hsv1 When I start to have confidence in my body, a tingle after sex always knocks me back

[BlondeEB]

Hi all,

This forum keeps me sane, thank you for all being so brave for posting stories, feelings and concerns!

This is my first proper post, so here goes... 

I have HSV1 genitally from an ex who gave it to me orally over 3.5 years ago. I had no idea this could happen. Anyways at the time it wasnt the worst thing in the world, I was actually pretty ok with it! It prob helped that the first 2 years I got very minor OBs every 6 months following the primary outbreak. We didnt use condoms and it wasn't ever on our minds because we were happy! Until then he randomly started drinking, locking me out and I found out he cheated on me, it was the strangest thing and I'll never understand. We then went through a horrible break up so I dont think this helped me with anxiety and stress... I was always so positive and optimistic until this time so anxiety was new to me and definitely overwhelmed me. 

Over the few months following this break up, the stress took its toll and I had regular outbreaks so i went to my hospital and got put on Acyclovir meds and took Lysine with advice from this site. (Thank you!)

During 4 months after this, (2.5 years after being diagnosed) I disclosed/dated with meds+condoms with two people, it didnt stop me dating as I had confidence, but they didn't work out... and THEN I met the most amazing guy and we have been together nearly a year! Living together and have our future plans set! (There is a love life with someone H- after herpes, believe me!! never been happier!) He doesnt judge what I have, he knows the risks when it comes to everything, and was there for me when I went to a therapist for 10 sessions to help me accept what happened to me and move forward with my life again! Which i have 🙂

((Side note, I found that after 6 months on Acyclovir just a couple of months into my new relationship that my hair was beginning to break, that I was becoming nauseous, achey and had strange prickly feelings in my legs and genitals. We decided together that I should stop the meds and instead use condoms.))

Anyways getting on to the main part of my post! Since then, in this 1 year period, I have only had 2 real OBs in this past year. The odd tingle but not true OB that I can physically see or usual OB cycle. We also agreed we want to be together long term and want to feel each other better so decided as I knew when I am on an OB and that I know my early sign symptoms we wouldn't use condoms (since about 5months ago). We have many very open honest conversations as much as I dont like talking about it (as I get embarassed) we know the risks, we know this means more likely transmission of 4% female to male, no meds or condoms etc. But he is happy to take that risk so we agreed to go ahead with nothing but me taking Lysine.

Since then...my question is... how can "I" stop myself worrying about it STILL after each time we have sex, when after everytime we have sex I feel that maybe maybe maybe I feel the odd tingle! The past few months of feeling super confident that yes no condoms no meds, i know myself, sex has also left me feeling super frustrated. When I do feel confident, and we have sex, that tingle down there always makes me worry after.. we go not having sex for 2 weeks because I say No we better not just incase if I do feel concerned, and as I say also confident I've only had 2 OBs in the last year. We try again and then I worry again. Ive started to lose trust in my body over the last month with every time we have sex. The reason why I am posting is because Im worrying again!

I guess its maybe my anxiety coming back playing with my mind that im not on meds or using condoms 😞 ?

I find myself looking through conversations on this site every now and again trying to find answers to what I know are probably impossible questions...

Does anyone else feel like this after sex? Anyone else not using condoms and meds with a H- partner? Has anyone had issues with Acyclovir like mine?

I feel like the only thing we can do is go back to meds to help us enjoy sex still without condoms and to give me that peace of mind. The past 3 years I have known how my body works when it comes to OBs and trust it, but its always at the back of my mind now the past month or so, plus my boyfriend has been absolutely fine after each encounter the past few months. So why am i doing this... I really hope its not just me that questions everything I do when making mutual decisions with an incredibly accepting H- partner.

Your thoughts, stories, etc are welcome please. It can't be just me struggling with my H- partner being so great and me still feeling concerned about his health/triple checking how I feel everytime.

Thank you x

[blurneworder]

What do you mean by hair breaking?

[BlondeEB]

Hi @blurneworder I found my thick hair was breaking with the meds and had other horrible symptoms. I have since found my hair has been better and not so dry and broken so know it was this!

[Michgirl73]

Yes I had issues with valtrex causing my hair to get extremely dry and thinner .. it can cause alopecia. I stopped taking it too because of that and it was causing me to get stuffy nose and headache. I was on it for about 3 months when the symptoms started causing me issues. I went off it my symptoms got better. I currently haven’t had sex since being diagnosed almost a year ago. I’m dating and scared when I do decide to if will cause me problems too! This virus sucks!! God how I wish I could change it.

