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Cariad

Ocd or herpes??

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Cariad

Hello all,

I was with my partner for 9 months - he left me when my ocd about herpes and hiv became too severe. 

I first thought that I'd contracted genital herpes from him about a week after we started being intimate. We'd had all the std tests and they'd come back negative, so I was certain that we were 'safe'. Of course in the UK they don't test for herpes unless you have visible symptoms. He promised me that he'd never had any genital herpes symptoms but I realised that he could be one of the many who don't have obvious symptoms. He also told me about 6 months into our relationship that he had cold sores as a teenager but hadn't had any for 20 years so hadn't thought about mentioning it.

The first time I had all the symptoms except blisters. I went to the STD clinic where I was swabbed and it came back negative for herpes but positive for thrush. Every few weeks after that, I would get outbreaks of what I thought was thrush, but the swabs were coming back negative for thrush.

The second time I went to the STD clinic, I had symptoms and a papercut looking sore. The doctor wouldn't swab it as she told me it "wasn't herpes" and "don't worry". I've since read that herpes lesions can look like papercuts. It wasn't oozing or really hurting, it was just a bit sore and I noticed it as I was checking myself so much.

Since then, I've been to the STD clinic and GPs 14 times in total but they only swabbed 4 times - the first which came back negative for herpes but positive for thrush, the second came back negative for thrush but herpes wasn't tested for. The third came back inconclusive but was most likely an in-grown hair on my pubic area. The fourth came back negative, again for an in-grown hair on my groin. Only one swab was taken from my vulva, the other from my cervix and then two from my public hair region.

I've been told by the herpes.org.uk helpline that it's only swabbing that can give a conclusive answer - the other times were just visual exams and no lesions/spots/sores found. So they don't count??

I've just had a painful weekend of a very sore vulva - a bit of redness but no blisters. I've had another papercut since but that didn't really hurt and healed within two days.

The doctors including the STD clinic specialists have consistently told me that i don't have herpes, but I keep getting a sore vulva and vagina. It's not thrush, the timeline is consistent with herpes, I'm terrified and seriously depressed. I'm constantly phoning the herpes helpline and just want answers - if I have herpes, I just want to know so I can take meds for it. I'm constantly living on tenterhooks waiting for the next outbreak of whatever and it's ruined my relationship and giving me severe anxiety.

I'm so low and despondent and feel like my life is over. I can't think about anything else. It's feeding my ocd and making me ill. Please advise me on what I should do to get this sorted.

Thank you for your help xx

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Cariad
31 minutes ago, Little Star said:

Cariad, I’m guessing you are from Wales :heart:

Yes, I am. Are you too?

I'm on first name terms with many of the staff at the STD clinics in South Wales, the amount of times I've been!! ;-)

What do you think about what I've written? Should I go back for more testing/swabs when I get my next outbreak of whatever this is? I'm so confused and scared! Thanks xx

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hopeing

It doesn't sound like herpes to me so far, so I would try to relax about it unless you get more symptoms.

Papercuts are not herpes related, typically you will get papules, followed by blistering and sores.

In some cases it skips straight to sores, however these tend to resemble ulcers, or reddened tender skin not papercuts.

Maybe there is another medical explanation for your symptoms? Have you spoken to your GP about it ?

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Cariad

Hi hopeing,

Thanks so much for your response. Sometimes the skin is red and tender in the original spot that i was swabbed for at the top of my vulva but which came back negative for herpes but positive for thrush but I'm not having other typical thrush symptoms.

Your reassurance is really helpful, thank you.

I've seen numerous GPs - one of whom had GH herself for years and who only visually examined me. She referred me to a gynaecologist but then I received a letter stating that they'd cancelled the request as they felt it would be too detrimental to my mental health. 

I've got a new GP now as I've moved areas who knows about my ocd obsession with herpes and who has already examined my lady parts so I could ask for a new referral to a gynae or a dermatologist. 

Amusingly, more strangers have seen my privates in the past year than partners have in the past decade!! When I'm not crying, I laugh at that.

Even if it is herpes, it's not the end of the world, is it? Just a blip. I'm not going to be alone and unloved and rejected should i have this virus? 

Thanks xx  

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Little Star
28 minutes ago, Cariad said:

Yes, I am. Are you too?

I'm on first name terms with many of the staff at the STD clinics in South Wales, the amount of times I've been!! ;-)

What do you think about what I've written? Should I go back for more testing/swabs when I get my next outbreak of whatever this is? I'm so confused and scared! Thanks xx

Am I indeed from Wales ❤️

It’s difficult to say, all my tests came back negative but my GP told me if Aciclovir works then I must have herpes and that’s the diagnosis I was given. No explanation of the virus, what to do next or who to talk to. I found it difficult to get an appointment at the STD clinic when I had visible sores so it’s all been a bit rubbish really.

