Still haven't been properly diagnosed. Losing my head, please help!

[ekaterina92]

Hi everybody, 

I'm a 45 yo female from France.

I'm writing because i still haven't received a proper diagnosis (it's been a year) and it's making me very depressed. I still don't know if I have HSV or not.

Here are the facts:

-November 2022 : "encounter" with a partner. No penetration nor oral sex. But he rubbed himself against my genitals.

- 12 days later : a pus-filled pimple appeared. It lasted 5 days (scabbing including). The next day, I felt UTI symptoms, a lesion appeared on my inner labia minora and I had intense pain/burning in the whole area + inside rectum. Lasted approx 1 month. Doctor couldn't confim it was HSV. But I was sure I had herpes. I was put on valaciclovir which didn't seem to help. I actually didn't notice any difference. Got tested (blood test) but I know it was too soon. Negative. 

-Then I had no symptoms until last August. I then began to have burning with no visible signs. Got tested for all STIs, did bacterial swabbing + ultrasounds. Nothing. The burning left on its own.

-Beginning of September : the lesion reappeared on my inner labia. Exact same spot. It looked more like a red pimple but it tingled and it was tender. Took valaciclovir for 4 days then got it swabbed (PCR) + blood test. Everything negative.

-last October, the burning and tingling resumed. I was unable to pee when my bladder was full. I took valaciclovir for a month. Didn't help. Got the area swabbed again, this time with no visible lesions but with severe "prodome-like" symptoms. Negative.

-Mid-November, the lesion reappeared while I was on valaciclovir (took it one month). Showed it to another obgyn who said it looks like herpes. As strange as it may seem I was actually relieved.  But the PCR came back negative.

-Last week, I did another blood test + PCR. Everything negative. But I feel intense pain in my vulva, even after the lesion has healed. It's burning and tingling and I'm helpless. I even feel it at night. It's constant and since October I may have had 2 days without symptoms. 

 

In all, I have seen multiple doctors in a year and taken multiple tests.

I have had 6 blood tests + 4 PCRs. I have never tested positive. Apart from that one time when I took valaciclovir for a month, I have never taken it constantly, just on and off. 10 days at the first outbreak then 5 days every 2 weeks each time I was seeing my boyfriend.

Ex partner whom I suspect gave it to me has never had any symptoms. He's also immunocompromised. When I told him about it, he took a blood test which came back positive for HSV1 and HSV2. I was devastated; But he retested twice later and received a negative diagnosis. 

This is killing me. It's got to the point where I'm actually hoping for a positive test result. Which sounds crazy right? Doctors don't know what I have. I have two MRIs scheduled. 

I'm very, very depressed. According to your knowledge of the virus, do you think it's likely I have HSV or not? I know you're not doctors but believe me you know more than some doctors.  

I need your help, please

Thank you

Laura

[montereypop]

Hi Laura

I'm very sorry to hear HSV is giving you such a hard time. Most people infected with the virus don't experience any symptoms, for others its merely an irritating skin condition, however, for some it can turn out to be a life changing condition. I can fully relate to your distress, I too belong to the latter group. 

Anyway, lets try and stay positive (pun not intended!) 

Obviously, seeking professional medical advice is much better than self-diagnosis, and I encourage you to try to get another swab or blood test done when having an outbreak and not taking antivirals. Have you ever tried to look up images of women experiencing similar conditions to you? Do their rashes and outbreaks match yours? It might be a fairly good indication if it is HSV or perhaps some other STI. 

Despite me knowing that I am HSV positive, and doctors confirming by looking at my outbreaks, I've never actually tested positive in a swab or blood test myself. 

My first blood test done roughly 5 years ago was probably too early since my initial outbreak which was why it might have shown negative.

I had a swab done about a year ago while taking daily antiviral medicine which also turned out as negative. The doctor said that the medicine might have caused the test result to show as a negative.

Either way, test results may be wrong, and they only matter to a certain extent. Even when they show up as positive, they only confirm a condition we already experience and have to learn to deal with in our future.

Don't beat yourself up about it. Wait until your next outbreak and try to get another test done without taking any antivirals. Have another doctor look at your sores/rashes if you can. 

