Skin Color/Texture Changes - Can anyone relate?

[tyler_29920]

Hi everyone,

I am a 29 year old male who's been having problems in some capacity for the last 10 years, but mostly for the last 3.5. In the past month and a half I've had a new symptom and I'm wondering if anyone here has dealt with anything similar. I have been dealing with diminished sensation in the base of my penis and scrotal skin for the past few years, but it's gotten worse in the past month and a half. As it has worsened, my scrotal skin started to get hyperpigmented and thicker. It also developed a leathery/sticky texture. This then spread up my penis within a week. Now my entire penis and scrotum are much darker than they normally are (I am fully caucasian) and the skin is no longer smooth but feels either sticky (as if I am sweating a little) or leathery (dry,rough) pretty much all the time. It is slightly better when erect but not by much. Moisturizers do not change this. Lube, when applied, turns to a glue-like feeling rather quickly. I have seen 2 dermatologists and 2 urologists as well as my PCP since this problem developed, and no one has had an answer, although they all say it isn't dangerous. They ruled out eczema, lichenification (it doesn't itch and I haven't scratched, although I have in the past), allergic reaction, malignancy, or pretty much anything else that comes to mind initially. I don't know if it's worth noting or not but this happened not long after using petroleum jelly as masturbation lubricant (which I had done before) - sorry for TMI but just giving the details. Generally considered a very safe product, so not sure if that matters.

Obviously, I am bewildered, frustrated, and very nervous. I wanted to lead with this to paint the picture of the problem. Here is my backstory, for reference and context. I am open and grateful to any thoughts:

I’ve had groin pain for over 10 years. I believed it to be epididymitis because I had testicular and vas deferens pain in my right testicle after ejaculation or intense activity. Over time, I went from having the urge to masturbate 2-3 times per day to once a day tops, until I became sexually active and if I masturbated, I wasn’t confident that I could perform that same day, so I would strategically avoid masturbation if I thought I was going to have sex.

As a teenager, I also began to experience PGAD and constantly felt the need to touch the tip of my penis to “climax,” or to resolve imminent buildup. This could have been dozens if not over a hundred times a day. I just felt the need to force a contraction, which was pleasurable.

I continued experiencing painful ejaculation and post-ejaculation in college. I have never had any STD’s or infections. Occasionally, I would get stabbing pains upon ejaculation in my pelvic floor. I was always able to bike, but about 4 years ago, it became very uncomfortable to do so, and I would experience lasting pain for a few days after if I did.

3.5 years ago, while experimenting with prostate massage during masturbation, I was overly aggressive with myself. I was masturbating while using my finger internally to stimulate my prostate, but was very rough and was using all different angles forcefully, with lube and a glove for probably 45 minutes. I ejaculated and felt no pain, but it was extremely intense. The next day, I masturbated regularly, even though I didn’t feel the need to. The morning after, I woke up and my body felt entirely different. I could not feel pressure in my prostate or bladder. I felt as if I had erectile dysfunction, like I would not be able to get an erection if I tried. Most alarming was the fact that the bottom half of my penis was numb and had no reflex to being brushed by my finger, and the same held true for my inner thighs and my lower abdomen. They weren’t 100% numb, but I felt no pleasure.

I had no trouble using the bathroom, and still don’t. The first time I ejaculated after that (which was probably a week), I noticed that my pelvic floor/feeling of prostate were not engaged in the orgasm - it was as if they had been shut off, and I could only feel orgasm through the head of my penis, along the top of my penis and into my stomach, but not deeply. I also had no urge to ejaculate now. Whereas in the past, if I went three days without sex or masturbation I felt a physical need to ejaculate, I felt none, regardless of whether it was a week, 2 weeks, etc. My bulbocavernous and cremaster reflex were, if not totally gone, close to gone.

I saw a urologist who was unsure of the problem. I had seen him previously for my past pain issues and he suggested prostatitis, which I had heard before but wasn’t sure I believed. He and his PA suggested pelvic floor physical therapy. They also ordered an ultrasound, which showed only a small hydrocele in my right testicle and a small varicocele in on my left side but nothing concerning. My bladder and prostate were ok. I had been given a prostate exam months before and it was normal. I also had ultrasounds of my kidneys, bladder, prostate and scrotum, all normal.

I went to see a neurologist and he gave me a basic reflex test for all major nerve diseases, which was negative. At my request, he ordered an MRI. My lumbar spine showed nothing except a slightly bulging disc (L5 S1), but he was not concerned. He prescribed Cymbalta and then Gabapentin (though I did not take it for many months, because we agreed to try pelvic floor PT first, but I did end up taking it). He also ordered a nerve conduction test for my pudendal nerve (SSEP test). It came back normal (stimulated the tip of my penis).

The urologist ordered a full pelvic MRI to see what could be causing the numbness, but he didn’t find anything.

I began going to pelvic PT a few months later I received internal treatment primarily, which hurt a lot but was told it would reduce muscle tension that was probably compressing my nerve and aggravating it. I was skeptical of internal treatment because the problem had started internally. I modified my lifestyle to avoid lower body strain at all costs. I performed breathing exercises at home, meditated and massaged my perineum daily, but to no avail.

5 months after the injury I moved and was without treatment for the ensuing 2 months until I could get a new PT. My new PT was gentler, more externally-focused. We tried dry needling of my pectineus, bulbo and pelvic floor. At times I felt a little better in terms of my sex drive, but the numbness never subsided. I was able to get erections, but they were difficult and it wasn’t nearly as pleasurable.