I’m really sorry I don’t know what to suggest but I really hope you will be ok. Please let me know if you ever want to chat and good luck Cariad xx. 

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Cariad

Lovely to hear from a fellow Welshie!! :-)

That sounds like an awful experience with your GP, Little Star. I'm really sorry that you had to go through that. I'm sorry to hear about your diagnosis as well.

If you can get to Bridgend, I really recommend the lady doctor at the Quarella Road sexual health clinic - her name escapes me now, but she saw me numerous times when I lived there and was AMAZING!! She's like a wonderful grandma with many years of experience and knowledge - and even gave me a hug when I was crying. 

Would love to chat, thanks for the offer. I hope we can offer each other support xx

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Little Star

Thanks for your message and no you won’t be alone, unloved and rejected. I have the most wonderful, loving and supporting partner who loves me just the way I am, herpes and all!

Sure I get days when I cry, obsses, post stupid comments on this forum and even wish I was dead but those days are few and far between. It’s normal to feel low, depressed and fed up, in moderation of course.

At least you have knowledge, I didn’t even know what genital herpes was until a couple of years ago, not a single person had explained to me what it was and like you catching an STD was my biggest fear. 

Please keep me updated on how you get on, sending you lots of cwtches xx.

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Cariad

Thanks, lovely. I'm so sorry to hear that you struggle, but I'm glad that you've got a supportive partner. 

Please never wish yourself dead - you're obviously a kind, caring person so you'd be a massive loss to this world. We have to remember that it's just a cold sore in an embarrassing place. Your loved ones would be devastated so please, please never hurt yourself. Life can be as painful as herpes sometimes but it's worth being alive for the good times.

Feel free to contact me any time that you feel low. You're not alone.

Sending you many cwtches back xx 

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GlitterDx

I don’t think you have herpes (or HIV) and you should settle down! You are ending relationships over worrying. You need to find peace with this... 

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Notthesame

Have u had any igg tests. Nhs can do one if you insist on it and tell them u understand they don't diagnose based on them i got one waiting on results this week 

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ExhaustedGirl1

Sorry about what you're going through :( I feel like I can relate on some levels. I agree you should push for the IgG blood tests to get more clarity.

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Bhbr2018

You could possibly end all the speculation with one simple test: igg test. Or the Western Blot. I have severe OCD and now that I have HSV1 you think it would be like: ok I have herpes, nothing to be afraid of anymore. But no. I’m terrified now of getting the other strain. Instead of worrying about disclosing to a man that I’m HSV1 positive, I’m terrified that he has HSV2 unknowingly and I don’t want to sleep with anyone. Ocd and herpes is like living in Hell. I understand you. I was complete freakishly ocd about getting or having herpes and here I am anyway. 

My ocd was put to rest (temporarily) after my diagnosis and blood test. Maybe that will help you. If your boyfriend has gone down on you even without an active sore there’s always asymptomatic shedding and can be passed on this way. Whether he’s had a cold sore in the past 20 years or 2 months, god people are so dumb. Good luck to you.

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Cariad

Thanks guys for your responses. I did ask about a blood test but was told that they're unreliable and wouldn't give me the answers I needed as I'd be questioning the results obsessively and getting re-tested numerous times due to the ocd anxiety.

I'm more scared of hsv2 than hsv1 due to the latter being more common, so probably less of an issue to potential future partners (??)

I just want a definitive answer - ocd isn't called the doubting disease for nothing - I'm putting myself through hell. I'm just trying to go with the worst-case scenario and accept it. My therapist has told me that I'm not to get tested anymore, that i have to live with the uncertainty and to mention to future partners that i don't know my hsv status, that i may have herpes but I don't know, then let them decide if they still want to continue the relationship or not based on the truth that i don't know.

I'm just trying to accept that I could have herpes and come to terms with that on my own. I'm not in a rush to get into a new relationship atm.

How did you guys learn to accept that you had herpes and carry on with life?  Does it get easier with time? 

Thanks xx

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Bhbr2018

Blood tests are accurate after enough time has passed to build antibodies. Western blot is 99% accurate. Doctors don’t want you to test for antibodies because they think a positive test result will be more psychologically harming than not knowing. That’s why. Most doctors really aren’t empathetic, especially when it comes to something non life threatening. If I were you I would take the igg and order the western blot. You can’t really put a price on peace of mind.

