Herpes is no big deal, except when it is.

August 11, 2019 5:06 AM

I have had genital herpes for the past 10 years. I know it's not a big deal for most people, but mine is a very big deal. I basically have an active outbreak about 1/3 to 1/2 of my life. I am newly single, in my 50s, and absolutely terrified to try dating.

I know genital herpes is extremely common and most people don't even know they have it, etc. That is not me. I have an average of 18 outbreaks a year. Even if I catch them early, the medication reduces their duration to about a week instead of two weeks. I tried suppression therapy in the second year I had herpes, but it had little to no effect on the number of outbreaks.

I don't know why my outbreaks are so frequent, but I do know that intercourse triggers them -- it's the friction, and no amount/type of lube helps. I'm also menopausal, which means very diminished lubrication and vaginal atrophy. I am taking HRT but it doesn't help my vagina.

I got the herpes from my my ex 10 years ago, so I've never had to go out dating with this. I'm feeling a lot of despair and don't think it's realistic to seek out a relationship.

Even without herpes, I have a pretty dim view of men, and a very hard time believing there are nice ones out there who'd be interested in any woman my age, let alone one with herpes. My therapist asked if I'd consider a herpes dating group but the thought of revealing my status to anyone besides my doctor and therapist makes sick with shame and fear. I wouldn't want friends to set me up with anyone (if they knew nice single guys, which they don't), because of fear they'd find out about my herpes.

I believe I'm looking forward to a pretty bleak future, relationship wise. If you have any experience to suggest something more hopeful, I'd love to hear it.

posted by anonymous to Human Relations (16 answers total)

Shame around telling civilians you have herpes could be linked to the fact that it is related to a trauma - your ex gave it to you. Get some specialised trauma therapy around that, get some coaching to practice telling people, and join the herpes dating group.
posted by Mistress at 5:21 AM on August 11, 2019 [5 favorites]

How much have you spoken to your doctor about this? It might be worth seeing a specialist in sexual health who might be able to suggest another trial of suppression and investigate why you're having such frequent outbreaks (such as potentially being immunosuppressed for whatever reason).
posted by snoogles at 5:56 AM on August 11, 2019 [6 favorites]

That "sick with shame and fear" seems like a thing to work through very gradually and gently with your therapist. You're not going to just pull up your socks and get over it, and the goal wouldn't be to do that, or to try to bludgeon yourself into doing it by sheer willpower. But it's absolutely something you can work through slowly and creatively, with help and with a lot of kindness.

I agree a therapist who knows things about trauma could be helpful, whether or not you consider getting herpes to have been a traumatic event. Therapists who do that kind of work really understand shame and fear, and specialize in helping people work through those feelings.
posted by nebulawindphone at 6:11 AM on August 11, 2019 [6 favorites]

I wouldn't want friends to set me up with anyone (if they knew nice single guys, which they don't), because of fear they'd find out about my herpes.

If I set my friend up with a guy and he came back and told me “oh, she has herpes,” I would not think one iota less of my friend. I would think “wow, I feel bad I set my friend up with a guy who talks about or judges her private information, what a jerk.”
posted by sallybrown at 6:30 AM on August 11, 2019 [20 favorites]

I agree with the suggestion to see a trauma therapist. Focus on you for awhile.

I also deal with feelings of shame, being gross/disgusting etc. I’ve had those feelings for a long time, and have been surprised at how helpful my trauma therapist has been with them (especially since I’ve had those feelings for much longer than the trauma that’s the reason I’m seeing her).

I know it might feel like you don’t have all the time in the world, but you kinda do. There’s no reason to jump into dating this year, even—you are enough without being in a relationship, and your value is not changed by the judgment of potential partners.
posted by ocherdraco at 8:07 AM on August 11, 2019 [3 favorites]

I have no experience with herpes but I do have experience with dating as a cishet woman in your 50s. What I’ve found is that people in our age group will overlook a lot of things, especially health related things, because they also have health related things that they’re kind of embarrassed about. Nobody makes it to 50 unscathed.
posted by MexicanYenta at 8:13 AM on August 11, 2019 [31 favorites]

Please, PLEASE try suppressive therapy again. Your case is very extreme and you should not have to suffer like this. Please talk to your doctor. Take care.
posted by tristeza at 8:23 AM on August 11, 2019

Please try suppressive therapy again [i'm a nurse practitioner in women's health but not your nurse practitioner, etc] -- you may need a higher dose or different antiviral, or targeted topical estrogens to toughen up the epithelium, a workup on your overall health, and maybe straight up a consult with infectious disease especially if there's an academic medical center around.

there's so much shame/stigma around STDs, and I think a lot of providers perpetrate this shit by throwing up their hands and saying oh, well, you just have herpes, sucks to be you, nothing to do about it, when YOU DO NOT HAVE TO LIVE THIS WAY, and i can almost guarantee there are things to be done. i have real strong feelings about this.

please hang in there, i know it's a lot of logistical and emotional effort to try and find a provider (or multiple providers) to take this part of your health seriously, but you deserve it. and if a provider isn't taking this part of your life and wellbeing seriously, fire them. xoxoxo.
posted by circle_b at 9:51 AM on August 11, 2019 [31 favorites]

Check out The Herpes Opportunity. It's a website with articles, videos, interviews, forums, all geared toward helping people live with and even embrace having herpes and release themselves from the associated shame. I think the operator sells coaching and maybe some workshops, but there's a lot of free content and support and you can read and watch lots of people who are going through the same thing as you.

