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?

[ekaterina92]

Hi everyone, Hi Adrial,

Just wanted to give you an update. 

After 4 months of being off the antivirals, I took a nother blood test...negative.

I guess I'm one of the unlucky people who don't develop antibodies.

On Sunday, I started noticing a fissure which looks like an anal fissure. I'm sure it's a herpes symptom. I had it swabbed on Monday and I'll receive the results next week. Showed it to my GP and he gave me treatment for an anl fissure.

I did something foolish though: on Sunday night, I put aloe vera gel on it, to alleviate the pain. It's not a thick cream, it's actually very light and if I try to put it on my hand and then put my hand under water for 2 seconds, then it's completely gone. BUT on Monday, before going to the lab, I took a shower that I assume that there would be no trace of aloe vera. Do you think it could influence the results?

Anyway, I'll let you know the results. 

I'm very, very depressed. Lots of shame and anger. I've been thinking about leaving my boyfriend. I love him so much and he loves me too. We're great together. But I can't expose him to this. He knows and accepts it but the guilt is too strong. I would never forgive myself. He deserves another woman who will not potentially harm him. 

Sometimes I hope I'm going to die soon. 

 

 

[mr_hopp]

Hey @ekaterina92

I'm really sorry you're going through it, and I get why you'd be so frustrated. It sounds exhausting to be in this limbo where you're not getting clear answers.

About the aloe vera affecting the swab test, if you washed it off well, it shouldn't interfere too much. Still, it's best not to put anything on the area right before a test.

As for the guilt with your boyfriend, remember that you're worth so much more than herpes. He clearly loves you and accepts you for who you are. It's tough, but don't let this condition define your relationship. Then you're just rejecting yourself when nobody else has. Take it one day at a time, and lean on each other for support. This is all part of the healing process, and it sounds like you have a great partner who is by your side with you. Don't throw that away; that's just the shame talking. And shame says some pretty icky shit. Try tuning into other perspectives, listen to other, more hopeful voices in your head. They're there. 

And we're here for you, and we're rooting for you.

Sending you lots of love and big hugs ... Keep us in the loop!

[ekaterina92]

@mr_hopp

Thank you so much. I needed to hear this.

Today I'm in a dark place but tomorrow is another day.

I tried putting aloe vera on the sore this morning and then showered it. In 2 seconds, without me even touching the area, the gel was gone. It's extremely liquid, like liquid soap. But yes I will be more careful next time, you are right.

Thank you for what you are saying about my boyfriend. He's the most wonderful man I've ever met. I've always been honest with him. But for some reason, I've put him on this pedestal where I'm the bad girl and he's the pure/good man. And I feel selfish. Like "If you want to be with me you have no choice but accept the risk". That's obviously not what I said but that's how I've internalized it. 

Now everytime we have sex I silently pray that he doesn't get it. Somehow I feel like I doesn't deserve to be with someone who doesn't share this condition. That he would be better off with someone who is HSV free.

How long did it take you to reach full acceptance?

I will let you know about the results. I have no doubt they will come back positive. And in a way it's good because I will know. Finally

Big hug!

 

[mr_hopp]

@ekaterina92 — I'm really glad my words helped. It's completely normal to feel this way sometimes, especially when you're in the middle of figuring out a diagnosis and trying to protect your boyfriend. But remember that you're worthy of love, just like anyone else. Your partner clearly cares for you and is choosing to be with you, knowing the risks. That sounds like the kind of love that's deeper than skin deep, a love of substance. 

The journey to acceptance isn't always quick or easy, but it happens over time. The key is to get your mind and perspective right so you don't keep throwing shame gas onto the fire. That is the way that time truly heals and you are able to accept the love and support that's being offered. Keep leaning on those who support you and keep finding things that help lift your spirits and focus you in on the good in your life. You don't need to be "perfect" to deserve love and joy. As Brene Brown says, there are gifts in imperfection. Because all of us are imperfect. All human. All growing. All learning. And that connects us all, whether we know it or not. 

