Constant symptoms? Will it ever get better?

[AE1994]

First of all - I'm so happy I found this forum with people in the same situation! I'm from a country with higher HSV prevalence than in the US but  stigma is still huge and there is literally zero support to get here.

I had the pleasure of contracting HSV nearly five months ago after having sex with condom ONE time with a guy who didn't tell me about his condition. It was my third sex partner ever, and as I have always been super careful (I've never even had sex without a condom) this came as a complete chock. I was really uneducated about it and thought I was completely safe from all STD's by using protection. So of all diseases out there, this was definitely one of the last ones I could see myself getting.

Needless to say I've been struggling a lot to deal with this mentally. However, I also STILL suffer every day physically. During these nearly five months since my first outbreak, I haven't experienced a single day without pain, itching, tingling and discomfort. I only got valtrex for 10 days for my first outbreak, but my doctor refuses to put me on daily suppressive therapy (here it's very difficult to get it prescribed) and have instead treated me for yeast infection and vaginitis which haven't had any effect at all. Has anyone else experienced similar symptoms over such a long time? I'm so sad about the whole thing and feel unable to move on to cope with it emotionally when I have constant symptoms. Will it ever get better?

/Sad and hopeless

[Blue1982]

Hey! 
I totally know how you feel. I always got tested for STIs and when they told me I’m negative for “everything” I always assumed a HSV test was involved...I never knew that you had to specifically ask to be tested for HSV. Needless to say I was in complete shock when I had my first outbreak 6 years into a faithful and committed relationship (didn’t know people could have HSV with no symptoms either). Anyways, that was in November 2019 and since then I’ve had daily prodome symptoms like aching, itching, pain, tingling with no outbreak since my last. It’s hard enough to have to mentally accept that I have HSV but also to be reminded of it randomly throughout the day with discomfort....I’ve read that it can take 6-12 months for your body to adjust to the virus so I am hoping that the symptoms will go away before a year....anyways you’re not alone. I guess some people get daily symptoms while others do not. I even asked my doctor about it and he had no clue what I could be talking about...I wish there was more education and information out there for doctors to help people who are learning about HSV. 

[AE1994]

Thank you so much for taking the time to reply! Just to know more people are going through this makes me feel a bit less lonely. I haven't told anyone except from the guy I contracted it from, it was a horrible conversation and we haven't talked since. Just haven't come to terms enough with the diagnosis yet to talk about it with anyone else.

And I've had the exact the same experience with doctors! Been seeing two different ones and they have not been very understanding nor provided me with any information about the disease. They didn't even test me properly, but diagnosed me based on a visual examination only and basicallly only told me "it's not dangerous". I really hope the daily symptoms will disappear eventually, because living with constant discomfort is really not fun and as I feel the virus is constantly active I can't really see myself dating again. Well, at least it's not deadly I guess. Hope your symptoms will go away soon!

[Blue1982]

Hey! You are definitely not alone. When I had my first (and only so far) outbreak, they did a visual exam and did an HSV2 swab and said it’s herpes, gave me a brochure and said “it’s very common” and then sent me home shocked and confused. The HSV2 swab came back negative (which leads me to believe it’s HSV1) and when I questioned the doctor about the swab being negative, he said that he’s 99% sure it’s herpes just based on visual. I asked him later why I’ve been having daily symptoms since the outbreak and he said “some people get those symptoms right before an outbreak” which didn’t help me at all because my symptoms are constant with no outbreak. Honestly, it was way worse in the beginning. It’s been almost 6 months now since my initial outbreak and the daily symptoms have lessened a lot which is a good sign to me. I’m still in shock mentally and have still not have sex since my first outbreak bc things don’t feel totally normal yet but I have faith it will get better. From what I’ve gathered...it seems like about 50% of people get daily symptoms for a bit after their first outbreak and some do not....really wish they had more knowledge about this virus in the medical community so that it was treated with more empathy and information. Giving a patient a brochure and saying “yep it’s herpes” doesn’t really help....anyways, I hope you start feeling better soon...keep up updated!!! 

[Kjlo82]

I was diagnosed with hsv 2 in August last year and I have also had daily symptoms.  It really gets me down and I have been on speed dial to my local clinic in the hope that they will help. I have to say I've been made to feel like I'm over reacting that was until my last appointment I went got a swab taken I had bv but most importantly I was listened to.  She gave me treatment for my bv, for my herpes but also advised me to take antihistamines which i have just started taking in the hope that they will help I am on day 4 and they seem to help ease them.  I hope that it is my body getting used to having it and will eventually feel better. 

[HopefulHerpy]

2 hours ago, Kjlo82 said:

I was diagnosed with hsv 2 in August last year and I have also had daily symptoms.  It really gets me down and I have been on speed dial to my local clinic in the hope that they will help. I have to say I've been made to feel like I'm over reacting that was until my last appointment I went got a swab taken I had bv but most importantly I was listened to.  She gave me treatment for my bv, for my herpes but also advised me to take antihistamines which i have just started taking in the hope that they will help I am on day 4 and they seem to help ease them.  I hope that it is my body getting used to having it and will eventually feel better. 

Do you know why she suggested taking antihistamines? Is to relieve the itching?

[Kjlo82]

Yes for the itching, I think to help ease it as it can be really bad at times.  

