Herpes Hypochondria
January 21, 2018 10:45 AM   Subscribe

I've had life long struggles with hypochondria but recently an extreme focus of my anxiety has been around contracting herpes. Despite my bouts of panic stricken googling and webMD searches, I am realizing that I do not have accurate facts about symptoms, signs, transmission, etc. Looking to be educated / pointed towards quality resources so I can have a fruitful conversation with my doctor. Looking as well for any thoughts on how to deal with my anxiety.

For context, I am a straight single male in my late twenties. I have never in my life had unprotected vaginal sex and I do my best to abstain from giving or receiving oral sex due to my anxiety.

There are instances in which I have (knowing the risks) succumbed and went ahead with oral sex, or, like most recently (which is prompting this post) not communicated my wish to avoid oral sex well enough to the partner I am with - resulting in her going down on me with no protection.

These "instances" are followed by days of panic and near constant trips to the bathroom to inspect my genitals, noticing "red spots" or "bumps" that could be herpes, as well as endless google image searches so I can prove to myself I know what I am looking for.

In the throes of some of my previous panics I've see doctors and dermatologists, had swabs and blood tests performed. Thankfully none of the test results have ever suggested herpes.

But these past experiences are not helping me when a fresh panic sets in. How should I be thinking about actual transmission via oral sex? I've never kissed or received oral sex from someone with a cold sore - is that the standard of safety?

Would also love to hear any anecdotes from those who may have navigated similar fears.

(And yes, because I know someone will ask or suggest, I am currently in therapy for my hypochondria and other anxiety related issues.)
posted by anonymous to Health & Fitness (18 answers total) 2 users marked this as a favorite
Lots of people have HSV-1, like ~2 out of 3 people. Realistically the impact is that you might get a cold sore once or twice a year. HSV-2 is slightly more rare, but still ~1 out of 6 people have it -- "About one in six people ages 14-49 in the United States have genital HSV-2 infection. However, most people don’t know they are infected because their symptoms are too mild to notice or mistaken for something else.".

Realistically there's very little bad that will actually come of having HSV-1 or HSV-2. Acyclovir is very effective at treating outbreaks in the rare chance that you have an outbreak that negatively impacts your quality of life. So yeah, therapy, because there's not much to be logically concerned about.
posted by so fucking future at 10:56 AM on January 21, 2018 [4 favorites]

My advice is: don't. Don't research any more. Don't look for definitive signs and symptoms. Don't calculate odds. Don't look for "standards of safety." Don't go to the doctor.

When you're mildly anxious, sometimes it can be reassuring to confirm to yourself the unlikelihood of the event you're worrying about. But when you're consumed with anxiety, there is no reassurance. Research is just another form of rumination, another way of investing your mental energy in the anxiety. Don't do anything to encourage the spiral.

It sounds like you may have anxiety around your sexuality, not just your health, and it might be helpful to bring that up in therapy.

(Just for the record, herpes is nothing to be ashamed of, nor would it ruin your life.)
posted by praemunire at 10:57 AM on January 21, 2018 [6 favorites]

I've had herpes since I was a little kid. I must have gotten the virus from my parents, who both had mouth sores occasionally.

I manage the virus by taking acyclovir when I feel a cold sore coming on, which shortens the active sore phase to a couple days rather than a week. That's the extent of its impact on my life. Would I rather not have it? Sure. Would I give up oral sex to not have it? Nope!

My husband has never had a cold sore and we've been together through many many many outbreaks, including one the week after we started dating which made me feel super self-conscious and he shrugged off by saying "it's just a virus, why would you feel bad about it?".

Avoid sharing eating utensils or drinking glasses with someone who has a cold sore, avoid oral sex or kissing someone who has a cold sore, and you're miles ahead of the like 66% of the population who already has the herpes virus. Stop letting it rule your life like this.
posted by lydhre at 11:20 AM on January 21, 2018 [12 favorites]

Have you already tried understanding how NOT a big deal it is to have herpes? Your question is focused on hearing things that would make you feel safer about not contracting it rather than on mitigating your fear of what you see as the worst case scenario. If you're able to, that would probably reduce your anxiety a lot more than obsessively trying not to get it.