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Flexer
On 10/16/2018 at 6:11 PM, Cariad said:

Hello all,

I was with my partner for 9 months - he left me when my ocd about herpes and hiv became too severe. 

I first thought that I'd contracted genital herpes from him about a week after we started being intimate. We'd had all the std tests and they'd come back negative, so I was certain that we were 'safe'. Of course in the UK they don't test for herpes unless you have visible symptoms. He promised me that he'd never had any genital herpes symptoms but I realised that he could be one of the many who don't have obvious symptoms. He also told me about 6 months into our relationship that he had cold sores as a teenager but hadn't had any for 20 years so hadn't thought about mentioning it.

The first time I had all the symptoms except blisters. I went to the STD clinic where I was swabbed and it came back negative for herpes but positive for thrush. Every few weeks after that, I would get outbreaks of what I thought was thrush, but the swabs were coming back negative for thrush.

The second time I went to the STD clinic, I had symptoms and a papercut looking sore. The doctor wouldn't swab it as she told me it "wasn't herpes" and "don't worry". I've since read that herpes lesions can look like papercuts. It wasn't oozing or really hurting, it was just a bit sore and I noticed it as I was checking myself so much.

Since then, I've been to the STD clinic and GPs 14 times in total but they only swabbed 4 times - the first which came back negative for herpes but positive for thrush, the second came back negative for thrush but herpes wasn't tested for. The third came back inconclusive but was most likely an in-grown hair on my pubic area. The fourth came back negative, again for an in-grown hair on my groin. Only one swab was taken from my vulva, the other from my cervix and then two from my public hair region.

I've been told by the herpes.org.uk helpline that it's only swabbing that can give a conclusive answer - the other times were just visual exams and no lesions/spots/sores found. So they don't count??

I've just had a painful weekend of a very sore vulva - a bit of redness but no blisters. I've had another papercut since but that didn't really hurt and healed within two days.

The doctors including the STD clinic specialists have consistently told me that i don't have herpes, but I keep getting a sore vulva and vagina. It's not thrush, the timeline is consistent with herpes, I'm terrified and seriously depressed. I'm constantly phoning the herpes helpline and just want answers - if I have herpes, I just want to know so I can take meds for it. I'm constantly living on tenterhooks waiting for the next outbreak of whatever and it's ruined my relationship and giving me severe anxiety.

I'm so low and despondent and feel like my life is over. I can't think about anything else. It's feeding my ocd and making me ill. Please advise me on what I should do to get this sorted.

Thank you for your help xx

Do you ever get a tingling feeling around your butt legs or groin before getting the sores? Sounds like you do have herpes but could be a really mild condition and there have been many cases where tests come back negative for people. 

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Cariad
10 hours ago, Bhbr2018 said:

Blood tests are accurate after enough time has passed to build antibodies. Western blot is 99% accurate. Doctors don’t want you to test for antibodies because they think a positive test result will be more psychologically harming than not knowing. That’s why. Most doctors really aren’t empathetic, especially when it comes to something non life threatening. If I were you I would take the igg and order the western blot. You can’t really put a price on peace of mind.

I'm worried about the psychological effects should it come back positive, especially for hsv2. I'm unsure whether to have the test or not. I think I'm too scared to and it'll make my ocd worse. There's nothing I can do about it if I have been infected, but part of me really wants to know so that I could go on anti-viral meds.

But am I just blowing this out of all proportion? Should I just accept the possibility that i could have it and get on with life? Tell future partners that i don't know my hsv status and that I may have herpes?

Thinking about it makes me so anxious and depressed, I'm not sure whether knowing my status would be helpful as it wouldn't be able to predict future outbreaks. It's not hiv or anything life threatening. Should I just try and get over it? If so, how do I achieve acceptance? Thanks xx 

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Cariad
18 minutes ago, Flexer said:

Do you ever get a tingling feeling around your butt legs or groin before getting the sores? Sounds like you do have herpes but could be a really mild condition and there have been many cases where tests come back negative for people. 

No, no tingling feeling, I don't think. Although the left bottom hand side of my vulva feels more weird. I can't really describe it, I'm just aware of it, if that makes sense.  Apart from that, it's just soreness, which isn't agony but is uncomfortable.

I don't get visible sores from what i can see - and I've been looking!! The papercut sore I had came at a different time and I only noticed it when in the shower washing as the water stung it a bit. But sudocrem and vagisil sorted it out within 2 days. No scabs, it just disappeared.

Whenever I've been sore, except for the first time when I was diagnosed with thrush, there's been nothing to swab.

