GHSV 1I'm so bummed

[corlissa]

I was just diagnosed in October and I was really really upsetting to me because it was contracted through a sexual assault. On top of that, my initial outbreak was horrible. It was the most pain I've ever experienced; Flu symptoms, my entire labia, urethra, and perineum were raw and had the top layer of skin peeled off. My doctor said it was the worst outbreak she's ever seen (which didn't help to hear that). I had my second outbreak in January, so about 3ish months after my first. It was almost as bad; I had flu like symptoms and couldn't wear pants for 3 days because my labia was so raw. My doctor winced when I told her and it makes me feel worse about the whole thing. I know she might be trying to be sympathetic, but it makes me feel like I'm experiencing a worse reaction to the disease than everyone else. The whole thing has been so awful and I'm not only experiencing physical symptoms that are preventing me from going to work and school, but I'm so bummed that I have it worse than others and that I had no control over being infected. My doctor wants me to go on suppression therapy with valtrex and I wonder if I should. Does anyone have any insight for me? What should I expect moving forward with this disease?

[surfsup]

I was just diagnosed in October and I was really really upsetting to me because it was contracted through a sexual assault. On top of that, my initial outbreak was horrible. It was the most pain I've ever experienced; Flu symptoms, my entire labia, urethra, and perineum were raw and had the top layer of skin peeled off. My doctor said it was the worst outbreak she's ever seen (which didn't help to hear that). I had my second outbreak in January, so about 3ish months after my first. It was almost as bad; I had flu like symptoms and couldn't wear pants for 3 days because my labia was so raw. My doctor winced when I told her and it makes me feel worse about the whole thing. I know she might be trying to be sympathetic, but it makes me feel like I'm experiencing a worse reaction to the disease than everyone else. The whole thing has been so awful and I'm not only experiencing physical symptoms that are preventing me from going to work and school, but I'm so bummed that I have it worse than others and that I had no control over being infected. My doctor wants me to go on suppression therapy with valtrex and I wonder if I should. Does anyone have any insight for me? What should I expect moving forward with this disease?

 

Yeah, all the wincing and cringing from your doc really is lame. They might be a great person and have a good heart for all I know, but that's not really the best approach for them to take. I have no doubt you are in pain, but it is doubtful you have "one of the worst cases ever". Try to take peace and hope for the fact that most outbreaks get fewer or less severe over time.

 

I am not big into meds nor am I taking any therapies. I am a strong advocate of nutrition and herbs, so I go that route. That said, I have not had any known outbreaks, so it's probably easy for me to say.

 

Even if you end up on meds, look at cleaning up your diet (gluten, soy, dairy, etc. can all trigger inflammation/gut issues in some people which lead to drops in immune system effectiveness). There are also a million supplements and herbs which are good for immune system too. Garlic, ginger, apple cider vinegar, and turmeric are some of my faves. Oil of oregano, olive leaf extract, neem are great for outbreaks too.

[corlissa]

Thanks for responding. It's honestly stressing me out more that you have never had an outbreak. You really can't understand how awful it is to have your body violated the way mine was. I'm not flippantly saying it's the worst pain I've ever had; it's absolutely excruciating. I also have stomach flu symptoms aka nausea and barfing. I take care of myself, I'm very healthy, and my eating habits are great; why are my outbreaks so severe? It's just not fucking fair.

[Lollyann76]

@corlissa I've had GHSV (don't know the type) for almost 15 years, and I can relate to the pain and misery you've experienced. I don't recall my second outbreak being AS bad as the first, but for the first year, all of my outbreaks were horrendous. I didn't have the flu symptoms every time, but the pain in my genitals, as well as the pain in my butt/thigh/leg was pure misery. I never looked at the site, I only know what I felt. I couldn't wear underwear, it hurt to sit, it hurt to stand, it hurt to walk, it hurt like hell to urinate. For the first couple of years, I had one or two outbreaks a month, sometimes more, due to stress, the emotional turmoil I was experiencing knowing I had herpes, periods, and other things I'm sure. I can't claim to be an expert, but I do know from experience that they eventually get a little easier. I rarely get outbreaks now, after getting them multiple times each month. I've had three in the last three years. When they occur, I'm able to function normally with just a little discomfort and the outbreaks clear up within a few days to a week or so. (That's for them to completely clear up. The last one was just last month and I only had the discomfort for 2 or 3 days.) I did take Valacyclovir at one point, but not for real long. It might be good for you to try taking the suppressives to hopefully prevent the outbreaks from being so horrible. You don't have to take them for life if you don't want to, but just for awhile so you aren't suffering so badly in the early stages of having the virus. Just my thoughts... :)

[corlissa]

Do you think I should expect to have several outbreaks a year? Is it typical to have them even 15 years in? Would suppressive Valtrex have prevented those outbreaks in your 1st year? On a scale 1 to 10, how bad are your current outbreaks compared to your 1st? I'm not looking forward to 15+ years on outbreaks. @lollann76

[surfsup]

Thanks for responding. It's honestly stressing me out more that you have never had an outbreak. You really can't understand how awful it is to have your body violated the way mine was. I'm not flippantly saying it's the worst pain I've ever had; it's absolutely excruciating. I also have stomach flu symptoms aka nausea and barfing. I take care of myself, I'm very healthy, and my eating habits are great; why are my outbreaks so severe? It's just not fucking fair.

 

I get it -- I can't pretend to know what you're going through. And I am not sure I have never had an outbreak, I just have a weird situation. Have HSV-2, but after sex with a new partner, had only symptoms that would indicate oral HSV. So I might be a rare care of oral HSV-2, or I might have genital HSV-2 with no symptoms and when I thought I maybe had my initial outbreak in my mouth it was really a flu or strep throat.

[Lollyann76]

Do you think I should expect to have several outbreaks a year? Is it typical to have them even 15 years in? Would suppressive Valtrex have prevented those outbreaks in your 1st year? On a scale 1 to 10, how bad are your current outbreaks compared to your 1st? I'm not looking forward to 15+ years on outbreaks. @lollann76

 

@corlissa I can't really say what you should expect as far as outbreaks go because we're all different. From what I've read on here, GHSV1 outbreaks are less frequent, and in your first post you say that your second outbreak was about three months after your primary outbreak. For myself, I had numerous outbreaks just within the first few months. Yes, I would say it's typical to have outbreaks even 15 years in. Two that I've had in the last few years were due to stress, and the most recent was due to having a LOT of "vigorous" sex within a short period of time. This is a major improvement for me, because for the first couple of years after diagnosis, the smallest amount of stress triggered an outbreak. I've experienced massive amounts of stress over the last few years, and only two outbreaks have occurred. I also take supplements such as a B complex, L-Lysine, Vitamin C, and Zinc, which all help to boost the immune system. I do think that taking the suppressive meds would have at least helped with the outbreaks within the first year. When I did take them, I had fewer outbreaks that were less severe and cleared up more quickly. On a scale of 1-10, compared to my first outbreak, my current outbreaks are a 0. The biggest issue I have with outbreaks these days is the reminder that I have herpes. In other words, the mental and emotional anguish affect me more than the physical symptoms I experience, and even those things aren't as bad as they were in the beginning. I can remember being where you are, dreading another outbreak and hating the idea of having them for the rest of my life. Just know that it will get easier, and try not to think about it so much. Thinking about it a lot can and will make things so much worse. (((hugs)))