, few days later, everything is like it was before nerve block. I talked with my doctor in pain clinic and he said that maybe the steroids need few more days to start work. Honestly - it is hard to belive for me. I think the block simply didn't work for me or work only few hours at friday. What do You think? Is it possible that it need more time?

I also spoke about PRF and there is one BIG problem with this therapy. My doc said that PRF probably reduce my pain (good info) but it also reduce another nice feeling from my penis (very very bad info). He also said, that it is impossible to predict how long it will works - one week or one year. Because of this I think it is probably to risky for me. I don't want get my penis completely numb. Now, in good days (when there is no pain but only burning) I can have something, that is maybe close to normal sex. I am afraid, that after PRF I will not be able to have sex and no one will tell my for how long.

Another option faild:(

For this moment I am out from another options...

21 century medicine - unbelievable.

Best for all and if anyone have any ideas I will be grateful.

Violet M · Post by **Violet M** » Tue Aug 18, 2015 5:32 am

The marcaine that is typically used in nerve blocks may give relief for about a day and then wears off. It is used for diagnostic purposes. The steroid is to reduce inflammation and often takes several days to take effect. I don't really know very many people who had good long-term results from nerve blocks. I see them more as a diagnostic tool than as a therapeutic treatment but occasionally someone reports that they helped.

Is your pain unilateral or bilateral? What about your pelvic floor -- is it tense?

Violet

Abaddon · Post by **Abaddon** » Tue Aug 18, 2015 5:02 pm

As my PT checked my pelvic floor is not tens.

I think I have simply for some reason pudendal nerve damage/entrapment (probably dorsal).

My pain is bilateral. But it is hard to name this bilatera - all symptoms are in my penis.

Today at the morning I started to feel pain in my right buttock. It appears for a few seconds and come back again, after few minutes. I hope because of block I will not have new symptom.... That will be not good.

Now I am thinking what to do next. I am slowly start reading all posts about dorsal nerve decompression surgery. But for this moment, it is hard to imagine for me, that I will try that option.

On the other and, I am starting to get more desperate every next week with PN...

Best for all.

turalaghayev1 · Post by **turalaghayev1** » Wed Aug 19, 2015 10:09 pm

My pain started just like yours suddenly , pinch in the urethra and that was it I'm on fire for last 5 years . I'm taking 50mg tramadol once a day and pain Free all day long. But obviously I wanna get rid of this pain . I tried everything including ESWT with Dr Kirk Andrew no results , two nerve blocks dr Hibner -first helped me 1 month and second helped me 2 weeks . You guys not alone . I'm also interested in nerve decompression sergery , thinking Dr Aszmann , your thoughts ?

Health Organization for Pudendal Education