This is my first post on here as a long time follower. I find this site so beautiful for support and inspiration - and I can’t thank you enough for it <3 The debate of the morality surrounding disclosure comes up often on this site - a concept I grapple with myself, and one which I REALLY appreciate being discussed from all sides objectively. I wanted to share my diagnosis story to give an idea of the ‘worse case scenario’ (or, what it felt like at the time) and why to me the debate *really* is about choice for the other person - because as much as you have to reveal yourself, that other person may very well have MUCH MORE going on than you think, and not being given a choice can be devastating (as in my case).
To make a long story short, in my decade of sexual activity, it has become clear I have an INSANE vagina and reproductive system. You name it, it has happened to me since I was 18- UTIs x 1 million, BV (bacterial vaginosis), thrush up on thrush upon thrush (yeast infection/ candidas in other countries I think), anal fissures, allergic reactions BOTH internal and external, unexplained jets of blood, and post herpes vulval pain and SO much nerve pain etc. My mum is in women’s health and she had a lot of these issues at my age pre-children as well (though not the specific herpes symptoms) and I think I only coped with it all because she’s so supportive about it. Some of these can be a sign of herpes, but let me assure you that a lot of these were occurring pre-herpes, which means I was *incredibly* sensitive already, and meant a full-on schedule of self care just to even *attempt* to have sex. It has meant a whole lifestyle commitment - cutting out sugar and starch from my diet (for problematic thrush), drinking more water than seems humanly possible everyday, taking pre-emptive antibiotics to have sex, being *really* careful about what physically goes into my body (for BV) and so on.
So its a total pain in the ass (literally) already.
When I was diagnosed as H+, it was at the end of a month of LITERAL HELL. Fire, brimstone, etc. I’d been seeing this guy for about 3 months already, and because he lived a bit far away from me, we’d only rendezvous every fortnight or so. From the beginning, I was getting a pretty serious UTI every time I saw him (a combo of ‘two weeks apart enthusiasm’, a faraway bathroom in winter, and just how our bodies fit together) As my body works, with this guy my serious UTIs meant a course (or two) of antibiotics, and no matter how pro-biotic-savvy I was, this meant thrush. Which meant a round of thrush treatment. Which *sometimes* gave me another UTI (Ha!) so I’d sort this all out, then two weeks would be up, I’d see the dude, and start it all again (before you ask, yes it seemed worth it at the time, for really fun sex).
So after one *particularly* enthusiastic visit, shit started to go really really wrong. It began as a UTI (the infamous ‘unexplained jet of blood’ made its appearance), within days I had seriously bad BV, and then I got an anal fissure (um, holy OUCH). With these all going on, I had SERIOUS vulval pain, literally like i’d been kicked hard in the crotch, and insane allergic swelling. VERY GORY. And nerve pain I had never felt before, all down legs and through my back. And it didn’t get better over time - as soon as the UTI healed, I got it again, and the same for the BV. It got to a point where I COULDN'T SIT DOWN and I literally had to ice pack my nether regions (my housemates were not too keen on the frozen peas I’d made friends with after that) and stay lying down so as to minimise the swelling. I had to take 3 weeks off work and face the horror of trying to explain how I was sick, and although my regular GP, on my 3rd visit of this debacle, took a biopsy of a suspected BO she found where I couldn’t see (and hence, was totally oblivious) she waited a week to tell me that it had confirmed her suspicions. In this week, it got so bad that I stopped being able to pee, so I went to a hospital to an OBGYN. She told me if I’d waited another day, I would have had to have been admitted and catheterised. She also said this happens a lot to women on their first out break. She told me that a lot of the problem of reoccurrence and the inability to heal these localised problems was linked to herpes. We had a good laugh together at how f*cked up it all was (which kind of helped).
SO. I’m on meds now always, and have never had another OB or pain. My UTIs have also been less problematic (also because of less sex haha). I don’t know how I got herpes - the guy I was with was one of the few people who regularly insisted on HSV checks on his sex health check up (I had NO IDEA about this - even though I regularly got full swabs and bloodwork done, I never knew you automatically don’t get tested for the herpes virus, so I have not idea how long I'd had it) and he doesn’t have it (it seems). I may have had it for a while, and this stressful event probably induced my first break out.
I really hated having to tell my mum, who had been obviously following my health closely for the last few weeks. And I think the worst part for me was when I talked to my mum about it, she told me that usually if a women has herpes, she is discouraged from giving birth naturally and has to have a c-section. I was really fucking upset about that. I still don’t know if I want kids but I had been raised in a ‘pro-natural-birth’ household because of my mum’s work, and I had never considered that I’d have to give that up (my mum didn’t think it was going to upset me so much, because so many women she works with opt for elective c-sections). So yeh, I was really just so sad for a while. And just felt really hurt that I would have another thing to manage.
I kept seeing that guy for a few months and we split for non-H reasons, he was really cool about it all. But I haven’t actually slept with anyone since and hence haven’t had to disclose yet (I was diagnosed about a year ago). I think I’m still figuring it out a bit and haven’t told anyone but my mum and the guy. I can look back now and see how hilarious icing my vagina with frozen peas was though.
What I take from this + reading discussions on this site:
I know, we all know, herpes is not a life threatening thing, and it IS really manageable. But if you ever have a seed of doubt in your mind, wondering whether you *really* need to disclose or not (especially to a vagina-owning human) - please remember that without the knowledge it can be fucking devastating. I wish I had been given the option, because with my *specific* reproductive system I really would have chosen not to, because it couldn’t handle it. I also thought I was already quite educated about herpes, and I had no idea it could wreak so much havoc on my body. Of course, this is not every human - but how do you know their own medical history without sharing?
It’s more likely whoever I got it from didn’t know, and so I try not to feel angry about it. But man it makes me respect people who give their partners the choice - even if its casual sex or something more serious, all humans really deserve a choice to own the risk themselves. And yeah, I can't even begin to imagine how it feels when that choice results in rejection. I’m not trying to add the preaching of morality and responsibility - I just want to highlight that it CAN be devastating. It is not always fine. A lot of people don’t know what herpes can do to a female body, and similarly I have no idea what it does to a male body in the worst case (would love to know more about this if anyone wants to comment?)
Apologies in advance if any of this sits uneasy with anyone - I’m totally up for other opinions and having my own ideas challenged, in fact I would dig that.
Big Love Xxxx