I know logic doesn't help with these kinds of anxieties, but is it useful to remind yourself that your anxieties are affecting your enjoyment of sex more than having herpes probably would?
posted by metasarah at 11:36 AM on January 21, 2018 [2 favorites]

Your anxiety about getting herpes is having a bigger and worse impact on your life than actually having herpes would. Are you worried people wouldn't want to have sex with you if they knew you had herpes? I bet there are a lot more people who would rule you out as a partner if they know you're afraid to have oral sex. (I would.) If you could somehow convince yourself to stop trying to prevent herpes and as a result you ended up getting herpes, you would actually be better off than you are today.
posted by Redstart at 11:39 AM on January 21, 2018 [12 favorites]

You say you're in therapy, but are you taking anti-anxiety meds?

I used to suffer from an extremely similar phobia and engage in behaviors exactly like what you described (and when I say suffer, I mean it, because this level of anxiety can honestly be nonstop suffering). I take anti-anxiety meds now and I don't feel that way anymore and it's a bigger relief than I ever imagined possible.

As the posters above said, herpes is not a huge deal, it's nothing to be ashamed about, and it won't ruin your life. But this really isn't about herpes. The conversation you need to have with your doctor is not about HSV but about a more effective treatment plan for your anxiety.
posted by the turtle's teeth at 12:08 PM on January 21, 2018 [7 favorites]

Before becoming intimate with your prospective partner, how about requiring that you both get tested for herpes alongside all the other infections that can be passed? You can then swap results and determine what precautions, if any, need to be taken. For herpes, you would both need blood tests for HSV-1 IgG antibodies, and HSV-2 IgG antibodies. Various online STD testing portals will let you purchase the tests and go to a local lab to be drawn, you don't have to involve a doctor.
posted by txtwinkletoes at 12:28 PM on January 21, 2018 [1 favorite]

Lots and lots of mild or completely benign things cause dots, bumps, and discolorations on genitals when you are sexually active that aren't sexually transmitted diseases. I know that it can be anxiety provoking- been there, got the t-shirt- but after learning about all the things that can happen that aren't necessarily STDs, it really cuts down on the worrying when something happens.

At the top of the benign list are mechanical, "wear and tear" related things. After especially vigorous sexual activity it is not uncommon to have little subcutaneous hematomas, or mini popped blood vessels, which can cause small red blemishes or even small pea sized lumps anywhere on the penis. These go away in a matter of days or a couple weeks and usually aren't accompanied by any particular pain or sensation at all.

Then from oral sex particularly, it is not uncommon to get fungal infections from someone else's mouth. It turns out that mouths are pretty fungus-ey places. Women experience this as a yeast infection often; men get a condition called balantitis which is basically a fungal infection of the tip of the penis- think of it kind of like athlete's foot of the shmeckle. Everyone's skin is different and it can take the form of a diffuse, spread out rash, or evidence as dots or patches of rash. The itchy and burning sensations associated with something like this make many people think it could be Herpes or another STD, but it is easily cleared up with over the counter anti-fungal creams or stronger prescription creams.

Then, more uncommon for genital infections, but possible, are benign warts called molluscum contagiosum. Unless you come into direct contact with someone with them, you won't get them. There are treatable as well because the virus lives on the skin and not in the nervous system as Herpes does, so they usually clear up on their own or can be removed by a doctor.

Finally, as everyone has mentioned, Herpes is very common and many people have the virus and many more have been exposed to it and not necessarily contracted the virus. The blood tests that screen for Herpes I and II are antibody based tests- not a test which detects the virus itself. Therefor, there are a range of antibody levels that people who are considered not to have the virus can exhibit in the blood tests. Because many people are getting results back showing some antibody levels in negative or neutral ranges that don't have an infection of the virus, the CDC is now providing guidance that doctors not order Herpes I and II screens as part of standard STD panels because the anxiety and psychological problems being caused by these results is causing more suffering on balance than the non-existent infection. It is recommended that only if a person has symptoms or reason to believe a transmission occurred, that testing is appropriate.