I went to a new pain specialist who suggested that maybe I had a peripheral neuropathy and tried Levidopa Carpidopa and Iron. Those didn’t work so I stopped at his instruction. We then tried a pudendal nerve block with a steroidal injection. The block helped the pain subside momentarily (the pain was not constant anyway but often times bad when I sat down for long periods of time). The numbness of the nerve block was total numbness, unlike the numbness I was experiencing. However, the steroid never helped the problem.

I had another round of MRIs - lumbar, T spine, pelvic (I have now had 3 rounds) - only thing that showed was the L5 S1 slight herniation. I saw two more urologists, but they came to no conclusions. When I got my prostate exam, I could barely feel it. My testicular pain worsened the next summer, particularly with heavy lifting and heat.
2 years after the injury, I saw a pain management doctor who gave me botox, pudendal nerve pulsed radio frequency ablation, a ganglion impar block and platelet lysate injections. I was told that if results were to come, they would come in about 12 weeks. I noticed no changes. I entered into a romantic relationship and started using Cialis (only when I planned on having sex). It allowed me to have sex like normal, one time per session, although eventually pain kicked in and I would lose my erection. I resumed PT for a couple of sessions but didn’t find it helpful so I stopped.

A few months ago, I noticed another change in sensation. After a month of a pain wave, I masturbated a few times in the same week. All was ok, until a few days later when I awoke to find that the sensation in the top of my shaft was essentially gone. Now everything except for the head of my penis was dulled/numb. Morning erections became even less frequent. I went through a bad panic and wave of depression and anxiety. My scrotum and the base of my penis started to become insensitive to temperature. My testicles felt lighter, almost as if they aren't there when I am living moment to moment. I feel as if if someone hit me in the groin, it would hurt locally but not nearly as bad as it used to. I just feel less sensitive in general.

I went to the ER several times for discoloration. I was afraid of a neuropathy (similar to what diabetics go through) killing my tissues. They told me everything was fine. I had two full body neurological exams - unremarkable. I had a needle EMG of the pudendal nerve - normal. I have also had an MR Neurography test that I am awaiting the results of.

I hope this provides some context for anyone who may be experiencing something similar. The numbness and pain were my chief concerns, but now it has become the skin. I have no clue what causes this. All my labs are totally normal. My testosterone is normal. Derms said it isn't an allergic reaction or lichenification or eczema. There is almost nothing online to suggest what this would be. The pigmentation is not just on the surface layer, the deeper layers of skin are darker too. Again, any and all help is welcome. Thanks for reading such a long post.

[Violet M]

We then tried a pudendal nerve block with a steroidal injection. The block helped the pain subside momentarily (the pain was not constant anyway but often times bad when I sat down for long periods of time). The numbness of the nerve block was total numbness, unlike the numbness I was experiencing. However, the steroid never helped the problem.

Since the nerve block temporarily helped the pain subside, that is an indication of pudendal nerve involvement. Even a short period of pain relief is diagnostic. Whether or not there are other nerves involved as well, I don't know for sure.

Regarding the steroid, there are some major medical organizations that do not recommend steroid nerve blocks for the pudendal nerve anymore. You can read the details in this thread where I link to the article. viewtopic.php?t=11593
So the fact that the steroid didn't help doesn't really tell you much.

I can think of one person I know of with PN who had skin discoloration. It's not real common. I don't know if it could just be due to general inflammation of the small superficial capillaries and nerves innervating the skin, or if there could be a disturbance in blood flow in the pudendal blood vessels. The blood vessels run alongside the pudendal nerve and if the pudendal nerve is compressed/entrapped, the blood vessels can be too.

PAGD can be caused by pudendal nerve entrapment/compression. Over time, if you have a compression, it is possible for nerve damage to occur leading to numbness. It can be very difficult to deal with. I'm sorry you are going through these difficult symptoms.

Violet

[onlysams]

From everything you described, it really sounds like there could be a nerve issue that standard tests just aren’t picking up. Something like small fiber neuropathy or autonomic nerve dysfunction might explain both the numbness and the skin texture changes. These don’t always show up on regular EMG or MRI, so you might want to ask about a skin biopsy or autonomic function testing.

Also, the leathery/sticky skin makes me wonder if there’s a deeper imbalance in the skin’s microbiome or a subtle form of dermatitis that isn’t responding to moisturizers. You could try seeing a dermatologist with experience in chronic genital skin changes and ask if a biopsy or swab would help.

Even though you’ve done pelvic PT and injections, it might be worth seeing someone who can look at your whole-body nerve mechanics, like a neuro-orthopedic specialist or functional neurologist. There’s a chance the problem isn’t just local but connected to compression or dysfunction elsewhere in the chain

[tyler_29920]

Thank you both for your replies. I really appreciate your thoughts and advice. I have actually asked about a biopsy twice and both times the dermatologist told me that it wouldn't help determine anything. I am not convinced of that, but I also don't have medical experience. I have had blood testing that suggests that my issues are not systemic, but I'm wondering if anyone knows if small fiber neuropathy can be localized/have injurious origins rather than systemic ones? I think dermatitis is the best case scenario because in theory it can resolve itself with the right topical or just over time. When I have erections or my scrotum descends, the problem isn't as bad. The scrotum appears more red in that case, and the penis a little bit more normal colored. My dermatologist thought the skin was just abnormally wrinkled, but I don't think that's fully it. I am going to get a second opinion and see what another doctor thinks. But if either of you have more thoughts on this, I would be grateful for them!

[Violet M]

Hi Tyler,

I think it's wise to get a second opinion. It's exhausting to have to go to so many doctors but hopefully you will find one who will come up with the right diagnosis and treatment.

I'm sorry, I don't know the answer as to the cause of your problem, but with the numbness and skin discoloration you are experiencing it would make logical sense that there is a nerve problem. Since blood flow can be regulated by nerves (constricting the blood vessels) it seems like there could be a connection between the numbness and discoloration.

Violet