Constant outbreaks 2 years on

[Spinster1978]

Desperate.... please help. I was diagnosed with HSV2 2 years ago. He didnt think to tell me he had it. I'm 42 just started dating, not had the chat yet that's not my issue. I take 3 tablets or Acyclovir a day and have done for a year. However I get outbreaks all the time. Itching, tingling, blisters,  aches, tingles the lot constantly. I'm in the uk the clinic do not seem to take it seriously. Its truely destroying me. How can I possibly have a sexual relationship? I feel disgusting. I was under the impression over time outbreaks were less frequent? This is having such a detrimental effect on my life. I cant cope. Is anyone else in the same boat and can help me. Is there somewhere I can be referred to for a specialist opinion as this isnt right, I want me body back. 

[Kjlo82]

Hi, 

I am in the same positions as you and feel exactly the same.  I was constantly getting prodrome symptoms even when on my medication which made me make the decision that I would stop taking it, which gave me an outbreak and probably the worst one since my first one.  I am also from the UK and I know exactly what you mean about the clinic staff.  Im on first name basis with some of them because I am constantly on the phone to them, trying to get on top of it but they don't seem to know much about the condition and gave me a lot of leaflets to read over but they have just given me more questions than answers, which they are unable to answer.  So I have found that I am by myself with this and I am trying to find ways to help myself, trial and error with vitamins and other things to help.  Im also trying to clean up with my diet and see if that helps.  Did the clinic give you the herpes.org leaflet?  Im sorry I probably haven't been much help here but do know that you're not in this alone.   

[Spinster1978]

Thank you so much for replying. Yes got loads of leaflets and told bot to worry about it? My constant prodomes and outbreaks are simply awful. I wouldn't tell any of my friends because of the shame. 

I know exactly who gave this life sentence to me. 

I called the charity Herpes.org I think that what it was called. I found the lady very condescending and again told not to worry about it. The thing is if you dont get symptoms than great, unlike us constantly battling. The herpes helpline charged me £8 for the phone call. Where is the help? This is for life and to me is a massive deal. Any other STI you take pills and it goes away. This is truely awful. My blisters are so painful. I have to tell my son I have a bad back as he sees I'm hurting. I'm 41 years old abd feel so stupid that I've got this. 

Are there no specialists in the uk that we can see? 

[Kjlo82]

They definitely seem to say not to worry a lot of the time.  My local clinic know that I am not going anywhere and I will keep going until I am satisfied, so they are trying to help me more now as I have been trying to get to the bottom of this for 6 years, 5 of which was just prodrome symptoms so there was no chance of finding out until I had an outbreak.  It's so difficult when you feel like you're not being taken seriously but I think most of that is because they don't know anything about it, I can remember going in with a list of questions and speaking to a nurse/healthcare assistant and being told I know more than she does when it comes to it, I think they just work with the symptoms and thats it, you're by yourself with the rest.  

It took me a long time to tell one of my friends, she was so understanding and had no judgement towards me and I am aiming to tell a few more because I feel that if I cant tell them how am I going to be able to tell someone I will date.  

£8 for a phone call thats awful, I cant believe that they were no help to you, what is the point of having a help line if they aren't going to be there to support you and recommend things to help you.  I believe that they have herpes support groups through the sex clinic but they are the type you go to and sit with people who have it, I live in a small city where people like to talk so thats out for me.  

I am the same i'm 38 years old and have this and feel like I should have known better and I hate the person that gave it to me, as he seems to be living his best life and I'm having this constant pain.  

Do you take any vitamins?  

Have you worked out your triggers? I've found that I cant drink gin, or eat a lot of sweet things (which i'm hating as I have a massive sweet tooth) and I can't drink more than one day a week.  This has helped me a little just need to give up sweet things.  

Have you been tested for BV or Thrush?  I have had BV a couple of times and it is just awful and makes it worse?  

I don't believe that there are any specialists but then again its not something that I have looked into. 

 

[Spinster1978]

Hey, so you've had symptoms for 6 years? I thought over time it improved and eventually you built up an immunity to the virus? 

I take acyclovir 3 times a day. It's just constant. 

I'm not sure I have a trigger mother nature just picks me to have this gross virus. I've tried various things lysine, daily aspirin, cant remember what the other medications was. Tea tree, high dose vit c. 

Our GUM clinic you have to sit and wait you cabt make an appointment which is inconvenient when you have children and work. 

Are you in a relationship? I've only had 1 relationship in 2 years he was fine in fact we are still friends. We used condoms and all was well. 

I've just started dating then Covid hit so I havent disclosed yet but will have too the next time i see him.

I honestly think I'd rather have anything but herpes I struggle with it constantly how can you not when its always there. 

There has to be more help in the UK surely. I'm in the South.

Yes the Herpes charity again not helpful, didnt see it as a problem. Obviously doesnt have outbreaks like we do.

Soul destroying. I'd love to hear from more people in the UK surely theres help. I'd pay privately for help.

 

Really thankful for your input x 

On 4/30/2020 at 9:23 PM, Kjlo82 said:

They definitely seem to say not to worry a lot of the time.  My local clinic know that I am not going anywhere and I will keep going until I am satisfied, so they are trying to help me more now as I have been trying to get to the bottom of this for 6 years, 5 of which was just prodrome symptoms so there was no chance of finding out until I had an outbreak.  It's so difficult when you feel like you're not being taken seriously but I think most of that is because they don't know anything about it, I can remember going in with a list of questions and speaking to a nurse/healthcare assistant and being told I know more than she does when it comes to it, I think they just work with the symptoms and thats it, you're by yourself with the rest.  

