Urethral pain for over 17 months after possible HSV-1 infection

Apologies for the long post, but it's been a long journey without an end in sight...

I've been suffering with pain in the tip of my penis (just inside the urethra) for around 17 months now. It started when I had a rash on my penis, which later included some minor red dot-like sores (head and foreskin [i'm uncircumcised]). I wasn't sexually active at the time, but around the same time I did get a cold sore near my mouth for the first time in my life. My GP initially thought it was Balanitis and prescribed an anti-fungal antibiotic Fluconazole, but it had no positive affect after a week. He then prescribed Valaciclovir, but again it had no affect after a week. A basic swab was done for HSV, but it came back negative. I was eventually referred to a dermatologist who suggested the skin on the penis head was overly sensitive and gave me some basic skin health cream to apply. I also changed my soap, washing power and fabric softener to sensitive skin equivalents. After a few days, the rash and sores disappeared, however, a pain in the penis tip has never gone away.

The pain is just inside the urethra (about 1.5cm), and seems to be around the point the urethra starts to narrow. It's just a bit too far in to see by general visual inspection, but still close to the tip. The pain is triggered by pressure, and is hypersensitive. The slightest touch causes a burning/cut like feeling. Masturbation and any sexual activity that creates pressure on the head is painful, and so is ejaculation. Although the pain is not always acute without pressure, there's continually a dullness in the area, and I can feel it while urinating (although generally not really painful, but the higher the pressure of the urination, the more I can feel the area). If I get soap into the urethra, it's very painful. I now mainly wash with water only on the penis head.

6 months ago I saw a urologist who did a cystoscopy. He found no obvious issues after completing it, although he seemed more focused on looking for issues in the bladder, and not the urethra opening I was trying to explain was the main problem. But he said he didn't see anything obvious when I reiterated my questions after the procedure. I also did blood work to test for all kinds of STDs, and all of them came back negative except for HSV Type-1. This was found to be in my system, but was not active. The urologist suggested maybe it was nerve-related, but didn't offer any other solutions, so I saw a second urologist. She too wasn't sure what the problem was, but also did a basic prostate check, and it didn't seem to make the problem worse. Based on the initial urologist's feedback, we tried something for neuropathic-pain called Carbamazepine, to see if it would help. After just 2 days a red-spot appeared near the opening of the penis, and the pain in the urethra seemed worse. My urine was also cloudy and had a bad smell. Reading up on Carbamazepine, it looks like it can re-activate HSV if you have it due to its interactions with the nervous system.

I therefore believe that the cause of this problem is actually HSV-1, as just before the initial rash started, I had a cold sore near my mouth (I think I received it just from a kiss hello from a co-worker). It would mean I re-infected myself through touch or perhaps saliva during masturbation while the virus was initially active (which seems incredibly unlucky, but the most plausible answer).

However, even though there's been months with no visual rash or sores, the pain has never subsided. I saw my GP 2 weeks ago, and he suggested prophylaxis approach to HSV to see if the virus is continually reactivating (although HSV1 generally doesn't re-activate as much as HSV2, from what I understand). He gave me a month supply of Valaciclovir to take 1x 500mg tablet daily for 30 days. He also gave me Doxycycline to see if it's a chronic UTI (although urine tests always come back negative for bacteria, and I do not have a continuous urge to urinate, which is usually associated with UTI), which I'm taking twice daily. I'm on day 14 of the Valaciclovir, and day 8 of the Doxycycline, but there's been absolutely no change in the pain.

So I'm trying to see if there's something that could have been missed, or could be suggested to my GP to try, because I'm running out of options and feeling terribly depressed by the situation, since I can't do any kind of sexual activity without pain, and just bumping or wearing tight cloths can cause bouts of pain. My only next option seems to be seeing a neurologist. However, I'm just unsure that's the answer, since I don't seem to have any other symptoms of neuropathic pain in the pelvic area like Pudendal Neuralgia, and I'm otherwise healthy. The problem also started with the rash and sores and from what I've read, even though HSV lives in and around the nerves, it shouldn't cause nerve damage, unless it's a some kind of byproduct of the initial infection.

Has anyone suffered a similar issue after being infected by HSV? What can I do to try restore a normal lifestyle again? I appreciate any feedback.

0 likes, 1 reply