Overcoming Herpes Shame & Stigma

The worst case scenario: a tale of a broken vagina.

A real conversation from the Herpes Opportunity community. For over 13 years, the H Opp forums were a safe space where thousands of people shared their most vulnerable moments. The forums have since sunset, but these stories live on. More in Overcoming Herpes Shame & Stigma
eels67Community Member

Hi team!

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

DanaaaaaasaurCommunity Member

Thanks so much for posting your story! :) I'm sorry you had a rough time to start with. I was just wondering which medications you were on to stop the pain? I've had post herpetic neuralgia for almost 2 years and I'm not sure I'll ever be able to fix it :( x

eels67Community Member

@Danaaaaaasaur thank you! and I'm sorry it's still going, that's bloody annoying for you! I'm on Apo-valaciclovir (or valaciclovir hydrochloride monohydrate) 500mg every day (I think this is a fairly commonly prescribed med...?) Initially after I got diagnosed, my doctor bumped this up to twice a day to get over the initial nerve pain. About 3 months after, I thought I had more nerve pain and bumped it up again to twice a day for a week, and that seemed to help. But I can't say I know much about different medications, this is the first thing I was put on and I've stuck to it since - I don't know if it has special ability to treat the nerve pain. Have you ever asked a OBGYN/ Urologist? I find mine knew SO much more about HSV than my GP (understandably I guess) I hope you can figure out! I really feel for ya xx

MMissouriCommunity Member

You made a very good point in not knowing people's other health issues that may make them more impacted by an STD. Most people don't list their vaginal or other health issues (lupus, fibromyalgia, etc) prior to having sex.

Please don't think you have to have a csection just because you have herpes. It's not true. If you've hung out on the boards, you've seen that some of us have had vaginal births and the babies were just fine.

Enjoyed the post. I got a chuckle about your peas. Whatever works right? Lol

eels67Community Member

thanks @MMissouri and @Bambina3 that's really to good know you have navigated this stuff (and @Bambina3 yay for healthy babies!) My gyny did tell me more recently that lots of H+ women still have vaginal births so that did calm my fears a lot (and I taught my mum something new!) And a point I've come to realise from mother-friends recently - you never know what will happen in birth anyway, and many women (without even worrying about being H+) have emergency c-sections despite their best laid plans for 1000 reasons/ complications - so there's certainly no use worrying about something you may not have control over anyway.

It's awesome reading thoughts and comments from all the mothers on here, it's really comforting. Thank you :) x

Bambina3Community Member

In reference to vaginal births I'd like to chime in.

First, I was unaware I've been carrying the h2 virus all this time, and gave natural childbirth to all of my beautiful healthy babies...I thank God for no complications because we were not watching something I didn't know I had.

eels67Community Member

@hippyherpy - I was thinking exactly that, what are the factors that determine how you *might* react to having herpes? And are there certain strains that are more vicious? (like you might have particularly nasty strains of the flu)

In terms of having to tell someone - it seems there's no assurance that if you have had no symptoms, that someone else will, and similarly if you had a bad reaction or continued problems with nerve pain/ OBs that they will also experience that - is there any way to predict any of that?

It seems like it's completely idiosyncratic.... hmmm :/

optimistCommunity Member

@eels67 In the U.S., it is estimated that 25-30% of pregnant women have genital herpes but cases of neonatal herpes are pretty rare (less than 0.1%) even though most of those women are unaware of their positive status and therefore not taking any precautions such as antivirals. It's my understanding that the greatest risk is when pregnant women contract HSV (GHSV1 or HSV2) in late pregnancy.

eels67Community Member

@optimist wow that's really interesting, I didn't realise the rates were that low - thank you for sharing!

hippyherpyCommunity Member

If 80% people don't have symptoms, I wonder how many people who get herpes have symptoms that as bad as yours.

Also, you say that your vag is volatile and that seems to be make your outbreaks worse.. got me thinking:

In general, is there a way for people to predict how bad herpes will be if they get it? Then those who know they are at risk of getting bad symptoms could take extra precautions to not get it.

MMissouriCommunity Member

I can step in and say I've had similar symptoms as eels67, but only if my partner finished inside. I'm fine if they pulled out, but if they didn't, I was pretty much guaranteed an infection within a day or two. I contributed this to my body just does not like sperm. Maybe it's the acidity? No idea. I also seem to get infections with condom use. (I know, wonderful eh?)

Anyways, as far as my outbreaks go- After that first bad one, I've noticed itching occasionally. I can't even remember the last time I saw a blister.