In the meantime, look for the things that help you deal with reoccurring outbreaks. Focus on the things that are GOOD for you and that make you HAPPY.

IF there is one positive thing about getting HSV, then it is me learning to look after myself.

All the best to you!!

[ekaterina92]

Hi Montereypop,

Thank you so much for your reply and the explanations.

I know in my heart that I have HSV but so many things don't match: ex partner immunocompromised and asymptomatic, tests are negative, antiviral doesn't work on me...

I'm really losing my head. The only visible signs I've had are small, papercut lesions on both my labias minoras. I've never had the typical blisters. They're almost invisble to the naked eye. And yet the symptoms I have are unbearable and seem to worsen with time. I actually thought that it would get better with time. Can I expect some kind of improvement?

Yes I will follow your advice and get tested again in a few month's time without taking the antiviral. 

I was taking it on and off to protect my boyfriend and it's hard for me to imagine not being able to have sex with him due to the constant tingling and burning. I don't know how to manage that. 

Any ideas about how I can deal with the constant prodome-like symptoms?

I try to remain positive but it's hard. I don't even want to be around people anymore while I usually love socializing. 

Do you have a positive outlook to share?

Thank you

[mr_hopp]

Hey @ekaterina92,

First off, sending you so much strength and support. It sounds like you're going through a really tough time, and it's totally okay to feel overwhelmed and confused.

Your situation is indeed complex, and it's understandable why you're feeling lost. Not having clear signs of typical blisters and getting negative test results, despite your symptoms, can be really frustrating. Like @montereypop mentioned, sometimes the tests don't capture everything, especially if antivirals are in play or the timing isn't right.

About the small, papercut-like lesions and the constant symptoms you're experiencing – it's possible for herpes to manifest in less common ways, and symptoms can vary greatly from person to person. However, if antivirals aren't providing relief, it might be something else too. Definitely worth exploring with your doctor.

I know you're worried about not being able to be intimate with your boyfriend because of the symptoms. Communication is key here. Maybe try to find moments when you're feeling a bit better for intimacy, and explore other ways to be close that feel comfortable for both of you.

As for managing the constant prodrome-like symptoms, @montereypop's advice to focus on self-care is spot-on. Finding what makes you happy and keeps you relaxed can help manage stress, which can sometimes trigger or worsen symptoms. This could include things like yoga, meditation, or just doing stuff you love.

It's normal to feel like withdrawing socially when you're dealing with something this challenging. But try to remember, this situation isn't who you are. You're still the same wonderful person who loves socializing. Maybe start small, like catching up with a close friend, and gradually work your way back. Time really does heal, especially with the right outlook. Be patient with yourself and don't heap on expectations, and especially judgments. Healing from this emotionally can feel raw and difficult, but you will pull through. Life truly does move on.

Keep your chin up, Laura. You're doing your best in a tricky situation. Remember, this community is here for you, always ready to listen and support. 💖

Take care and keep us updated.

[montereypop]

12 hours ago, ekaterina92 said:

Hi Montereypop,

Thank you so much for your reply and the explanations.

I know in my heart that I have HSV but so many things don't match: ex partner immunocompromised and asymptomatic, tests are negative, antiviral doesn't work on me...

I'm really losing my head. The only visible signs I've had are small, papercut lesions on both my labias minoras. I've never had the typical blisters. They're almost invisble to the naked eye. And yet the symptoms I have are unbearable and seem to worsen with time. I actually thought that it would get better with time. Can I expect some kind of improvement?

Yes I will follow your advice and get tested again in a few month's time without taking the antiviral. 

I was taking it on and off to protect my boyfriend and it's hard for me to imagine not being able to have sex with him due to the constant tingling and burning. I don't know how to manage that. 

Any ideas about how I can deal with the constant prodome-like symptoms?

I try to remain positive but it's hard. I don't even want to be around people anymore while I usually love socializing. 

Do you have a positive outlook to share?

Thank you

As for your ex partner - HSV is a real mystery and I don't think anyone can say with certainty that a strong immune system will automatically mean that one is HSV asymptomatic or vice versa.

