Let the journey begin...

[ryan]

Hi everyone,
I am 28 male and since 4 months I suffer due to symptoms similar to PN. Symptoms started after short but intensive bicycle riding. Usually I ride bicycle very rarely. At the very beginning I had strange cold feeling at the tip of penis. These symptoms recovered 100% after 2 months, but just after that I started to feel burning sensation on my genital area. This burning pain is worsened when I irritate genital skin (e.g. by clothes). Pain is not worsened while sitting. I can sit for a long time and as long as I do not put pressure on genital area - there is no pain.
I had lumbar spine MRI - no anomalies.
I had dorsal nerve EMG - reduced amplitude and conduction velocity.
I live in Poland when no one is experienced in treating PN. When I ask doctors if we should diagnose PNE and consider surgery, they say - there is no such entrapment, nor surgery for that.

I am browsing this forum since a long time, but probably there are many users who are more experienced and could give me some advices where to seek help now.

[Violet M]

Hi Ryan,

It's true some of the European doctors don't believe there is such a thing as pudendal nerve entrapment. I guess my question to them would be -- then what is my diagnosis? If they can't tell you a proper diagnosis, then maybe it is time to look for a new doctor. There are European physicians who do believe there is such a thing as PNE. You can read the Nantes Criteria for pudendal nerve entrapment at the following link: http://www.pudendalhope.info/sites/defa ... iteria.pdf
Based on my experience and the experience of many other patients, I do believe there is such a thing as pudendal nerve entrapment.

Since you don't have pain with sitting, you don't exactly fit the criteria for pudendal nerve entrapment but some people have pudendal neuralgia without a nerve entrapment. So, I don't know what is going on with you but the goal is for you to figure out what is causing your problems and to get the right treatment. One place to start is to get an evaluation from a good physical therapist. You could call all of the PT's on the following list and ask them if there is someone they could recommend in your country. http://www.pudendalhope.info/node/60
You could also call the physicians on the following list http://www.pudendalhope.info/node/57
and see if they know anyone in your country who treats PN Often they attend the same conferences and they might know someone. If you can't find anyone in your country, you might have to travel to a specialist like so many of us have. Prof. Robert is retired. But there is still a French team: https://www.chu-nantes.fr/douleurs-pelv ... 71292.kjsp
http://www.univ-nantes.fr/site-de-l-uni ... 84356.kjsp

There are other good physicians in Europe too. Dr. Oskar Aszmann in Austria specifically deal s with the dorsal nerve of the penis.

Hope this helps you find someone who can give you the proper treatment.

Violet

[ryan]

Regarding local doctors who denies that someone might suffer from PNE - I am talking more generally. Currently I am under care of neurologist who is focused on resolving my problem (MRI, EMG, and other tests as soon as needed). However, her opinion about that is very clear right now - this does not seem to be any kind of entrapment, but rather single trauma and we should let the nerve to recover. I do not say that it's false because - symptoms are not worsened while sitting (or at least very slightly), some of symptoms have recovered without any special treatment, areas affected by pain have been slightly changed (moved slightly from the bottom to the top). Unfortunately this problem lasts for a very long time already and I am starting to feel really depressed because of that. That is why I am looking for anyone else help.

Thank you for recommending Dr Oskar Aszmann. I also noticed that in Switzerland, there is another specialist - Dr Mark Possover. Can you say something more about these doctors? Especially if they surgical decompression approaches matches my case. Maybe you can say something about cost of diagnosis and potential surgery for both of these doctors? I am afraid that I can afford very expensive treatment.

[Violet M]

I'm sorry, I don't know how much it costs to see these doctors. You can contact them using the information on our website. http://www.pudendalhope.info/node/57

I believe they take different approaches. Dr. Possover is a gynecologist and my understanding is that he uses a laparoscopic approach to surgery. Dr. Aszmann is a plastic surgeon and I think he takes an approach that is based on what nerves he feels are involved and where they are located. I think he can do the TG approach or the anterior dorsal nerve approach to surgery. You can do a search on this forum using Dr. Aszmann's name to see what patients who have been to him say. I don't think any of Dr. Possover's patients have posted here. If you have a friend who speaks French, you might be able to get more info about these doctors from the French pudendal neuralgia forum. Dr. Aszmann studied under Dr. Dellon in the US and published with Dr. Dellon. He has an excellent reputation from everything I have read. I don't know very much about Dr. Possover so I can't really comment much on him. Flyer28 on this forum may know more about these doctors than I do since he is in Europe. Maybe you could private message him and hopefully he will respond.

