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Persistent symptoms, no answers

38 year old male. I have persistent symptoms that don't seem definitive, and doctors have all given up. Am having a hard time with anxiety, waiting months and months to get tested.

Previously tested negative for HIV and HSV-2 (oral HSV-1 +), about 7 months after last possible exposure.

April, went to girlfriend in Japan, had unprotected vaginal sex. A 4-day trip. I've seen her 2 previous times (a week or so each), over the last year. We've had mostly protected sex, but slipped now and then, and especially this last time. I noticed (too late) that she had some kind of "pimple" on her upper thigh, about 2 inches from vagina. Was a single bump with no redness, as far as I could see.

I do not know her STD status. She claims not to have anything, but as far as I can tell has never really been tested, and says ambiguous/contradictory things.

On the last day of the trip (day 4), I had some testicle pain, mostly on the left side. It was mild, and I mainly noticed it when walking down stairs.

The pain lasted about 4-5 days, then I had some general groin itching and discomfort for the next month. No rash that I could see. I started to worry about STDs, specifically Herpes (because of her bump), but also HPV and even HIV.

I had external hemorrhoid surgery about a week after I got back. I mentioned the itching and discomfort, but the surgeon said everything looked normal. At the 2 week followup he also said I looked normal.

I seemed to recover fine from the surgery, but I've never felt "normal" since the last day of my trip, just over 8 weeks ago.

Late May: one month out, I had more pronounced discomfort, including hypersensitivity of the penis, especially the head (e.g., very conscious of movement when walking) and some burning. The burning was mild, but constant, and did not seem to get worse during urination or ejaculation. No discharge that I could see.

At this point my worries escalated. I couldn't see a doctor right away, so they gave me Zithromax (1g) and Valtrex. Burning went away instantly (this symptom lasted about 4-5 days total).

Also went to an STD clinic, and tested negative for Chlamydia, Gonorrhea, and Syphilis.

By the time I got to see a urologist, symptoms were nearly gone, though never entirely. Always had hypersensitivity, discomfort, occasional itching. I ended up going to two urologists. One said my prostate was "a little soft" on one side, but he didn't see any urethritis (no visible bacteria in the urine). The other said my DRE was normal, and didn't think it was bacterial either. Neither found any lumps or other abnormalities.

Over the last few days, I've had increasing testicle discomfort, to the point of taking analgesics for it, and some more hypersensitivity. There is no obvious swelling or rash.

I plan to retest for HSV and HIV, but have to wait 2 more months! Could diffuse testicle pain be viral? I'm BEGGING her to test for HIV/HSV/HPV, but she can't or won't.

What could this be??
4 Responses
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Avatar universal
I can walk in and get an HIV test in 5 minutes (literally -- a finger ***** and 5-minute wait).

I'm almost at 10 weeks now (11 if you count from the beginning of the exposure). I am retesting for everything at 11/12 weeks for sure (1st week of July), and again at 16 weeks. If negative then, maybe I'll start to relax.

I'm not overly concerned about HIV -- much more worried about Herpes/HPV. The AIDS people say check at 3 and 6 months, so I'll go back and test for everything yet again at 24 weeks.

I did go to a clinic today to check out a tiny bump. I'm sure I would not have noticed this if I hadn't been looking so hard because of the Herpes scare. It was so tiny I was afraid they'd laugh at me for showing it to them.

They were very professional, and didn't laugh :-) They thought at first it might have fluid, then that it might be a wart. In the end they decided (after consultation with the senior guy there) that it was "probably nothing" (i.e., a harmless pimple or papule; they were able to "stretch it out" without feeling a hard bump [wart] or it popping [vesicle]). They said occasionaly pimple-like things are normal, but they expect it to go away, and said come back in a couple weeks if it doesn't.
So there's a nice concrete focus for my anxiety...

They looked at another area I thought had changed color/stretched out and likewise pronounced it "nothing".

They also said it looked like I had folliculitis of the groin, which could explain some of the symptoms, particularly the "heat" and itching. He said it looked like I was getting over a fungal infection, and asked if I'd recently had a rash. I didn't think so; I was pretty obsessively checking in the first couple weeks (mirrors were involved), and I often checked for a rash when I felt the itching get worse, but never saw anything.

Can't help but think I might have missed the rash, or it was so mild I didn't notice it. It's possible I have what would have been asymptomatic Herpes, and the actual symptoms were from something else (like something fungal).

Well, if I do have Herpes, at least it's looking like a mild case. In any case it's hard to maintain a high level of anxiety for weeks at a time (especially with so much "normal" stress going on in other life areas), and I'm acclimating to it. Sleeping at night is really helping. If I am eventually diagnosed, it will be almost anticlimactic. I hope I don't have *both* HSV and HPV; I've been reading on HPP about lots of people in that camp...
Helpful - 0
Avatar universal
Why wont they let you do a HIV test?  Waiting 3 months is the "window period" but you can always test earlier.  Why wait 3 months when you want answers now?  HSV it is too early but the doctor says OVER and OVER again that HIV testing at 8 weeks is very conclusive....not a lock but conclusive.  I am not sure where you are but most areas in the US have anonymous clinics that will test you.  Good luck and I feel your "pain".  Very simular experience.
Helpful - 0
Avatar universal
Thanks for your perspective. Things seem milder today, and symptoms come and go over hours; I think that sort of variability also supports the anxiety hypothesis.

I'm "treating" this as psychiatric for now: I'm exercising, eating right, and generally trying to ignore it and get on with life, plus taking a bit of Klonapin at night to make sure I sleep.
Helpful - 0
239123 tn?1267647614
MEDICAL PROFESSIONAL
I don't mean to seem insensitive, but what do you expect that an online provider, who can't examine you, can possibly do when there are "...persistent symptoms that don't seem definitive, and doctors have all given up"?  Especially when it's not just 1 or 2, but apparently 3 (4? 5?) doctors?

Your symptoms do not suggest any known STD.  They are entirely consistent with anxiety, but not much else.  Or simply unexplained pain.  Here is an exerpt from reply to another question, not unlike yours:

"It is a fact of life that human beings get various aches and pains. Out of the blue there is knee pain, a headache, abdominal discomfort, a stich in the side, tingling down a leg. Sometimes such problems are continuing or recurrent, yet no specific cause ever is found and clearly no important infection or disease is present.

Why should the genital area be any different? Not every symptom means disease. People with such symptoms of course should see a health care provider. But when a comprehensive evaluation comes up with no good explanation for genital symptoms, and if they persist after treatment of the potential infectious causes, it is wrong to assume a serious health problem. Just as some people have to learn to live with unexplained but benign headaches or abdominal pain, others have to live with unexplained genital symptoms.

Our genitals have a special place in our psyches, and unexplained discomfort can be harder to ignore than a painful joint or even a headache. But the principle holds. It's fine to look for harmless things that might help control symptoms. But potentially harmful treatments (e.g., repeated high doses of antibiotics, potent pain controllers) make no sense, and doctor-shopping (or internet shopping) for different answers generally is fruitless."

You can be certain you have nothing that will seriously affect your health or that of a sex partner.  You'll probably just have to live with the symptoms. In any case, follow your providers' advice.

Good luck--  HHH, MD
Helpful - 0

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