Just as an example; I know of one particular person who is HSV positive, though mostly asymptomatic with very occasional (once or twice a year) and mild outbreaks. However, this person struggles with tonsillitis and catching a cold whenever its flu season. On the flip side, I don't remember myself catching a cold since getting covid two years ago, yet I struggle with monthly HSV outbreaks that vary in severity. What I am trying to say is that our immune systems and the way they respond to virus infections is still a bit of a mystery.

You've mentioned that antivirals don't work for you. Whenever I take antivirals to treat episodic outbreaks, I tend to not achieve the best results either and usually I will experience an outbreak a month or so after with prodrome symptoms kicking in a week before. However, I've noticed that when I take antivirals (500mg valacyclovir) every day of the year, it drastically reduces the amount and severity of outbreaks. Speak with your doctor about the treatment options you have and try to find out what works best for you. 

I think it would be really good to have another doctor look at you next time you experience discomfort - most doctors will allow you to take a swab whenever you experience an outbreak. You can also try and document your symptoms (if you can see any) and show them to a doctor.  

Whatever it is you are struggling with, I am sure that you will learn to live with it and make the best out of life!

[ekaterina92]

Hi Adrial,

Thank you very much for your reply. It is indeed a tough situation. One I never expected would happen to me. Like all of us I guess.

So many things don't match and at the same time this virus is so tricky. The only sure way for me to have a proper diagnosis would be to take the Western Blot but I live in France so it's impossible.

I think I'm being very unlucky here. Atypical sores, negative tests, negative asymptomatic immunodepressed ex partner, antivirals not working for me.

I have seen many many doctors, all of whom tell me it's not HSV or they don't know. One dermatologist even showed me pictures from the internet and told me "this is what HSV looks like". 

I'm convinced that most doctors don't know anything about HSV. Or very little. 

I'm struggling with feelings of intense guilt. After my divorce, I met this man who pursued me for months. He made me feel special. But I said no to him repeatedly because I knew we were not meant for each other. One day, I said "ok but we don't have intercourse or anything.". Yet that's how I got herpes.

3 weeks earlier I had met the love of my live, not knowing he would become the love of my life. I thought he was nice but I was not attracted to him in anyway. He reached out to me a few months later and I suddenly realized I liked him a lot. But I had to disclose this time. And we've been in love ever since.

Since then I've been feeling that I have cheated on him (though we were not together) and beating myself up because I didn't love the man who gave me herpes. I just followed my instincts. I usually don't sleep around at all, have only had 3 men if my life. And yet I feel like I'm being punished for this one "encounter".

In the end, the ex partner and I are still friends and he's been extremely supportive. He considers himself negative and has unprotected sex with women (after testing for regular stis). 

With my boyfriend well, this is hard. We do use protection but since I'm having constant symptoms it's hard for me to know when I'm not shedding. Having sex with him is wonderful but I don't want to pass it on to him. He told me he's not afraid but knowing what I'm experiencing I really don't want him to experience this. I have even thought about leaving him but I can't. He's the most wonderful man I know.

[ekaterina92]

Hi Montereypop,

Thank you for your insights. Well, it's not really good news...But I understand. 

My ex partner has spoken to many doctors. All of them say that if I repeatedly test negative then I am negative. And he's also tested once positive and twice negative. Bad luck, again.

HIs GP told him "you're immunocompromised so if you had herpes you would see it everyday and you would even have had a stroke". 

In the end, there's no one we can really trust. 

I'm sad to hear that after 5 years you still have outbreaks every  month. How do you deal with them? Are you still taking the antivirals?

Dealing with symptoms every day is a constant reminder of having contracted it.

How long off the antivirals should I be before I test again? And if the tests come back negative again (blood + pcr) what should I think?

Is it possible to never develop antibodies? 

Thank you for your precious help

 

 

[Veteran]

Doesn’t seem to be herpes. I wouldn’t stress about it if tests come up negative. Menopause sores mimic herpes. Maybe look into that as the cause. Hope this helps. 

[ekaterina92]

Thank you so much. It surely helps. Could you please tell me what menopause sores look like?