Newly diagnosed, some questions about suppressive therapy

[Leanne27]

Appreciate your thoughts. I’m in the newly diagnosed vortex where I oscillate between everything will be OK to my life is ending! I was diagnosed with genital HSV1 a week ago, my OB lasted around 2 to 3 weeks before finally disappearing. It presented like a UTI, burning stinging pain that went away after a few days when I took antibiotics and a thrush treatment, it then reappeared a week later but with 3 lesions on my outer labia and a few sores at the opening. I believe it was an initial OB rather than recurrence, my blood tests were negative.

 

I’m now way too hyper vigilant, I am totally focused on my physical feelings wondering if I am going to have an outbreak. I am poking around and looking too much and probably causing irritation too. I don’t have any noticeable lesions anywhere but do have a generalized irritation and burning feeling when I think about it adn particularly if I'm sitting! If I’m distracted I don’t notice it. I imagine all sorts of worst case scenarios, including being someone who will defy the science and develop lesions over the entirety of my body, silly I know but I did get it in my finger too so that allows the imagination to go into overload.

 

Do recurrences usually appear in the same place? Or will I find them appearing elsewhere?

 

Can I auto spread if I am poking around and happen to be poking a lesion?

 

I am wondering if psychologically I am better off to go onto suppressive therapy for the next 6 months or so that I can get my head more at ease? I know physically it is probably better to wait to see if I do get recurrences and not take medications unnecessarily. I guess I will probably relax into the whole thing but right now it’s tough. I really want this to fade away and not be so prominent in my thoughts. If I were to go onto suppressive therapy what sort of drug and dosage would be best for me? I did take Valtrex for 5 days but it was right at the end of my OB so not sure what impact it had.

 

I think these forums are great, it’s been really reassuring reading everyone’s stories and advice and to see myself reflected in many of the words, nice to know you’re not the only one feeling that way.

 

[kiwiguy]

@Leanne27

I can only comment on the suppressive therapy for you, others I'm sure will assist on your other queries, having been on suppressive therapy myself now for in excess of twelve years I would recommend to anyone to trail this for a while for your own peace of mind and to give yourself a chance to work out what is best for you. Managing H will come to you over time and as much as it is a "psychological trauma" at the moment, over time you will deal with it and live a happy and normal life, so I say yes to suppressive therapy (I take 400 mg acyclovir daily) the ob's for me now are less than once a year (after 20 yrs) and I feel as there a nil side effects currently, this works for me. I hope this helps you. ;)

[LittleStar]

Hi @Leanne27

 

You're not alone in how you're feeling. I was diagnosed 7 weeks ago and still oscillate with those same feelings although it is getting (slowly) better.

 

I have had a similar experience to yours in that I constantly think I am irritated/burning/itching however haven't had any bumps since my first OB. Yesterday I went to the gym (as I do ~3 x per week) and afterwards I noticed redness down below in the area where my bits would rub during activity. So I immediately started to panic thinking this was another OB. 'Poking around' as you mentioned probably hasn't helped the irritation! It's still there this morning although much less noticeable so I am not sure whether to attribute it to the friction or to a potential minor OB.

 

I guess I am still very much learning about how my own body will react.

 

Psychologically I think you might benefit from taking anti-virals for the initial few months-I have considered doing the same when I get myself in to a tizz thinking I'm about to break out. But I haven't done that as of yet. I am debating much like you are whether I should.

 

To be honest, I think it's completely normal for it to be at the forefront of our minds when we are first diagnosed and in time it will become something we think about less and less.

 

My advice would be to do what you think is best for you mentally and emotionally, taking the pills doesn't do any harm from all the evidence I've gathered and therefore wouldn't have a detrimental affect on your body.

 

In the meantime, keep doing what you're doing and know that you're not in this alone (if you want someone to talk to I am making myself available :))

 

The more experienced amongst us may be able to offer you better advice! @WCSDancer2010 @2Legit2Quit @fitgirl etc

[2Legit2Quit]

I used to check myself constantly as well. I started journaling my symptoms daily and w sensations and possible triggers to learn k body. Once I did that, I didn't need to obsessively check myself anymore after I learned my body. I journaled for about 8, months before I felt like I really knew my body, because it was changing so much over time w the virus. I'm still journaling a yr later. I think that may give you some relief and it does take time to feel nor al down there again. I always felt like I had a burning, crawling, pin and needles sensation down there. Be patient, it will feel normal again one day. Mine took a couple of months.I'm not so sure why people put so much pressure on them selves to not be on meds. I feel like we have a pressure andbstigma around taking meds, in regards to a highly stigmatized virus as is and I'm not sure why this is being perpetuated in our community.

