Urethral Herpes Treatment

[Penelopepie24]

Hello, I am a female who has been having UTI (burning/itching) symptoms non-stop since December 2023, that hasn’t responded to any treatment, so I’m now wondering if it may be related to my herpes diagnosis. Like, could there be herpes lesions inside the urethra that’s undetected or can’t be seen? If anyone has had this experience or knowledge in this area, please share. I’m seeing posts here and in google from mostly men experiencing this, but wonder if there are women as well. I’ll share my diagnosis, then explain my symptoms and what treatments I’ve tried.  Thanks in advance. 

I was diagnosed with genital herpes in 2021 after what I guess was my initial outbreak.  Since then, I’ve not had any outbreaks that I’m aware of, unless it’s happening in my urethra or other symptoms I don’t recognize. But at the time, I had intense vaginal itching and paper cut-like lesions.  I blamed the cuts on me scratching, treated it like a yeast infection and within a week it cleared up. About a month later at my annual check up, I mentioned it to my OB/GYN and to be safe she gave me a blood test. Never in a million years did I expect a positive result, considering that I’d been celibate, absolutely no sexual/intimate contact, for over a year. Prior to that, I was with the same person for 4yrs before ending the relationship. Seven months prior to meeting him, I retired from the military (2015), was tested for everything during my exit exam and was disease-free, so I must have gotten it from him. I have a restraining order against him (DV), so I can’t ask, but he’d lie about it anyway. 

By December 2023, I was in another relationship and we had been sexually active for a couple of months (I disclosed & we used protection), when I began burning while peeing and having an itchy feeling inside the urethra. I hadn’t had a UTI in over 20yrs, so this was odd for me and when I went to the doctor I didn’t have a UTI or anything else, but the symptoms remain. Over the past 10 months, my doctor has tested me for every infection/condition under the sun multiple times…..UTI, STDs, vaginitis, yeast, urethritis, cystitis, PID, painful bladder syndrome, etc., and everything always comes back negative. Yet, these  symptoms have persisted every single day non-stop. It hurts every single time I pee, but the itching comes and goes. Some periods are worse, which I now call flare-ups. During those times the burning is so Bo tense that I sometimes scream and tear up. I also pee more often and the itching is all day during flare-ups.  The only way to get relief from the itching is  vigorously inserting tissue in my vagina to try to scratch the urethra throughout the day. This then leads to bladder spasms, pelvic and nerve pain down my legs. It is pure hell!   

Despite the negative tests, my doctor has still tried to treat and relieve my symptoms with all kinds of antibiotics, antivirals (including Valacyclovir), pain meds, bladder meds, MRI, and even 6 weeks of bladder instillation treatments, but nothing has helped and still no diagnosis. Last week she gave me vaginal Valium, which has also done nothing.  After some research I came across one case study for a female patient that had herpes lesions in her urethra, which took her doctors a while to narrow down and attribute to her symptoms only because the lesion was visible enough hot at the urethral opening. I’m wondering if this could be my issue, but the lesions are further inside. And if so, why doesn’t the Valacyclovir clear it up?   I plan to ask my doctor about looking inside the urethra, but am curious if anyone here has this experience any of this and if so, what was the solution? 

Thank you so much for taking the time to read this. 

[mr_hopp]

@Penelopepie24 — I’m so sorry to hear you’re going through this—it sounds absolutely awful. Yes, herpes lesions *can* form inside the urethra, but it’s rare. If lesions are present internally, it’s possible they might not be visible or picked up in standard exams. The ongoing symptoms could potentially be tied to nerve irritation from the virus. It's great you’re considering asking your doctor to investigate further inside the urethra.

If Valacyclovir hasn’t worked, it could mean either the treatment duration wasn’t long enough or that the issue may not be herpes-related. Sometimes other conditions (like interstitial cystitis or nerve-related pain) can mimic herpes-like symptoms.

Keep pushing for answers, and maybe ask your doctor about exploring nerve involvement or a cystoscopy to check internally. You deserve relief!