So, in my case, although my vag does not seem to like intercourse with sperm/condoms, it does not affect my outbreaks.

eels67Community Member

@MMissouri - yep same as me! It's kind of toxic to me. If that happens, I will most likely get BV wthin a day or two, as well as maybe a UTI or thrush as well, and just generally in the whole area it is irritating. I also have found so far doing 'that' has no connection to outbreaks though.

@hippyherpy - I don't think it is connected to herpes outbreaks specifically, but yep, for a lot of women it Can cause great problems, I'm not sure where the 'healthy' idea originated - I literally avoid it like the plague haha but again, different for every person.

Missouri if it makes sense, I've always suspected that having semen internally disrupts your internal bacteria, and that's why it sometimes results in BV. BV is sometimes caused by excessive cleaning or douching (and I saw once someone call it the 'clean persons' disease) and I suspect for me at least that's the problem, because obviously there's some delicate balance going on in there haha

optimistCommunity Member

Sorry if this is a little off topic but it reminds me a bit of pet allergies. 10-15% of people develop allergic reactions to pets ranging from mild to severe.

optimistCommunity Member

@hippyherpy I'm just guessing but I think observing people with the more publicly obvious oral HSV1 could be one indicator of how common it is to have chronic and severe genital outbreaks. I do recall having a couple classmates who had chronic outbreaks during sunny months but most kids either had an ocassional cold sore or no cold sore at all.

eels67Community Member

Haha I can't help but wonder which poor pregnant women were a part of that study...

@hippyherpy - I don't think "herpes doesn't like cum"

More the case is:

Some vaginas/ women's bodies react badly to semen

And in totally seperate news

Some women's bodies react badly to herpes

I don't think the two are actually connected, it's just when these problems overlap, it's a total shit fight. As in my case.

That is to say: no H+ gals should fear semen purely because they have herpes :)

MMissouriCommunity Member

I'm laughing at this thread. I can't see very much of my screen do to this maddening pop up that refuses to go away (and there is no X button, lovely!) So if I misread anything blame it on "the talk" lol

Anyway, I didn't mean my outbreaks were affected by sperm. I just meant that I get infections from sperm (as in bacterial and yeast). My outbreaks are nonexistent at this point.

And I have no idea where you got that information on pregnant woman but the thought of swallowing while pregnant made me gag! LOL

I agree that it may be an allergy or a pH issue. Who knows.

MMissouriCommunity Member

My favorite line was: "pregnant woman should, rather than abstain from sex, cater to their partner's sexual needs, in order to remain healthy themselves."

@eels67. it even has the cure for our problems with semen!! Did you read that part about building up a tolerance for semen but ingesting more of it?? Dying laughing here.

It also cures depression. I though that was sex in itself, not the semen.

@hippyherpy, thanks for the share. Interesting read.

(Am I the only one with the pop up issue? No one else's screen is blocked?)

MMissouriCommunity Member

@hippyherpy- you're promoting a lot of STD spreading sex there lol. First, we'd have to have unprotected vaginal intercourse to see if the guys sperm was volatile. Then if it was, we'd have to have tons of unprotected oral sex to prove the theory. Just how many mouthfuls would be necessary to combat the reaction? The thought has me ill. Not that I don't swallow on occasion- but it's definitely not my choice for a 3xs a day type deal. Everyday? and would this be for life? Could you imagine? That man might either be very happy or very drained lol

Maybe eels67 would be willing to try? I'm sitting this study out lol

I've never had any bad reactions from oral sex.

hippyherpyCommunity Member

Cum initiates outbreaks? Interesting.

I thought cum is supposed up be healthy for women.

eels67Community Member

Hahahahaha an interesting experiment for some poor soul/ willing participant out there!

I also have zero interest in testing this theory and will HAPPILY live with a semen sensitivity if this is my only option.

HAPPILY. FOREVER. 100%.

(P.S.: can you IMAGINE the ethical clearance application involved with this study?!?!)

@MMissouri - that's what I thought about the article, replace 'semen' with just 'sex' or maybe 'human contact' and that article actually makes sense

Interesting about the PH, I knew about the soap + sugar problems, but didn't realise semen was in that group - the 3 S's, easy enough!

What I use to help with PH is apple cider vinegar, I try to drink it everyday and sometimes bath in it too - also a much better more palatable approach than drinking semen? Hahah

Also, so much lol at how this discussion has progressed...

hippyherpyCommunity Member

I read that pregnant women who swallow the man's cum feel better from morning sickness or helps the pregnancy in some way.

I didn't know that herpes doesn't like cum.

SunDevourerCommunity Member

.... Lololol. Oh goodness

MMissouriCommunity Member

Eels67- I have to admit I didn't think about ethical clearance, I was stuck on the wonder of what type of applicants would even join this study! They'd have to be.. er..quite hungry lol

Yes, vaginal pH is acidic- pH range of 3.5-4.5 and semen is alkaline-7.8-8.1 so that's a pretty big difference in pH.