[BlondeEB]

Ah @Michgirl73 I am so sorry you have had the same symptoms as me with meds, and also glad Im not alone in this too. I have to say I found confidence in myself after my anxiety issues and dating was actually ok! It was the fact I was honest to people after a few successful dates and left it to them to make the decision that made it 100x easier. For two of the guys out of the 3 I wrote them a letter and asked them to read whether they wanted to do it in my company or not, this helped massively because it was down to them to continue with me or not. The 1 I didn't do this and told them over the phone actually stopped contact a few weeks later and I recognised it was better to do it in person, so I would definitely suggest that with disclosing. Like i did, keep on with the condoms and knowing your early signs, and if you do meet someone see how it goes and make a decision together. I totally agree the virus sucks.. I wish there was a way to test / help check if you knew an OB was starting etc. Would make life so much easier and normal. Theres not a day that goes by that I dont worry. Keep strong! We can all get through this together 🙂

[Hereforalongtimnotagoodtim]

Hi there, I actually have a similar situation. In my case I have never used the medications long term. I had a conversation with my doctor about the possibility of doing that but she said that she would rather not prescribe it to someone who isn’t having constant painful outbreaks because there isn’t enough research yet that can tell us what the long term implications are of the drug. Anyways, I agreed to this, for me herpes has been whatever, I’d rather have an outbreak than a yeast infection or a bad cold. My partner and I don’t use condoms either. He knows the risks. I actually bring it up a lot and give him constant options to change his mind about that as well, just to remind him I would never be upset of offended if he wanted us to use condoms, but he still says no. But I would agree it causes me anxiety and I’ve had trouble sometimes enjoying myself because I can’t get it out of my mind (no one wants to pass H on to their partner). But really it’s up to the H- person if this really matters to them or not.  I still spend a lot of time worrying about it but I think as long as you keep the dialogue open about it then it’s ok. 

[Michgirl73]

1 hour ago, BlondeEB said:

Ah @Michgirl73 I am so sorry you have had the same symptoms as me with meds, and also glad Im not alone in this too. I have to say I found confidence in myself after my anxiety issues and dating was actually ok! It was the fact I was honest to people after a few successful dates and left it to them to make the decision that made it 100x easier. For two of the guys out of the 3 I wrote them a letter and asked them to read whether they wanted to do it in my company or not, this helped massively because it was down to them to continue with me or not. The 1 I didn't do this and told them over the phone actually stopped contact a few weeks later and I recognised it was better to do it in person, so I would definitely suggest that with disclosing. Like i did, keep on with the condoms and knowing your early signs, and if you do meet someone see how it goes and make a decision together. I totally agree the virus sucks.. I wish there was a way to test / help check if you knew an OB was starting etc. Would make life so much easier and normal. Theres not a day that goes by that I dont worry. Keep strong! We can all get through this together 🙂

Thank you! You brought me to tears almost!! I worry about being alone for the rest my life and u breath some hope into my life. I’m scared as hell to tell them when it’s time but I have to I know this and be brave even though it’s hardest thing I ever had to do. I thank god for this group and being able to see I’m not in this alone. 

[BlondeEB]

Hi @Hereforalongtimnotagoodtim! Its good to hear youre in a similar situation re. agreed with partner no use of condoms and thinking about long term meds and in constant fear still. I have accepted that I have it too, and def feel its more the fear of passing it to someone you love. I think we will always feel like that but we can only do our best right? Do you get any weird tingling after sex, or only just the worry after sex? It scares me everytime because I don't know if it is real or if it just irritation from sex messing with my nerves. The only way I know for sure if everything is ok is checking with my partner for a couple of days/week after and I can imagine this can get annoying asking if he's ok daily! I suppose if we keep going with what we are doing we can only trust that its been ok so far and I will start to get over it... Its prob different for everyone but, symptoms were pretty bad for me on long term meds and I was gutted about my hair and how it made me feel, so we agreed I will only use them now for bad outbreaks.I have a couple of packs at the ready whenever I need and this gives me a bit of control too. x

@Michgirl73 ah man I know exactly how you feel, please do not hold back from being with someone and getting into a relationship again. I thought the same after the break up with my ex, i felt like i had to lower my standards, because who would want to be with me??? but got straight back on the dating scene to not overthink it too much and to flirt and to have fun and try to feel good. Even if i made a friend out of it, better than feeling crappy. I went our with 3 diff people and disclosed to all 3! You know gut feeling when it is the right time to tell someone after a couple of dates. The amazing guy im with now when i gave him the letter actually told me straight away he had genital warts when he was younger and straight away it made me feel at ease! And we spoke about our experiences and how really its nothing to worry about at all...it happens. It may be the same with the guy youre dating that he has been in or is in a similar position. I will share with you what i wrote in the letter to my now amazing boyfriend (he actually kept his letter from me because it meant so much to us, in a strange way ha, so ill dig it out) and you can use parts of what i wrote if you ever wanted to disclose by letter 🙂 x

[Michgirl73]

2 hours ago, BlondeEB said:

Hi @Hereforalongtimnotagoodtim! Its good to hear youre in a similar situation re. agreed with partner no use of condoms and thinking about long term meds and in constant fear still. I have accepted that I have it too, and def feel its more the fear of passing it to someone you love. I think we will always feel like that but we can only do our best right? Do you get any weird tingling after sex, or only just the worry after sex? It scares me everytime because I don't know if it is real or if it just irritation from sex messing with my nerves. The only way I know for sure if everything is ok is checking with my partner for a couple of days/week after and I can imagine this can get annoying asking if he's ok daily! I suppose if we keep going with what we are doing we can only trust that its been ok so far and I will start to get over it... Its prob different for everyone but, symptoms were pretty bad for me on long term meds and I was gutted about my hair and how it made me feel, so we agreed I will only use them now for bad outbreaks.I have a couple of packs at the ready whenever I need and this gives me a bit of control too. x