If you do go to a surgeon, keep in mind that their expertise is surgery. So unless you are at a point where you want to try surgery, you might be wasting your time. If you want to stick with a more conservative approach as your neurologist is recommending, maybe you could find a good physical therapist and try that for awhile. I'm sure you are aware of all the treatment options available since you have been following the forum for awhile. I wish I could say for sure what is the best thing for you to do but no one really knows. Sometimes it is a matter of trying things to see what works. I know it is very difficult. I wish you all the best as you try to figure this out.

Violet

[ryan]

Regarding Dr Possover and Dr Aszmann - I will try to find more information about them or will ask people directly.

I asked France doctors many time ago trough email but so far noone responded. Is there any better way to communicate with them? Maybe you can recommend someone who works as a coordinator for foreign people?

I am not sure if I understand correctly how people describe their symptoms. I know that PN can have different symptoms for each person, but what most people describe regarding PN is:
- irritation/burning pain
- or rather sharp pain that is sometimes unbearable (e.g. you have to stand and cannot sit more longer)?

My symptoms is more like burning pain or skin irriation now. It is worsened when irritate skin too much or I put too much pressure on genital area (e.g. by tight pants). Sitting/moving does not change symptoms. Applying creams or camomile on irritated area usually helps.

Sometimes I even wonder if I should consider something else than PN - some kind of ugly irritation which holds on due to unknown factor. I tried to exclude factors like: washing powders detergents, but did not excluded many other factors - e.g. allergy to my cat. However I am not able to explain why EMG test showed reduced amplitude and conduction velocity - maybe I always had such results and this is normal for some people? I think I need to ask my neurologist again.

If you have any other ideas what I can check to confirm/exclude PN - please let me know.

This is sometimes really painful and it takes away my joy of life, because I am not able to do things that I always did - activities, sport, etc. At the other side I am really afraid about surgery or even nerve blocks.

[Violet M]

Hi Ryan,

It is important to remember that you can have PN but not have pudendal nerve entrapment (PNE). According to the Nantes criteria, PNE is associated with sitting pain.

My symptoms were burning pain in the saddle area from an irritated pudendal nerve (PN). It felt like the skin was on fire. It was bad all of the time -- with and without pressure. I also had knife-life pain in one spot on the right side where the leg and perineum meet. It was worse when sitting. That spot was where the entrapment was. (PNE). The pain you feel when touching the area or putting pressure on the area might be allodynia, which is common with nerve pain. During the worst of PNE, no creams or topical ointments helped much. But later when I was recovering after surgery and the pain was more mild, topical ointments did help. PN pain can be mild or severe.

I guess what I don't understand is that you say you have pain when you put pressure on the genital area but you don't have pain with sitting. Doesn't sitting put pressure on the genital area?

Another thing to remember is that no two people are exactly alike when it comes to PN. So we can all tell you what our symptoms were but none of us will match yours completely.

Violet

[ryan]

I start to feel pain/burning sensation when I wear tight pants that put pressure on my genitals skin from above. It becomes irritated especially when skin is rubbing on clothes or whatever else. When I sit and my pelvis becomes compressed because of that - generally nothing happens, or at least symtoms are so light that I don't notice that.

I noticed another strange thing right now - allodynia has moved from genital area to abdomen area. When I check in web, I find that abdomen is innervated by genitofemoral nerve (genital branch) instead of pudendal nerve (dorsal branch).

[Violet M]

I eventually developed some abdominal allodynia also. I think there can be crosstalk between the nerves and as more and more muscles go into spasm over time from the pain, more and more nerves can become affected. The trick is to figure out the primary cause.

Violet

[ryan]

During recent days symptoms changed - allodynia dissapeared and again I have light pain at the tip of penis, especially when I sit for a long time. Pain is not unbrearable and usually last only a few seconds, but is inconvenient when repeats too often.
I found physiotherapist who specializes in genitals pain and pelvic dysfunctions. She suggested electrostimulation theraphy and biofeedback. I would like to try that.

I also got answer from Nantes team and they are able to consult me in June. The only thing I am afraid about is that they usually make diagnostic block to confirm PNE. Will I go numb after diagnostic block? For how long? What about erection and sexual contacts after block?

Another thing that is strange for me is that at least two doctors that I consulted with said that they had patients with pudendal nerve damage but never with such limited symptoms (only sensory fibers affected and only in such limited area).

[Violet M]

Hi Ryan,

Typically nerve blocks have marcaine (bupivacaine), an anesthetic that lasts for a few hours and then wears off. It can cause a numb feeling or loss of sensation for a few hours but I have never heard of it causing permanent numbness. I'm not sure if that is what the Nantes team uses for a nerve block but probably so so -- or something similar.

I think it's good you are getting a 2nd opinion from some experienced PN doctors.

Violet