When we were talking about this i decided to google. I know, I know. Anyway- I thought I'd share an article I ran into just for laughs. I got those three "S" from this. Google- "Your vagina is a tomato". LOL!!

Sometimes I wish this forum had an open chat!

eels67Community Member

Hahahahahahaha Personal mantra: my vagina is a tomato.

@MMissouri oh my gosh this is such a good article!! - "but it’s not supposed to smell like floral rain. It’s supposed to smell like your vagina." Truer words have never been spoken. Everything said here makes SO much sense. I don't understand why gynys haven't told me all this before...?

@hippyherpy have a read - I think it explains the sensitivity thing really well.

[link inactive]

Community Member

Hi everyone,

I full understand how is the despair of herpes because I did had this kind of infection in the past.  I've suffered for years but then one day I said to myself; today I will take this horrible thing from my body, and I did it! I started doing researches almost day and night. One day a milacro happened, I found something that finally gave the result I was looking for. I found a precious medication here in this website: [link inactive]

I would be happy if this can help some of you that is passing for such situation of herpes breakout with pain and irritation.  Please reach this website and there you will find a true help for herpes.

I hope this help everyone,

Much Love

Me

hippyherpyCommunity Member

Very interesting. I've never heard of vaginas having bad reactions to semen like that. Like an allergy? Would make sense considering that the vag might have defenses to only let the most fit sperm in to the egg. Nature is endlessly fascinating.

hippyherpyCommunity Member
I'm laughing at this thread. I can't see very much of my screen do to this maddening pop up that refuses to go away (and there is no X button, lovely!) So if I misread anything blame it on "the talk" lol

Anyway, I didn't mean my outbreaks were affected by sperm. I just meant that I get infections from sperm (as in bacterial and yeast). My outbreaks are nonexistent at this point.

And I have no idea where you got that information on pregnant woman but the thought of swallowing while pregnant made me gag! LOL

I agree that it may be an allergy or a pH issue. Who knows.

Read this and blow your morning sickness away (pun intended)

[link inactive]

eels67Community Member

Oh my. I feel like that pun @hippyherpy is on the mark. This is barfy.

Love this line:

"Besides his obvious interest in the effects of consuming semen, he is best known for inventing the mirror test which is able to measure the self-awareness of animals."

If I am never known for research which reveals my 'obvious interest in the effects of consuming semen', please. Set me straight.

hippyherpyCommunity Member

If it would be interesting to see if it works. You girls who have semen-reactive vags could do an experiment and do some blow jobs. If this guy is right, then it might help with some of the symptoms. Who knows..

Did you ever notice a difference after giving head in the reactivity of either semen caused allergy or semen inspired herpes awakening?

hippyherpyCommunity Member

I don't recall reading that article anything about three cum portions a day, but maybe I missed something. That would be incredible if the body could read the sperm like that so it recognizes something out in the mouth down in the vag.

MMissouriCommunity Member

It didn't have an amount, I was guesstimating.

I guess it would make sense. What you ingest does have an effect on your body. And I have read that water and food intake alters vaginal pH. The theory of it all is hard to swallow though (pun intended).

I just went and researched it. It is thought to be a pH issue. Avoid soap, semen, and sugar. Doesn't that sound fun?

Bambina3Community Member

Ok so I have to admit, this is my first time skimming and reading this thread...and my first laugh at h onsite..(h likes cum)....thanks guys ;)

hippyherpyCommunity Member

What is meant by that- "your vagina is a tomato" ?

MMissouriCommunity Member

It's an article online, I'm assuming the title is due to the acidity of it.

MMissouriCommunity Member

@eels67 I enjoyed the read too. Glad you liked it. I agree it makes sense! And I've actually mentioned to an OB/GYN that I seem to have issues with sperm. They looked at me funny! Like- "okay.. moving on.."

Wha? You mean i can't smell like flower petals? Joking. I thought that was a very true statement also. I just might have to try the soap she recommended!

AJ2015Community Member

I had my son 8 weeks ago vaginally ... beautiful strong and healthy baby

eels67Community Member

Oh wow Congrats @AJ2015 - that's so lovely!!! <3 <3 <3

AJ2015Community Member

so please never worry about that part with H lol

MMissouriCommunity Member

Congrats on the new baby!!

n_merCommunity Member

I've been recently diagnosed and reading this made me feel better, not because of all the pain you were in, but because I was in a lot of the same pain. I had the pains in my legs and back and even though my outbreak is gone I'm still having trouble peeing. Sadly, I unknowingly gave it to my partner and that has caused me so much guilt on top of everything. I wish I would have known and had a choice from whoever gave it to me

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