[Panickygirl21]

Sadly, I’m so happy to hear from other people going through the same thing. I’ve been experiencing the same symptoms since my first outbreak back in June 2019. I’m sad to admit that I had even contemplated suicide because nobody understood me. My family started telling me that the itching was all in my head. I even went to the ER a few months ago because the irritation got that bad. I’m seeing another Obgyn this week in hopes that they will actually listen. I really hope that things get better after the first year like someone mentioned because I feel like I’ve lost hope. I’ve tried different ointments but nothing really works. I’m just relieved to know that I’m not alone and that I wasn’t going crazy. Hope we can all get through this soon.

Did anyone else also suffer from anxiety before contracting hsv? I wonder if this is a factor in the daily symptoms.

[Blue1982]

I did suffer from anxiety prior to hsv but I know that these symptoms are not in my head.  Have you tried taking any vitamins? I just started taking vitamin C and have noticed symptoms have gone down a little. I’ve heard people have some luck with magnesium as well.....I’m really hoping within the next 6 months (that’ll make it a year since my first outbreak) that the daily symptoms will go away. It’s so strange how some people get daily symptoms and others do not. Even when I take valtrex daily, I still have the itching and tingling and pain.

[Panickygirl21]

Oh it’s definitely not just in our heads. I just wonder if the stress from anxiety makes it more aggressive and that’s why we get the daily symptoms. I’ve also been taking Valtrex daily but it hasn’t helped at all with the itching. My friend who is a PA follows a doctor who recommended seaweed extract. I’ve been taking seaweed capsules for three weeks now but nothing. I’m going to try an antihistamine like someone recommended in the thread and Vitamin C!  I really hope the symptoms go away on their own one day. I just want to feel normal again. I don’t even care about the sores anymore because those come and go not like the itching.

[Blue1982]

@Panickygirl21 @Kjlo82 @AE1994

Just checking in to see how everyone’s doing....seems like my nerve pain has spread to my right hip and lower abdomen....really hoping this dies down after a year!! 

[Kjlo82]

On 8/26/2020 at 2:49 AM, Blue1982 said:

@Panickygirl21 @Kjlo82 @AE1994

Just checking in to see how everyone’s doing....seems like my nerve pain has spread to my right hip and lower abdomen....really hoping this dies down after a year!! 

Sorry I have just seen this.  My prodrome symptoms aren't as constant as they once were but I still get them daily.  Im sorry to hear about your pain.  Have you been to the clinic?  Are you taking lysine, vitamins etc?  

[Jw31M]

I've had 4 outbreaks in tyr last 5 months so I understand your pain. They've been like clockwork the last several months I'll have an OB then a week of being then 3 or four weeks healed then another will pop up. Hopefully it will adjust and slow down over time.

[Blue1982]

Just wanted to circle back here to update: it’s been exactly 1 year since my first (and only so far) outbreak. 
my daily constant prodome symptoms have died down a lot!!! 

it used to hurt to walk for the first 6 months and then gradually it got better. 
now it’s like a mild irritation some days but nothing like it was before.

I think the more time that goes by, hopefully the better it will be! 

[Worriedgal89]

I have had this every day for 5 years including swelling and redness and raw spots in my vulva. Gyno diagnosed lichen but I have no white patches and steroids don't work.. my life is hell. 

[Panickygirl21]

@Worriedgal89 I’m sorry you’ve been going through that. I can understand your pain. I finally found a gynecologist that understood what I was going through and she gave me endless refills for lidocaine which I use a few times a week when the itching doesn’t subside. I’ve also been taking the valacyclvir daily and my psychiatrist prescribed me sertraline. I feel like taking those two helps a little with the daily symptoms. He said my anxiety definitely plays a part in my daily symptoms. Getting mental help and taking the meds has made a great difference. I see a therapist every week and she has really made a difference in my life. She told me last week that apple cider vinegar is supposed to be good for vaginal health? She said that she sometimes adds one cup of it to her bath. I haven’t tried it yet though. I really hope things get better for you one day and hope everyone else on this post is doing better too. Hang in there ladies.

[Worriedgal89]

Thank you so much for your response .. I think I have been holding onto the idea that this is lichen and am kinda in denial about it being the herpes causing these symptoms but I just need to accept it. I think I just worry why I am having constant symptoms . When I say constant I mean I maybe get one week of relief a month . It's insane.. I have talked to too specialists in the topic like Terri Warren and she says it's not likely what is causing my symptoms but I think she is wrong .. 

[kdogstew]

Well, I actually started a thread before reading this which is basically the same as this one.  I was diagnosed about 1 month ago and my right hamstring hurts me on a regular basis.  I am a competitive bicyclist and not used to being down like this.  It is very discouraging.  The discomfort for me is mild but constant.  I'm not sure if bicycling is making it worse or not.  I have some itching too but I guess not as bad as some.  It is very annoying and discouraging.  I guess I thought I would have the outbreak and then things would return to normal.   Well that didn't happen.  My ex wife was HSV II positive and I knew before marrying her.  We didn't stay married due to other circumstances and I was tested 2X to make sure I had never contracted.  Both of my IGG test were negative.  I have remarried and my wife is a great support.  I had never had an outbreak and had no reason to believe I had the condition.  The 1st Covid shot brought out my initial outbreak and boy did it suck big time. Very painful and lasted about 22 days.  From what I have read it just takes the body time to adjust.  I asked in my thread if cycling could cause more problems in my leg or if it is okay to train.    I'm pretty disheartened by it all.  I'm sorry you and others are experiencing pain.  

Is there a chat feature on this forum?  Sometimes I think that talking real time would help me deal with the bad nights and vent a little.  I don't know.  Maybe that is not a good thing either.  I guess I don't know much anymore.