 

There is nothing wrong w being on meds, nothing. Most people take it for the first yr at least if they are symptomatic, until their bodies get a better grasp on it. I think it's normal to feel the way you are feeling and you just gotta be patient.

 

 

Dancer and fitgirl have way more experience than I do. Lol....

[Leanne27]

thank you for the comments, they help me a lot.

[fitgirl]

@Leanne27 @2Legit2Quit is right, the early stages of herpes comes with a heavy dose of paranoia and worry about every scratch or tingle. Sometimes they turn out to be OB's and sometimes they don't but regardless, the emotional toll is high and it becomes hard to feel "normal". I have had herpes for 15yrs and would have OB's every 3 to 4 months for most of those years (not typical, most people find they become less frequent over time). I learned to manage the symptoms but did not take meds since at the time my partner was H+. He only got OB's every few years! I always felt sooooo much better when I didn't have an OB both physically and emotionally but I didn't consider the drugs for similar reasons to others, I worried they weren't good for my health.

 

Fast forward to present day......(well, let's say 2yrs ago). I found myself out of the long term H+ relationship and entering into a new one with a man I dated 20yrs prior. The disclosure part of the story is relevant to another thread but let's just say it went well :). This man is H- so I, like everyone here, wanted to research and figure out my best path. It was ADRIAL that swung the vote for me on taking the meds, he gave me all the facts and reasons why I should. The number one reason was to protect my partner. I contacted my dr and he assured me that herpes medication is extremely safe and has been used for many many years with very few side effects for most users. He was extremely helpful and informative so with that confidence I filled the prescription. LET ME TELL YOU....... it has been amazing!!! For 2yrs I have been on 500mg of valtrex daily (generics worked really well for me too but we can no longer get them in Canada). I have gone from having 5-8 OB's a year to ONE OB in 2yrs and that one went away in 2 days. The valtrex has taken herpes from being a constant reminder in my life to something I only think about when I take the pill. It is life changing to not have constant OB's and I also feel good about doing what I can to protect my man. I am not sure I will take the meds ongoing forever, but I am not quitting them any time soon. I would suggest you try them for a while to get yourself in a better headspace then, over time, try going without them. It's too soon to know how your body will deal with the virus long term but in most cases the OB's get fewer and fewer as the body adapts. The medication is worth the mental health benefits just as much as the physical ones.

[Leanne27]

Thank you, I will go for it, I think it will relax me into managing this. I could be lucky and only ever have the one OB but playing the wondering game is proving a bit too much for me now. I'll see my Dr in the next few days and go for it.

thank you so much everyone for helping.

[Leanne27]

Hi just an update, i have started taking the suppressants so hopefully for me it will move me towards acceptance.

[NothingGoodGetsAway]

I too took suppressive therapy right after my first outbreak. I don't have a partner to protect quite yet, but I have just started dating after being out of a 4 year relationship, and I know that doing everything I can to prevent an outbreak will help me feel confident when I meet new people (talk about a line straight from a Valtrex commercial), and eventually when I have a discussion I can tell him the precautions and the amazingly low transmission rates.

 

My gyno wasn't all that helpful with the meds (or knowledgeable about herpes - she actually said I can't transmit unless I'm having an outbreak. Oh m'am. No of course that's what I want to hear but it's just not true!), but she gave me the Rx and I ran away with it giddily. I'm going to work on getting a second opinion from a recommended doctor, but until then I will take my suppression meds.

[WCSDancer2010]

@NothingGoodGetsAway

 

PLEASE: Print this out for your Dr and take it to her ... it's from the CDC so hopefully she will take it as legit ... and ask her to PLEASE stop telling people they can't pass it on between outbreaks because that is how MOST people get it!!!! Highlight the bits I have here for her so she can cut right to the chase with the FACTS:

 

http://www.cdc.gov/std/Herpes/STDFact-Herpes-detailed.htm

 

How do people get genital herpes?

 

Infections are transmitted through contact with lesions, mucosal surfaces, genital secretions, or oral secretions. HSV-1 and HSV-2 can also be shed from skin that looks normal. In persons with asymptomatic HSV-2 infections, genital HSV shedding occurs on 10% of days, and on most of those days the person has no signs or symptoms. [4] Generally, a person can only get HSV-2 infection during sexual contact with someone who has a genital HSV-2 infection. Transmission most commonly occurs from an infected partner who does not have a visible sore and may not know that he or she is infected. [5]