Lots of love and support to you! It's not easy being a human period and I'm sorry you have to deal with one extra thing that our society has decided to stigmatize even though it's really not a big deal!
posted by Jenny'sCricket at 10:21 AM on August 11, 2019

Another NP chiming in and strongly supporting curcle_b’s comments. You are having an extreme number of outbreaks—Id usually prescribe suppression for someone having 3-4 outbreaks per year. You’re having more than one a month! You really shouldn’t have to suffer like this. Herpes can be hugely stigmatizing but it is extremely common. I might work on getting your symptoms under control so you can get to a place of feeling a bit better about it and yourself and then try to tackle dating? I’m so sorry you’ve been suffering for so long. Depending on where/who your provide r is and/or how much you feel supported, you might want to try a Planned Parenthood as they see loads of HSV and are well-equipped to manage it. Good luck and take care.
posted by stillmoving at 11:38 AM on August 11, 2019 [9 favorites]

I had an extreme number of recurrences for the first two years, suppressants didn't do a damn thing until my immune system had built sufficient resistance. It's like they needed a "foothold" to get started. At the two year mark antivirals became very helpful indeed! Please try them again, get yourself to a specialist. I suggest a women's health practitioner and/or infectious disease doc, also check out this page for links to top clinics.

Do you have triggers besides friction? I found that cutting waaaaay down on alcohol, coffee, chocolate, coconut milk/meat, nuts, seeds and sugar greatly reduced my number of outbreaks, probably because of the high arginine content and immune system stress some of those substances caused. I also suggest doing a workover of your whole body if you haven't. For example I have chronic autoimmune and endocrine problems, treating those, using antivirals and making sure I get plenty of healthy food, rest and movement has brought me down from 12-18 debilitating outbreaks per year to 1-2.

On to sex. Are you open to activities besides penetration? Vibrators through fabric or clitoral air stimulators might be fun and less likely to cause issues. Personally I have trouble with friction too, and got really sensitive to lube ingredients after contracting HSV-1. Coconut oil is the only thing that doesn't set me off. If you do like dildos, glass is the kindest material for sensitive tissues.

Feel free to MeMail me! You are def not alone. I got herpes in a traumatic way, therapy really helped me but so did figuring out way to keep having great sex. Which, I assure you, is possible.
posted by aw jeez at 12:32 PM on August 11, 2019 [3 favorites]

I discovered I had genital herpes in my 50s, while I was still dating men. It sucked to discover that. The outbreaks sucked as well (though I have fewer outbreaks than you). I put my health status in my OK Cupid profile, no kidding, and still dated and had a sex life.

It was hard not to feel horrible. As I started telling close friends my news, it turned out that many of them had herpes, too. In my case, the whole secrecy thing made me feel like I was the only one. Completely not true.

MeMail me if you want to vent or ask any questions. I am not a health professional but I am a single poly gal who has dated successfully for several years despite having herpes. Hang in there!
posted by Bella Donna at 12:39 PM on August 11, 2019 [3 favorites]

Another suggestion that might help you get the right medical care: not everyone knows that there are a few different kind of doctors for gynocological care. Almost everyone is familiar with OB/gyns, but there are also urogynecologists who focus more on the vulva and genital tract as the main focus, rather than a very important part of the reproductive system (as OB/gyns do). Might help to work with a urogynecologist. I sure do hope you find some medical relief--as well as peace of mind, and love, of course. Take care.
posted by Sublimity at 1:50 PM on August 11, 2019 [1 favorite]

+1 on avoiding foods with high levels of the amino acid arginine. Before knowing about it, my outbreaks went from 1 a year to 1 a month after making a substantial change in what I ate. Outbreak frequency returned to 1 a year after I reduced arginine levels.
posted by Homer42 at 1:59 PM on August 11, 2019

Are you sure it’s herpes? Behçet's disease can mimic recurrent herpes attacks but would be totally unresponsive to antiviral suppressive therapy.
posted by FungusCassetteBicker at 6:33 PM on August 11, 2019 [4 favorites]

Re: FungusCassetteBicker, I actually have Behcet's (it's fairly rare), and the other classic symptom would be mouth sores. If you have those as well I would be strongly suspicious, although I am a weirdo and almost never get mouth sores. Finding a doctor with experience is tough, but it responds to steroids, so you can always ask your doc about trying a topical steroid to see if the sores respond.
posted by zug at 8:42 PM on August 12, 2019