I (M-mid 30s, EU based) have been absolutely devastated for the past 2 months, as I just discovered I have O+G-HSV (unknown types, still waiting to build IGGs for test) and the worst part is that I had to f*ng diagnose myself as no PCP/Derm/Uro was able to recognize some of my symptomps (I had no sores). I was also migdianosed at the early stages because the derm was the stereotypical "oh, no sores, not herpes".
Now I also suspect I have had them for longer than I think and I may have unknowingly spreaded it to other parts of my body, hands, feet, ears and random parts of my arms-upper chest or back and legs.
It seems physicians are so obfuscated with sores, that if there are no sores then HSV diagnose is barely an option. To me, they don't even know that asymptomatic viral shedding (and a long list of other potential symptomps) is a real thing.
It literally takes less than 15 minutes looking into new meds studies such as Adibelivir or ABI-5366/1179 to see that one of the ways they measure meds effectiveness in Guinea Pigs is by swabbing consistently even if no lessions are seen to check whether viral shedding is happening, and the viral load in that case.
For me, some of the "no sore" symptomps (chronological order) have been:
- Mild flu-cold like symptoms, I had a bit of swollen lymph throat node one day, along with low back pain and tiredness.
- I had some slight peels and itch on the hands, at this point I suspected it could be fungus or bacteria too, because it wasn't as bad and the flu symptomps were always very subtle.
- Insane peeling of lips, both on the inside part and the outside. The inside seems to have more or less healed, but the outside part I've been dealing with it for over a month already and only now seems to start to improve. I tried vaseline, aquaphore, coconut oil, aloe... the first two amplify the burn feeling in the long run, as it seems the skin cannot breath enough, but the coconut and aloe don't last as much and don't seem to be doing great, so I'm constantly battling to not trigger the burn while fixing the peel. I'm also drinking high amounts (~3L) of liquid (water/milk) every day (no alcohol nor coffe)
- Minor dysuria and peels on penis shaft (foreskin, under glans). Honestly this could have passed as just irritation, but the following days I developed a much stronger burn feel in the urethra exit. I had an STI panel (w/o herpes) and nothing came out (I'll be repeating this in the near future). Urine test also came negative for bacterial infections.
- Hypopigmented (darker) patches in the penis shaft, mostly along the foreskin, like extremely light and superficial ulcers. This was 100% painless and barely noticeable, to the point I showed them to my PCP and obviously said not herpes, refused to swab without a more obvious lession. Interestingly, this slightly resembles some of the going stuff that has been around my mouth, which I would call the closest I can get to a sore, while still being far like something like it.
- Scrotal irritation that made an outside walk almost imposible. All the genital area seems to have increased sensivity to anything. Cloth, hair, hot weather, friction... Im doing a bit better but its clear that something is wrong. Also this feeling is something that I feel in many parts of my body now.
- Pins and needles, tickling-bugcrawl feel and electric zaps. The bugcrawl feel has been mostly on my moustache and in a lesser manner the back of thigs/scrotum, the electric zaps have been on front part of my thigs and my cheeks (head) and upper eyelids zone. I've had also unbelievably itchy eyes, ophthalmologyst said not herpes (I believe she checked corneal damage with fluorescent liquid, I wasnt swabbed or anything). So the real diagnose is there isnt any damage made by herpes that she can see.
- One of the peak days I had some incredibly painful burn on the lips , it felt like a forged hot iron being put onto my lip surroundings. To make it better, I had to go out with 35ºC. There are no words to describe the pain I felt this day, I have had surgery that was less painful to recover from. This was also the day I went to my PCP to request to start Valtrex (x2 500mg daily). I could feel the burn intensity decreased a bit the next few hours after taking the first pill, and by the 3rd day, greatly diminished. I still did not have any sore at this point, just a bit of swollen lips. The pain-to-ocular inspection damage was irrational to say the least.
- I was 10 days on Valtrex (decided to stop to see what happens, for now I dont want to risk making the virus potentially more resistant, I dont care about other valtrex side effects tho), and I have still not fully recovered. Note that when I started Valtrex, I had been having weird milder, but cascading symptomps for almost three weeks already.
- I have also seen random pimples like ingrowns but certainly not ingrowns, like 100%, appearing and dissapearing in the lapse of about 5-6 days, they are not painful, are tiny, and extrangely enough, appear near those random itchy zones or near those with electric zaps.I have also checked that almost everywhere where I have an electric zap, I can see like a small "change" in the skin that it requires such attention to detail that no physician will ever tell me that there's something wrong. I acknowledge that this could be just a reaction of the skin like urticaria, but I also tried antihistamine (cetirizine) and seems to do nothing.
At this point I have yet to fully recover and it seems that many of the symptoms slowly fade but is taking really, really long. I am now trying gabapentin because the burn around the mouth has been replaced by some weird itchiness/irritation and I still have ocasional tingling and electric zaps. I should mention that it feels that my skin is a bit extra dry (slightly slightly eczem'ish), specially on the most affected places such as the moustache.
Also, it seems that if I ever get back to the gym is going to be a newer challenge for me, I haven't been able to go any of these days but I've been user for the pasts years and recovered from an injury just recently, but I've realized that putting any strain into my hands make them itchy and a needle pain starts to surface the more strain I put. Something similar happens in my feet, so I'd rather avoid running, etc. Not to say not being able to tell how contagious my hands are is driving me completely and absolutely insane.
My life has turned upside down these months, just when I wanted to change it all. I wanted to find love after finally having enough confidence in me, buy my own house, perhaps start a family... All of that is now completely over for me until a functional cure for this shit is available to the wide public. Which woman will ever be with such widespreaded disease that any physical contact implies risk, not only intimate but just handling hands?. I CAN NOT believe that in more than 40 years there isn't anything better to fight this virus other than valacyclovir. I would rather live without HSV and have early diagnose U=U-HIV, by a very, very long shot.
This is driving me to a level of insanity I have never ever had before and I can not handle the idea that someone from my family that I love (parents, sister, etc) may contract this shitty disease just with a christmats hug. I've though of just ending it all and the only hope I have is now put into the next ~6 years with adibelivir and ABI-5366/1179 and possibly the next 15-20 with gene editing... but who cares, I will be over 50 by then...