@Michgirl73 ah man I know exactly how you feel, please do not hold back from being with someone and getting into a relationship again. I thought the same after the break up with my ex, i felt like i had to lower my standards, because who would want to be with me??? but got straight back on the dating scene to not overthink it too much and to flirt and to have fun and try to feel good. Even if i made a friend out of it, better than feeling crappy. I went our with 3 diff people and disclosed to all 3! You know gut feeling when it is the right time to tell someone after a couple of dates. The amazing guy im with now when i gave him the letter actually told me straight away he had genital warts when he was younger and straight away it made me feel at ease! And we spoke about our experiences and how really its nothing to worry about at all...it happens. It may be the same with the guy youre dating that he has been in or is in a similar position. I will share with you what i wrote in the letter to my now amazing boyfriend (he actually kept his letter from me because it meant so much to us, in a strange way ha, so ill dig it out) and you can use parts of what i wrote if you ever wanted to disclose by letter 🙂 x

Yes definitely I feel like I need to tell him to his face. Idk why but I just wanna be brave enough to do it. I’m getting the vibe from this guy he will take it well just by the way he treats and talks to me. 

[Hereforalongtimnotagoodtim]

4 hours ago, BlondeEB said:

Hi @Hereforalongtimnotagoodtim! Its good to hear youre in a similar situation re. agreed with partner no use of condoms and thinking about long term meds and in constant fear still. I have accepted that I have it too, and def feel its more the fear of passing it to someone you love. I think we will always feel like that but we can only do our best right? Do you get any weird tingling after sex, or only just the worry after sex? It scares me everytime because I don't know if it is real or if it just irritation from sex messing with my nerves. The only way I know for sure if everything is ok is checking with my partner for a couple of days/week after and I can imagine this can get annoying asking if he's ok daily! I suppose if we keep going with what we are doing we can only trust that its been ok so far and I will start to get over it... Its prob different for everyone but, symptoms were pretty bad for me on long term meds and I was gutted about my hair and how it made me feel, so we agreed I will only use them now for bad outbreaks.I have a couple of packs at the ready whenever I need and this gives me a bit of control too. x

@Michgirl73 ah man I know exactly how you feel, please do not hold back from being with someone and getting into a relationship again. I thought the same after the break up with my ex, i felt like i had to lower my standards, because who would want to be with me??? but got straight back on the dating scene to not overthink it too much and to flirt and to have fun and try to feel good. Even if i made a friend out of it, better than feeling crappy. I went our with 3 diff people and disclosed to all 3! You know gut feeling when it is the right time to tell someone after a couple of dates. The amazing guy im with now when i gave him the letter actually told me straight away he had genital warts when he was younger and straight away it made me feel at ease! And we spoke about our experiences and how really its nothing to worry about at all...it happens. It may be the same with the guy youre dating that he has been in or is in a similar position. I will share with you what i wrote in the letter to my now amazing boyfriend (he actually kept his letter from me because it meant so much to us, in a strange way ha, so ill dig it out) and you can use parts of what i wrote if you ever wanted to disclose by letter 🙂 x

I can’t say that I’ve felt any tingling but I will say that I feel extremely hyper vigilant of every twitch, and every itch and I constantly wonder (is this because of H)? I have had some weird sensations, a few times I had a feeling on sections of my leg skin that felt like I was sunburned. I brought this up to my doctor though and she said it’s more likely from lower back issues. Sometimes it can help to discuss these things with a doctor but I understand that it might not feel helpful for everyone because it seems as though there’s so much we don’t know about this disease, including medical professionals...

[blurneworder]

11 hours ago, BlondeEB said:

Hi @Hereforalongtimnotagoodtim! Its good to hear youre in a similar situation re. agreed with partner no use of condoms and thinking about long term meds and in constant fear still. I have accepted that I have it too, and def feel its more the fear of passing it to someone you love. I think we will always feel like that but we can only do our best right? Do you get any weird tingling after sex, or only just the worry after sex? It scares me everytime because I don't know if it is real or if it just irritation from sex messing with my nerves. The only way I know for sure if everything is ok is checking with my partner for a couple of days/week after and I can imagine this can get annoying asking if he's ok daily! I suppose if we keep going with what we are doing we can only trust that its been ok so far and I will start to get over it... Its prob different for everyone but, symptoms were pretty bad for me on long term meds and I was gutted about my hair and how it made me feel, so we agreed I will only use them now for bad outbreaks.I have a couple of packs at the ready whenever I need and this gives me a bit of control too. x

 

I've not had sex since my proper diagnosis in March, but back when I thought I had HSV (but not testing positive)  sex would bring out a ton of redness on my thighs and above my penis. This would be accompanied by rashes that itched. My scrotum also itched and turned red.