Erectile Dysfunction might be Pudendal Neuralgia

[Noblenutria]

I am 34 years old. I first started experiencing sexual problems when I was 28. I remember the exact day my penis stopped working. It was December 15th 2011. Before that I could have sex several times a day easy. Now I can only have sex with viagra or Ciallis. A week after first experiencing sexual problems I noticed my hair falling out. I gasped when I looked at myself in the mirror. My hair has thinned a great deal since this has happened.

I went to a doctor to get blood work done. I have low testosterone. People told me that having high testosterone is what makes your hair fall out but I have read that low testosterone can also cause this to happen. It is at the low end of the normal range. It is usually between 200 and 400 nanograms per decaliter. Normal range is between 300 and 1000. It is possible this is normal for me. I never had my testosterone checked before I started having sexual problems.

I had other symptoms which suggest nerve damage. Right after I first noticed sexual problems I also noticed post micturation dribble. This is when urine keeps dribbling out of your penis a long time after you have pushed out all the urine possible. At first this was one drip. Now it like 20 drips. I spend a lot of time shaking my penis to get the drips out. I have switched from urinals to toilets because in a stall I can use toilet paper. If I hold toilet paper to my penis while moving around I can get more drips out.

I have done a lot of cycling in my life. I switched to a recumbent in case cycling was the cause of the problem. There is another thing it could be. Back in 2001 I fell over a waterfall. I landed right on my perineum on a bunch of rocks. I had ED for a few days after that but I went back to normal.

I have read through the forums and noticed most PNE problems are of severe pain in the perineum. I have not experienced any pain. Not even numbness. I do have a very unresponsive penis though.

I have seen a urologist who said there was nothing he could do. I have seen an endocrinologist who tried exogenous testosterone but that did not change my condition. My best guess is I damaged my nerves in the fall or maybe through cycling. I think that the nerve damage caused my ED and may have even caused my low testosterone. Maybe I damaged nerves having to do with testosterone production. My desire to have sex is very low. My quality of life is suffering from these sexual problems. It is getting worse too. It takes more viagra to have sex than before. When I take a lot of viagra I get insomnia. When I don't take viagra I feel like shit because I am not having sex. I have a girlfriend. She is very understanding but still, things would be much better if I could have sex without vaigra. Viagra allows me to have sex but I don't feel desire. I haven't been horny since 2011.

Has anyone had any luck with pudendal nerve doctors with sexual problems?

-Jacob

[April]

Hi Jacob,

That all sounds very difficult. PN usually does involve pain of some sort, but there is a lot of variability with pn. Have you seen only one urologist? I think it could be helpful to get a second opinion. At the very least, a doctor should be able to direct you to another specialist rather than simply saying s/he cannot help you. Have you met with a pelvic physical therapist? That might be helpful for identifying all the areas where you have nerve problems.

April

[Violet M]

Have you had an MRI to rule out any spinal problems due to the fall you had? Sometimes musculoskeletal problems show up over time after an accident.

Sometimes it isn't just one thing that triggers a medical problem but a combination of things adding up -- like the cycling, the fall, etc. You might want to see a physiotherapist or manual therapist for a musculoskeletal evaluation and pelvic floor evaluation to see if your fall might have caused some damage or to see if you have any pelvic floor tension or restrictions that could be affecting the nerve.

Violet

[Noblenutria]

So far I have seen two endocrinologists and two urologists. I haven't seen any pudendal nerve specialists or physiologists. I had an MRI done to see if there was anything wrong with my pituitary gland but nothing for by spine. I have heard about an MRI which focuses on the nerves in the perineum. This sounds like something I should try. I will contact my doctor and see if I can be sent to a specialist.

[April]

My sense is that nerves are not themselves visible on the MRI, but other things in the pudendal nerve area are visible and can help doctors determine if something is impinging on the nerve. I think the pn surgeons have an MRI protocol that they have patients use, but if seeing one of those doctors is inconvenient, you can also email Dr. Hollis Potter's clinic (she's a radiologist) and get her protocol. I did this recently, and they sent it right to me.

April

[Noblenutria]

I think the pn surgeons have an MRI protocol that they have patients use, but if seeing one of those doctors is inconvenient, you can also email Dr. Hollis Potter's clinic (she's a radiologist) and get her protocol. I did this recently, and they sent it right to me.

What is the radiology protocol for? Is these instructions which a pudendal neurologist sends to a radiologist to get the right images?

My next step is I know I need to find a doctor who specializes in Pudendal nerve issues. I have an appointment with my doctor to see if she can refer me to someone. Can any of you point me towards a good doctor. I am willing to travel. The northwest would be good though. Are there any doctors in Seattle, Wa Portland, OR, or maybe in San Francisco.

[Mod 18]

That's right---the protocol describes what type of images are taken. It's used by the tech doing the MRI.

There is a list of doctors and physical therapists on the home page. There's at least one pain doctor in Seattle who is knowledgeable about pn and offered treatments (Dr. Attaman). He's posted on this forum before. I'm not sure if he makes diagnoses, but he might be a good doctor to start with if he is close to your home. I'm sure he could direct you to a pt as well.

April

[Violet M]

There are some good PT's in those areas who are on the list of PT's that you can access from the homepage at pudendalhope.org. They might be able to direct you to a good doctor as well.

Violet

[Noblenutria]

Do you guys know if there are surgeries which can un entrap the pudendal nerve? I have little faith in physical therapists to help me. I am an acrobat and I stretch all the time. I doubt that more stretching is going to help me.

[April]

There are decompression surgeries that are designed to remove a nerve from an entrapped area, but that is usually the last resort because those surgeries are not consistently successful and some patients even get worse. I have had pn for 3.5 years, and that will be my very last option (even though it feels to me like my nerve is entrapped). So doctors and pts normally advise patients to try more conservative treatments first. A pt may be helpful for diagnostic purposes, so you may want to start with a pt just to get some diagnostic feedback and to help you find a local doctor who could also help diagnose your problem.

April