Don't hesitate to reach out if you need more encouragement. We'll be here for you. And keep us posted on those results. And if you need one-on-one support, I'd love to support; I offer 35% off a first session. You can find out more here: https://www.herpesopportunity.com/lp/herpes-coaching

[ekaterina92]

@mr_hopp

Hi Adrial,

Thank you very much for your words of encouragement. Your forum is truy wonderful, thank you so much for everything you do.

The results for the swab test came back negative yesterday. Much to my surprise! 

I have taken 6 blood tests and 5 swabs so far (in more than a year). Everything negative.

Could it be the aloe vera? It is strange because it's like liquid soap. It's extremely liquid. I could have washed myself with it. Nothing to do with thick cream or else. I really think the water from the shower would have washed it off. And I remember the nurse told me "there is some pus, can I use a needle to pop it open"? That minute I was sure that this time I would receive a positive result. Especially because I have vaginal tingling at the same time as an anal fissure. 

Am I just being unlucky? Do you think I should do further testing? I understand testing can be flawed but 5 swabs tests???

Yesterday I saw a little patch of flacky skin on my boyfriend's penis. Not itchy, not painful at all. May just be some kind of dryness. But I went into panic mode. My boyfriend couldn't care less. He even said "I really don't care if I have it". 

I would love to have a 1:1 session with you one I test positive 🙂

Thank you once again

[Nylem]

Hello @ekaterina92

 You are the first person I have found yet that has a story similar to mine! I have been searching and searching. You are not alone. I too am suffering in a similar way and I my mental health fuel tank is low but hang in there! There is always a solution we just haven't found it yet. 

My story below. I am a male 46years age. 

It's been over a year since I have developed issues and I cannot obtain a solid diagnosis on my symptoms. My partner is GHSV2 positive and has been our entire three year relationship. We have had unprotected sex almost daily for three years.

We only found out about her status 1.5years ago when she had her first outbreak. That is when I also developed symptoms. It started with pain in abdomen and UTI type feelings, more frequent urination. I developed tiny lesions in my urethral tract and some were visible from the top. These were swabbed and PCR negative. Both of us took IGG serology and I was HSV2 negative, partner positive as expected and also she is confirmed by PCR swab. I was referred to a dermatologist but I did not go. We refrained from intercourse for a few weeks, the pain and feelings subsided.

Our relationship continued and so did the intercourse. To our surprise my symptoms returned not long after having sex again. This time they got worse. Small lesions on the outside now on the head of the penis. These are raised but did not pop. Intensely painful. I attempted to get a swap and PCR but the clinic said they are too small to even swab. We stopped intercourse and the pain subsided but further to our surprise the raised lesions remained. They stayed for months. 

More surprises. Each time we had sex the small raised lesions would 'reactivate' again and I would be in pain. This started to happen every time we had sex. Sometimes not so painful, other times so bad I could hardly walk. New lesions appeared sometimes. Always very small, always painful. 

This pattern has been going on for 1.5years. I have had around 5 separate IGG serology, all negative for HSV2. In February my partner had another outbreak. This time in a different place (it can happen) and only two tiny tiny lesions. Both her outbreaks were short. First one 2 days, this one in Feb around 24 hours. Call us crazy but we had unprotected intercourse while she was active. Within 14hrs I developed the same lesions. Yes, 14hrs! A few small and very painful ones on the shaft of the penis. We were unable to obtain a PCR swab as they were gone completely in 24hrs. Yes all very strange. 

I waited 2.5months and had another IGG serology. Negative!

As you can imagine this is taking a huge toll on our relationship and my mental health. Sex = pain and uncertainty as to if I am risking catching something I do not have or so I already have. As I am sitting here writing this, I have some adominal pain. The location of the pain used to move around always starting bladder/abdominal then moving to reactivated small spots or in the urethra. If I guessed, there are small lesions all through my bladder than reactivate on a new exposure. We started calling it 'dosing'. Each time we have sex I say I'm getting a new extra dose that will increase my pain and I can only take so many doses before I say we have to hold off on sex for a while. Haha it's funny thinking about it now. 