My own feeling about Herpes from oral sex: If someone had an active, noticeable outbreak on the mouth, I would request that we hold off on oral sex. With that said, it can get transmitted even when nothing is outwardly visible. My own perception of the risk is very low in this case. If this is a data point the allay your fears: when I was in college, I was young, reckless, and generally didn't think about risk, and my girlfriend at the time one day had a very noticeable lip outbreak. She performed oral sex on me a few times and nothing ever became of it. I have never had symptoms nor have any blood tests to screen for it have come back positive for Herpes. Would I do it again? No, but I don't think Herpes is like Ebola that the most minute exposure of it and the next minute you'll start sweating with god awful diarrhea.
posted by incolorinred at 1:07 PM on January 21, 2018 [3 favorites]

Much of the stigma against herpes was created by drug manufacturers after they developed drugs that would treat it.

I would make a decision about the level of caution you want to take and then not read anymore and not get tested again or examine yourself for signs or symptoms unless you are in clear pain or have some lesion that's obvious without you looking for it. Like, if your body has a problem that's causing you distress because it's painful, investigate. Otherwise, leave it all alone.

Many years ago after a possible exposure, I developed an almost paralyzing obsession like this with the possibility that I might have and spread bedbugs, and giving in to it by repeatedly examining my bedding with bright lights, etc only fed it more. I eventually settled on the idea "don't borrow trouble" - I try to use reasonable caution to prevent myself from being exposed but my policy is that I will only start worrying or investigating more if I'm persistently itchy or if there are easily visible blood stains on my white sheets.
posted by needs more cowbell at 1:26 PM on January 21, 2018 [2 favorites]

[This is a response from an anonymous answerer.]
Just to give you some anecdata that might help: I’m a het woman who’s had a fairly large amount of sexual partners and right offhand, I can think of four of them who disclosed to me that they had the HSV-2 virus; one of them is a regular sexual partner right now. I’m sure at least another half dozen have had it and didn’t tell me, either because they didn’t want me to know or they didn’t know themselves. None of them ever passsed the virus to me (I always use condoms). And as others have noted, it’s not a huge deal even if someone did pass the virus to you; basically, you just make sure you don’t have sex if and when you have an active outbreak, and some people who are HSV positive literally never have an outbreak.

Basically, I think Redstate really hits the nail in the head here. Your fear of herpes is having a far greater negative effect on your sex life than actually getting herpes would.
posted by cortex (staff) at 1:27 PM on January 21, 2018

For me, low dose Prozac, (10mg), totally turned this anxiety off like a light. And gave me a perspective on how brain-misfiring it was, so that even years after stopping the med, the anxiety has never come back the same.
posted by mercredi at 1:49 PM on January 21, 2018 [3 favorites]

I don't think there is anything wrong with wanting to avoid herpes and choosing partners without it. I don't have it either, not even the antibodies and I want to keep it that way. I don't judge others who have it. I just don't want to get it myself. It manifests differently in different people and for all I know, I could end up having constant outbreaks. I am very careful with partners. I flat out won't date someone with HSV2. I will date someone who has HSV1 antibodies, but has not had an outbreak. I don't really care for oral sex, so it's not a problem for me to give that up.

