Numb Genitals & Diminished Libido (Desperate)

[CK85]

Hello,

I am a 31 year old male from London. My symptoms started in the spring of 2014. One day, my penis just felt really odd, it felt heavy. The tip of it started bending to the right when it was erect. That normalised but since the whole penis slightly points to the right hand side (slightly). Over the next two weeks this heaviness feeling lasted and I started to get a numb spot on the right hand side of the shaft. Over the coming months, the numbness started to spread to encompass more and more of my penis. 6 months down the line, the lack of sensitivity also started on my scrotum. I have also developed a lack of sensitivity near the anal region. My ejaculate also dribbles towards the end when it never used to. Today I am left with 95 per cent numbness on the whole of the penis and my libido has completely gone. I almost feel like an asexual. I am in such a desperate spot. I am not going to be able to get a girlfriend let a lone married. I have virtually no desire to be with a woman anymore yet I can still appreciate and deep down want a relationship but there is nothing fuelling it.

I have seen a urologist and a neurologist who were not able to diagnose this. I then saw a chiropractor who supposedly deals with PN and he reckons it is PN but he gave me new symptoms on my left leg (pins and needles in my foot) so I stopped seeing him. Currently I am seeing a Physiotherapist who is working internally through the rectum.

My concern is that for two years my nerve has been irritated or entrapped. I don't want to experiment with physio for another 6 months if it is not doing anything. That is another 6 months of compression and nerve damage. I am seriously considering pudendal nerve decompression in Vienna. If this was just pain (I actually don't have usual PN symptoms, pain when sitting etc) I may have waited it out and experimented with different approaches before considering surgery but the seriousness of this (the sexual dysfunction and paresthesia) makes me think this is an urgent case for surgical methods to be considered?

I would appreciate advice from more learned members.

Thank you
CK

[nonsequitur]

Just curious. When your pain started, were you suffering from high level of stress (new job, pressure, relationship problems, etc) or was it a completely uneventful period?

[CK85]

No not at all. Not sure if you are suggesting if this may be in my 'head' but it's not.

I do recall this is the same period that i started getting back into martial arts. I was doing a lot of stretching and high kicks the months before this started after many years of not doing it. I also only just remembered yesterday too that a few months before (i think, there is a chance this may have been after) injured my hip on the right hand side which left me with a sprain where the pain would also go into the lower back.

I have had MRIs of my lumber spine lower spine and pelvis. None of them showed abnormalities in the spinal roots etc hence leading myself and yhe physicians i have seen to conclude it is probably pudendal nerve related. The surgeon in Vienna has asked i get an MRI of my pelvis to include the urogenital diaphragm.

[nonsequitur]

CK85, all pain starts in the body but is interpreted or modulated by the brain. Also all pain is real and not invented. You can have a broken bone and not experience pain when still. An athlete can have a serious injury and not experience pain on the field. The same athlete will experience horrible pain slightly twisting an ankle an hour after a game.

Here is the famous TED talk by Dr.Lorimer Moseley a world expert on pain:
https://youtu.be/gwd-wLdIHjs

Or the excellent presentation by Dr. Dan Clauw, director of the pain center at University of Michigan:
https://youtu.be/pgCfkA9RLrM

Stress lowers the pain threshold -in your brain- which makes it possible for pain to be then self-maintained even after any injury has healed and the stressful period has ended. The more pain you experience, the more guarding and muscle spasming. It is an infinite loop.

But it is not your case apparently. Did your urologist put you on quinolone-class antibiotics in case it is bacterial prostatitis? What about peyronies disease?

[CK85]

I don't really have any pain at all. The main symptom is genital numbness/erectile dysfunction. I did over the past two years especially within the first 9 months, get very slight pain at the tip of the penis (strangely more so on the left hand side) but this subsided. Even when I had it it would come and go and was not very bad pain.

I wasn't put on antibiotics for prostatitis. My prostate was checked by a urologist and semen was taken. No infection found and my prostate was normal size however it was tender. According to the urologist, prostatitis would not cause numbness of the penis. I haven't been checked for Peyronies Disease.

[nonsequitur]

SIde of the penis pain is from the dorsal nerve. The numbness you mention can be seen in cyclists. Or diabetes?

Did or do you suffer from other comorbid pathologies like IC or IBS? Anything else of interest in your medical history?

I don't have any suggestions but please don't get fixated on the pudendal nerve. Get a 2nd or 3rd opinion before doing anything drastic. I have experienced first hand surgeons that were way too obsessed with the pudendal entrapment diagnosis and eager to offer me surgery. I had 2 failed decompression surgeries.

[stephanies]

Were the neurologist and urologist concerned by the numbness that you have? They must have thought it quite abnormal. Did they suggest an MRI? Has PT helped at all? I understand your frustration and sense of urgency. I am not familiar with treatments, including surgical intervention, for numbness, but I hope that you can find a doctor who can give you some answers and direction.

Sincerely,
Stephanies

[CK85]

The pain on the left hand side was on the left hand side of the tip of the penis. Then for a couple of months I had a burning sensation in the tip too which resided.

I didn't have any other pathologies. I'm also not diabetic.

That's the thing, no one took this seriously. And now I am furious. I put too much trust in the doctors i.e. their casual attitude to it made me think (when it wasn't as bad as it is now) it wasn't that serious. My first GP wouldn't even refer me to a urologist when I told her of the numbness. I had to go privately. Only when he tested my numbness (by touching my penis) and confirmed it did my GP then refer me to a neurologist. Even the urologist didn't tell me how urgent it was to get an MRI but he was the one who suggested it. I was then referred to the neurologist who took MRIs of my lumber spine, lower spine and pelvis. Again, these were not made urgent by him. The whole process from seeing the GP to having MRIs took a year and a half! The neurologist told me there is nothing more he can do for me. This is pathetic.

What am I to do now?

I don't think the internal pelvic floor therapy is going anywhere. I've only seen the therapist 3 times though over the course of a few months. He is going to show me how to treat myself at home 3 times a week internally.

But the thing is, there is no clear diagnosis on what this even is. My physio has identified a very tight pelvic floor though, I almost shriek when he works on me in there. The lack of sensitivity around the anal region too is what makes me think it is pudendal nerve related. What else could it be? I don't know.

[nonsequitur]

One last thing. Have you been checked for an hernia? Albeit your symptoms don't exactly match.

Western medicine is at a loss treating chronic symptoms. It is all based on trying to find an abnormality, any abnormality they can find to explain what you tell them you feel. You have an extra twist with experiencing numbness instead of pain.

But while you are upset at physicians that do not understand your situation, please be aware that doctors that say they do indeed understand are often mistaken.

I was in the same situation until I realized, after 10 years of PT, nerve blocks, 15 doctors, and surgeries that my chronic pain was a somatoform pain disorder, That the physicians that sold me on 2 consecutive PNE surgeries were misguided.

The fact is, many people that had some form of mental trauma experience *absolutely real* pain later in life with real body dysfunction --like pelvic floor dysfunction. It is documented that Kids that experienced sexual abuse or even mental abuse have a higher chance of experiencing chronic pain, IBS, IC, fibromyalgia etc. later in life.

[stephanies]

Have you being doing the PT long? The tight muscles can cause pudendal nerve dysfunction, like pain or numbness. However, a problem with the nerve can also cause muscles tightness. It is difficult sometimes to tell which came first. Can your physical therapist suggest a doctor who will give you a thorough exam? You could see Dr. Aszman in Austria for an evaluation, as you mentioned, keeping in mind that he is a surgeon and will likely be looking at your situation from that perspective. I assume your MRI came back normal?

Stephanies