We had previously reached conclusion that I was in some bizarre way immune to HSV2 since I keep coming up negative. Like my body could fight it off even when it tried to infect me. Recently the theory has changed. It looks like HSV, feels like HSV and acts like HSV so it must be HSV. I now believe I more likely have it but I do not seroconvert. I cannot produce antibodies. 

Since I cannot produce antibodies I have limited protection from the virus. So the virus causes re-infection each time we have sex. My partner must to some extent shed small amount of virus and the variation in pain each time we do have sex relates to the amount of virus I receive. That of course if a completely uneducated estimation of what is going on. Medically I so far am told I do not have it. 

I have an appointment with two separate dermatologists in a months time and hopefully they can shed some light on this. I am yet to fully understand what is wrong with me.

 

[ekaterina92]

@Nylem

Hi there,

Boy, I feel your pain. Your story resonates so much with me. I completely sympathize.

I have also been told repeatedely that this is all my head and the doctors have no clue. 

Have you heard about the Western Blot? It's provided by the University of Washington. I guess you live in the US so it should be very easy for you to do it. I live in Europe so it's a lot harder.

I think you are the perfect candidate for it. You can contact Terri Warren to help you with it. 

On her website I disovered that tests don't detect 30% of hsv1 and 8% of hsv2. You and I could be the unlucky ones.

Some of your symptoms are unusual for herpes. Herpes bumps for instance don't last that long and you've said they haven't changed in months.

I suppose you've been tested for all other STIs. 

Keep me posted 🙂

[Nylem]

On 5/29/2024 at 9:49 PM, ekaterina92 said:

@Nylem

Hi there,

Boy, I feel your pain. Your story resonates so much with me. I completely sympathize.

I have also been told repeatedely that this is all my head and the doctors have no clue. 

Have you heard about the Western Blot? It's provided by the University of Washington. I guess you live in the US so it should be very easy for you to do it. I live in Europe so it's a lot harder.

I think you are the perfect candidate for it. You can contact Terri Warren to help you with it. 

On her website I disovered that tests don't detect 30% of hsv1 and 8% of hsv2. You and I could be the unlucky ones.

Some of your symptoms are unusual for herpes. Herpes bumps for instance don't last that long and you've said they haven't changed in months.

I suppose you've been tested for all other STIs. 

Keep me posted 🙂

 

Hi, I am in Australia and similar, the Western Blot is not available. My research on the Western Blot tells me it is looking for Antibodies. Specifically the proteins of antibodies. So this probably won't help me. 

In the interests of knowledge, I just took a full blood and urine screening for every known and detectable STI. I also took another IGG serology for separate HSV1 and HSV2

No STI's detected. 100% clean

Serology for HSV2 - Negative..... again

On the bumps not going away. Yes it's odd and something you wouldn't associate with Herpes, however it feels like Herpes. How do I know? I have HSV1 keratitis. That's confirmed and comes up on my serology (HSV1 pos). I know what the ulcer in the eyeball feels like and it's similar. I can't think of anything that would cause such acute pain. These bumps are small and can be intensely painful. There is one I have that was one of the originals. It has now almost completely gone. As I was saying that they 'reactivate' at times, well this one never did. To my surprise recently it has. Last week. Although almost no longer visible, it became sore and redness started to show and a red circle where it once was. It raised up again ever so slightly. All very very weird. 

You would think and hope that some of the best experts in the world on HSV would be scouring some of these forums to simply gather information and experiences from people. You would hope that they might stumble on threads like this one and provide some input on what is happening. 

I am at a point where I am considering searching the world for such people/experts/specialists and explaining to them my symptoms and consulting with them on what they think is going on. I doubt I'm going to get any answers any other way.  

 

[NerdP423]

@Nylem I am not a doctor, but the external symptoms you are describing sounds kind of like molloscum to me. 

But again, I am no doctor and don’t play one on TV.