There are women out there that don't have either type of herpes and who will be willing to show you their test results. I don't have sex with strangers though and don't have a desire to have sex with strangers. If you want to have sex with strangers and don't want to get herpes, that's going to be very difficult, so I think you'll have to make a choice.
posted by parakeetdog at 1:50 PM on January 21, 2018

The over-the-top, life-disrupting nature of this anxiety obviously calls for some reframing about the likelihood and severity, etc, and you got good advice upthread. But once you get things feeling more manageable, you should know that your choices aren't unprotected oral (and the accompanying anxieties) or no oral (and the accompanying social awkwardness/frustration for everyone). Condoms and dental dams for receiving and giving oral, respectively, will do a lot to reduce (not eliminate) the risk of transmission of all sorts of STIs. The use of protection for oral sex is a habit more of us should get into.
posted by hollyholly at 3:14 PM on January 21, 2018

You should not ruminate on this. However, if you are going to continue to research, I highly suggest you read The Good News About the Bad News: Herpes Everything You Need to Know by Terri Warren RN. This book is written by a highly regarded expert who has also run a sexually transmitted infection clinic.

That being said, most people who have responsibly been tested before having sex with a new partner will not be tested by their doctor for herpes by default. Unfortunately, the IgG blood test can provide both false positives and false negatives. The culture test during an outbreak has been the most accurate in confirming herpes.

This book goes over what the transmission rates are for oral and genital HSV-1 and HSV-2 transmission and will put your mind at ease if you are taking appropriate precautions. Additionally, if your partner does have HSV-1 or 2, the suppression treatments are highly effective.

I found out this year that I have culture-confirmed genital HSV-1. All of my prior partners have tested clean, and no one had a history of outbreaks. Even my IgG antibody blood test comes back negative. I had a very negative view of herpes before I read the book and fully understood the effects of it. It does not affect my day to day life at all, and I don't have constant outbreaks.
posted by msladygrey at 4:12 PM on January 21, 2018 [3 favorites]

Count me in as another person who's had oral herpes since childhood (no idea whether its HSV1 or HSV2, and the Canadian government has zero interest in paying for testing to find out which). It's mildly annoying when I have an outbreak, but Valaciclovir has been great for preventing cold sores from developing or shortening the typical healing time. It's had no significant impact on my life. No one has ever dumped me because of it - I always disclose and encourage my partners to do their own research on the subject.

I'm about to say some things that might freak you out at first: A recent Canadian study found that about 14% of the adult population has HSV2, and more than 90% of them don't know they're infected. The vast majority of adults have HSV1, and again they usually don't know it. This happens because most people don't have symptoms and transmission can occur without symptoms or blisters being present through a process known as "viral shedding".

The key point I hope you take away from this is that herpes has so little impact on most people's lives that they literally don't realize they have it.

Standard precaution would mean avoiding direct contact with infected areas when someone has an outbreak, and to be extra safe avoid sharing utensils & glassware during that time (for oral herpes). Viral shedding is highest just before, during and after an outbreak so avoiding contact for several days after the outbreak has healed is also reasonable. Condoms and dental dams for oral sex are a good idea at any time. For intercourse the female condom covers more area than a regular condom and so offers more protection. As a cis guy you have a lower risk of genital infection from unprotected intercourse than someone who has a vagina (not terribly relevant for you since you always use condoms, but I thought I'd mention it).

Best of luck treating your anxiety. I hope what I've said helps you be less anxious rather than more so.
posted by Secret Sparrow at 5:37 PM on January 21, 2018 [2 favorites]

I feel like the folks in this thread have done a really good job of covering the basics. I'm not a therapist, but I have 2 resources that helped me a lot and a lot of personal experience, so I thought I'd throw in my two cents.

I have dealt with my own issues with hypochondria and disease phobia, so I know this is difficult. When I think of a disease that scares me, I think of the worst case: I get the disease. Then I ask if that's actually so bad, if I can live with it. In many cases, the answer is yes. Worst case, you get herpes. It's not dangerous, it's really not that unpleasant, and it gets less invasive over time. There are WAY worse things.

But I know that logic sometimes doesn't make it better, so I'd recommend Cognitive Behavioral Therapy (not sure what kind you're working on). There are workbooks for this, too. It's important to change behaviors that cause cycles of anxiety, so it'd behoove you to stop googling, get off WebMD, and stop checking your genitals. Here's a book about health-related anxiety you might find helpful: It's Not All in Your Head: How Worrying about Your Health Could Be Making You Sick--and What You Can Do about It.