It took me a long time to tell one of my friends, she was so understanding and had no judgement towards me and I am aiming to tell a few more because I feel that if I cant tell them how am I going to be able to tell someone I will date.  

£8 for a phone call thats awful, I cant believe that they were no help to you, what is the point of having a help line if they aren't going to be there to support you and recommend things to help you.  I believe that they have herpes support groups through the sex clinic but they are the type you go to and sit with people who have it, I live in a small city where people like to talk so thats out for me.  

I am the same i'm 38 years old and have this and feel like I should have known better and I hate the person that gave it to me, as he seems to be living his best life and I'm having this constant pain.  

Do you take any vitamins?  

Have you worked out your triggers? I've found that I cant drink gin, or eat a lot of sweet things (which i'm hating as I have a massive sweet tooth) and I can't drink more than one day a week.  This has helped me a little just need to give up sweet things.  

Have you been tested for BV or Thrush?  I have had BV a couple of times and it is just awful and makes it worse?  

I don't believe that there are any specialists but then again its not something that I have looked into. 

 

 

[Kjlo82]

17 hours ago, Spinster1978 said:

Hey, so you've had symptoms for 6 years? I thought over time it improved and eventually you built up an immunity to the virus? 

I take acyclovir 3 times a day. It's just constant. 

I'm not sure I have a trigger mother nature just picks me to have this gross virus. I've tried various things lysine, daily aspirin, cant remember what the other medications was. Tea tree, high dose vit c. 

Our GUM clinic you have to sit and wait you cabt make an appointment which is inconvenient when you have children and work. 

Are you in a relationship? I've only had 1 relationship in 2 years he was fine in fact we are still friends. We used condoms and all was well. 

I've just started dating then Covid hit so I havent disclosed yet but will have too the next time i see him.

I honestly think I'd rather have anything but herpes I struggle with it constantly how can you not when its always there. 

There has to be more help in the UK surely. I'm in the South.

Yes the Herpes charity again not helpful, didnt see it as a problem. Obviously doesnt have outbreaks like we do.

Soul destroying. I'd love to hear from more people in the UK surely theres help. I'd pay privately for help.

 

Really thankful for your input x 

 

Hi, 

Ive had herpes for 6 years, 5 years were prodrome symptoms and I didn't know I actually had herpes until I had an outbreak last year, so for the past 6 years I have been to all sorts of different doctors to get to the bottom of it.  Its not the best condition to have but at least now I know what it is I can treat it and Im not putting people through what I went through which unfortunately I may have in the 5 years I didn't know.  I think my body dealt with it being hidden, so I had prodrome symptoms as and when I was stressed or other stuff but my body now has to deal with the actual sores so I have to do it all again.  

I am trying so hard to embrace this condition Im not happy that I have it but I have and I am dealing with it in the best way that I can.  I have recently started taking vitamins I now have a little collection going haha.  So I take vitamin c, a probiotic, vitamin d, magnesium and zinc and vitamin b12 as well as an antihistamine as well as aciclovir twice a day.  It doesn't feel as bad, its not waking me up as much as it used to.  Ive also found some pages on instagram and a podcast which is quite informative.  Ive been listening to positively positive on podcast.  I also follow her on instagram as well as safe slut, you, me and hsv is a UK based one and Samm from PP recommended some others to me which I have also started to follow, I wasn't going to as I was worried about people knowing that I was following these pages but if they find out they can ask me, when lockdown is over I will start telling people who matter to me some how.

Since I got a diagnosis, I haven't been in a relationship, I started one when I was in the process of finding out but I ended it before it could get physical because I was too scared to tell him, I never had luck with men before this, so I am scared about how it will be afterwards.  I am currently speaking to someone and I have no idea what I will do when we finally meet and I have to tell him but one good thing to come is that I am now managing to weed out men that just seem to be after sex.   

I have been searching for places to help but cant seem to find anything UK based but I am going to keep trying.  

x

 

[ash128083]

I’m in a similar boat. I’m. 35yr old femald from the US. We don’t get any help here either. Just “the suppressive meds will help”. Well what do you do when they don’y help? The more and more angry it on these different forums the more I see that the medications do not help, whether the pharmaceutical companies are making them different on this virus mutates, there are more and more people like us who are suffering with no help. And the doctors either don’t care to find a solution because this is an a deadly disease. I was diagnosed at 23 or 24. I believe I contracted this from my boyfriend at the time. Stupid me. All of my friends slept around but I was the one ti get this being in a relationship. First few years I’d get a typical sore that would eventually heal. After a year I went on suppressive meds. I had zero outbreaks zero symptoms for 8 years. I met a man who I fell in love with, we got married and had a child, and then all of a sudden 2 years ago I has the WORST outbreak of my life. I thought your body builds up immunity. What a lie. Since then the symptoms have been constant. I changed from acyclovir to valtrex and its helped a little. I take vitamins, exercise and sleep well. I do all the right things and yet I still suffer, mostly during my fertile week. To make it worse I never told my husband. I never had symptoms and there were a lot of things going on in our relationship that always kept me from bringing it up. Not that its an excuse. So now I suffer to myself, double my medication in an attempt to fight the virus, withdraw from my husband and kids, avoid sex...mentally I can’t take it anymore. I’ve kept this a secret for so long that I’m petrified of what his reaction will be. Sorry for venting. I hope and pray that things get better for you. That a new treatment comes out or something.