Is it possible to get herpes outbreaks with no sores where your vulva is sore for a couple of days and then goes back to normal after using vagisil, or should i be going to get swabbed at the doctors even though they keep telling me that there's nothing to swab after visual examinations? Should I insist on swabbing? Thanks xx

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Flexer
5 minutes ago, Cariad said:

No, no tingling feeling, I don't think. Although the left bottom hand side of my vulva feels more weird. I can't really describe it, I'm just aware of it, if that makes sense.  Apart from that, it's just soreness, which isn't agony but is uncomfortable.

I don't get visible sores from what i can see - and I've been looking!! The papercut sore I had came at a different time and I only noticed it when in the shower washing as the water stung it a bit. But sudocrem and vagisil sorted it out within 2 days. No scabs, it just disappeared.

Whenever I've been sore, except for the first time when I was diagnosed with thrush, there's been nothing to swab.

Is it possible to get herpes outbreaks with no sores where your vulva is sore for a couple of days and then goes back to normal after using vagisil, or should i be going to get swabbed at the doctors even though they keep telling me that there's nothing to swab after visual examinations? Should I insist on swabbing? Thanks xx

It is possible to have an OB without sores, I can't remember what herpes this is called but it's called something and it's where you get a rash instead of blisters! You should absolutely insist for a swabbing whilst having the rash!

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Whoknew?

I understand what you are going through. I have all the symptoms but several negative blood test, including a western blot and swabs. I would continue to try to get to the bottom of this. I think an accurate diagnosis would help you move on. I struggle with this daily because something is going on with me and no doctor can give me answers. It has gotten a bit better, but I’d give my left arm to feel like a normal person again. 

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Cariad
30 minutes ago, Flexer said:

It is possible to have an OB without sores, I can't remember what herpes this is called but it's called something and it's where you get a rash instead of blisters! You should absolutely insist for a swabbing whilst having the rash!

I don't get a rash, just soreness and sometimes I'm a bit red/inflamed-looking by my urethral opening. Like you get with thrush. But I was swabbed there and it came back negative for herpes... It's very frustrating, not knowing what's going on!! 

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Cariad
28 minutes ago, Whoknew? said:

I understand what you are going through. I have all the symptoms but several negative blood test, including a western blot and swabs. I would continue to try to get to the bottom of this. I think an accurate diagnosis would help you move on. I struggle with this daily because something is going on with me and no doctor can give me answers. It has gotten a bit better, but I’d give my left arm to feel like a normal person again. 

Thanks, hun. It's awful not knowing what's going on and your mind can go to some very dark places - I've been worrying about vulval/gynae cancers etc. I just want my old vagina back!! 

I've bought some l-lysine and am eating really healthily to boost my immune system. I do, however, exercise strenuously and am worried that this will exacerbate something but I can't give up my stress-buster so I'm just crossing my fingers that it won't result in any obs of whatever this is.

I'm scared of diagnosis- maybe not knowing my herpes status until/if I get a typical outbreak is the way forward. The uncertainty is driving me mad but what's the worst that can happen? A miserable couple of days every couple of months when I have a sore vulva and possible rejection from future partners? I've been rejected romantically for many different reasons so I can deal with that. A virus in my system that i can't control- I've had chicken pox and glandular fever, I've had an ob of genital warts when I was a student and never thought twice about it since, so what's the big deal about herpes??

I've got to start looking at this without catastrophising. It's just fuelling my anxiety and for what? In the grand scheme of things, it doesn't matter, does it??

I watched Without Limits: Australia last night - it'll be on BBC iplayer if anyone's interested. War veterans, one of whom had no legs and only 30% vision in one eye, trekking through the harshest bush. It was humbling and puts things in perspective re a possible cold sore which may or may not appear on my genitals. 

We need to take deep breaths and a step back from this and as long as it's nothing life-threatening, then just get on with this short and bumpy life that we've got. There could be far worse things to be diagnosed with. Ocd being one!! :-D ;-)

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Flexer
2 hours ago, Cariad said:

I don't get a rash, just soreness and sometimes I'm a bit red/inflamed-looking by my urethral opening. Like you get with thrush. But I was swabbed there and it came back negative for herpes... It's very frustrating, not knowing what's going on!! 

It really doesn't sound like you have Herpes!

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Bhbr2018

My ocd did not go away before and after I got diagnosed but I thank god that I was because I think it’s very important to know your hsv type. Like do you have what 70-80% of population has or do you have what 15-20% of population has? I think as long as you’re honest with disclosure you do whatever makes you feel best. 

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Cariad
15 hours ago, Flexer said:

It really doesn't sound like you have Herpes!

Thank you. That's very reassuring to hear xx

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