Here's my story: After a long and confusing diagnostic process, I was finally diagnosed with genital HSV-1 about 5-6 years ago. Social stigma about herpes is strong, omnipresent in media, and was totally initiated by the drug companies who introduced suppressive therapy under the premise that herpes is a big deal. Therefore, I fell into a 5-year spiral of self-punishment and shame about having contracted the virus. Eventually I got sick of feeling that way and started therapy, and I read this book: The Good News About the Bad News: Herpes: Everything You Need to Know.
I'd highly, highly recommend it. It's solid, "real-talk" education about the facts and really puts things into perspective.

After reading this book, I feel so much better about it. I'm no longer ashamed to tell a new partner about my status, and I no longer live under this lie that I don't deserve sexual gratification. You're going to get plenty of signals from the world that herpes is something to fear, so the work comes in deciding for yourself that it's not. It was such a relief to give myself permission to stop obsessing over it and to break free of the shame. I truly wish this freedom for you, because it's really not worth your time.
posted by Autumn Willow at 9:50 AM on January 22, 2018 [1 favorite]

I'm an epidemiologist. I've been sexually active for almost 25 years, am queer, and grew up with HIV/AIDS as a backdrop. Something you need to hear: you're being too diligent with your knowledge and ignoring the likelihood and relative risk of a very specific diagnosis.

The great and commendable part of your story is that you've been willing to stay in touch with your doctor(s). So many people feel too uncomfortable to talk to their doctor about their sexual routine, and that is a very real problem. Keep that up! This is an anxiety that you're managing, not an epidemic of guaranteed illness. That epidemic doesn't exist.

As a coda, there are very few sexually transmitted illnesses that aren't very functionally treatable. Perhaps you would find some therapeutic value in joining a sexual health forum online where you can talk with people who are living with herpes so you can take in some personal stories about how little of an issue it is? I have an inflammatory disorder and I do the same thing--talking in a forum of other people with the same disorder absolutely keeps me grounded when my worries get the best of me.
posted by late afternoon dreaming hotel at 3:32 PM on January 22, 2018

These "instances" are followed by days of panic and near constant trips to the bathroom to inspect my genitals, noticing "red spots" or "bumps" that could be herpes, as well as endless google image searches so I can prove to myself I know what I am looking for.

So yeah, I have had more or less this exact obsession, right down to the image search. One therapist I had said he actually had seen more people worried about getting herpes than people obsessing about getting HIV... which in one way makes no sense and in another way makes perfect sense.

Anyway, I don't know if you'll find this helpful because brains work differently, but at one point, after having yet another "outbreak" debunked, I said in frustration to my extremely patient doctor "but how do I know what to look for?" And she turned to me and said, gently but firmly, "don't look." For some reason that clicked something in my head, where I was able for the first time to see this type of self-scrutiny as something unnecessary I was choosing to do.

The other piece that I didn't put together until later is that exactly as praemunire said, every time I did more research or got in there with a hand mirror and a flashlight, I was actually feeding the obsession by making it even more salient in my mind and training my brain to care about it. The problem is not herpes but the obsessing, and the way to treat it is to progressively cut out more of the compulsions that you do in an attempt to get rid of the anxiety and resolve the uncertainty -- stuff like reassurance seeking, checking, endless repetitive internet searches (how many times have I re-read the same risk charts that I could basically recite them word for word?!), etc.

I know I talk about Mark Freeman all the time on AskMe but his videos/blog were a game changer for me in terms of how I thought about my anxious thoughts and my responses to them. He is not a therapist, but is someone who was able to recover from OCD and GAD, and has some great first-hand perspectives on both conditions as a result. Regardless of what label you put on this particular species of anxiety, I think you may find some helpful resources there.
posted by en forme de poire at 1:35 AM on January 24, 2018 [2 favorites]

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