What’s New

Support – Now on Zoom!

Let’s try something new – with COVID putting a halt on in-person support/events, we’re starting an online support group meeting via Zoom. We’ll meet regularly; every 3rd Tuesday of the month @ 6pm. Each meeting will be limited to 30 minutes and will be open to all.

The first meeting is scheduled for Tuesday, January 19th. See details below.

Join Zoom Meeting

***Results are in!***

We had 44 participates – almost half said they’re looking for social events. 🙂 Our “likes” on Facebook may not reflect it, but we have had hundreds of people reach out looking for support. We will post more information shortly on the programs and events we will be hosting. Thank you everyone for helping us provide better services to the people in the Central Iowa area!!

HSV Facts #4: Herpes isn’t included on a standard STD test.

HSV Facts 4


We’ve all had the conversation. Aaaaaand it’s definitely an awkward one to have. I’m not sure about you but, every time I’ve had this conversation it goes the same…

“Are you clean?”

“Yeah, I’ve been tested for everything.”

I’d say most people would trust this as an sufficient answer…. but is it really?? What does that even mean? “Everything?” Like, has this person been tested consistently? When was their last sexual partner? Do they get tested after every new partner? What test did they get? Can I see the results?

My poor head is spinning….. don’t even get me started on the whole “Are you clean?” thing.

It is your job to be proactive about your sexual health!!! Ask the awkward questions. Do yourself a favor. It’s better to be proactive than reactive. Especially when it comes to your body. Take it from me. 

HSV is NOT INCLUDED on a standard STD panel. Ask your doctors. I’m not lying. Want to know why??? Here’s the kicker – it’s not included because herpes is “too common”. Almost everyone would test positive! At least, that’s what my doctor told me. Too freaking common???? What kind of crap is that? Ugh…. It grinds my gears!

Anywho, rant over. Just ask your doctor to be tested for HSV. There are two ways to test. Swab and blood. Yes, there’s a blood test!! 🙂 Click this link if you want to learn more about the different tests and how they work.

HSV Facts #3: You can’t get herpes from a toilet seat.

HSV Facts_ #3.png

The herpes virus is quite fragile. HSV does not survive outside the body for more than about 10 seconds, and although it can survive for slightly longer in warm, damp conditions, it dies very quickly once exposed to the air. Transmission through inanimate objects such as toilet seats has not been documented. However, exercising good hygiene is always a good idea!

The herpes virus can be killed with soap and water.



HSV Facts #2: You can get herpes from oral sex.

Yes, we said it! You can get herpes from oral sex. (Even if your partner isn’t in an outbreak!)

Herpes is a tricky virus. HSV1 and HSV2 can be found both genitally and orally. People can have both at the same time in one or both locations.


Here’s some stats and facts from Herpes.com!

What if your partner has genital HSV-2 and you perform oral sex on him or her? Will you get HSV- 2 in the mouth? Given the widespread practice of oral sex (some three-quarters of all adults practice it, according to The Social Organization of Sexuality, 1994) and the prevalence of genital HSV-2 infection, you might expect oral HSV-2 to be relatively common. It’s not.

According to one study, almost 100% of recognizable HSV-2 infection is genital (Nahmias, Scandinavian Journal of Infectious Diseases Supplement, 1990). One reason is that most adults are already infected with HSV-1 orally, which provides some immunity against infection with HSV 2. Another reason is that oral HSV-2 rarely reactivates, so even if an infection does exist, no one knows.

So far we’ve been talking about transmission of HSV-1 or 2 from its site of preference. What about transmission from another site? Say you acquire genital HSV-1 through oral sex. Can you spread the virus to a partner through genital sex?

The answer is yes, but probably not as easily as it was spread through oral sex. The main reason is that the virus reactivates and sheds less often outside its site of preference. Only about one quarter of people with genital HSV- 1 shed virus at all in the absence of symptoms, while 55% of people with HSV-2 do (Wald, New England Journal of Medicine, 1995). “Shedding data appear to parallel recurrence data, meaning that people who have a lot of recurrences also have a lot of shedding,” says Wald.

While HSV- 1 can be spread from genitals to genitals, “we think it is spread more easily through oral sex because HSV-1 reactivates more frequently in the oral area,” says Wald. However, she warns, “transmission of genital HSV-1 during asymptomatic shedding has been documented.” In other words, genital HSV-1 can be spread through genital sex, even when there are no symptoms.

HSV Facts: #1 – Condoms don’t always protect against herpes.

It is estimated that 90% of American adults acquire some type of HSV in their lifetime. It’s also estimated that of that 90%; over 80% have never shown symptoms! These people can unknowingly spread the infection.

Without using any protection, transmission for female to male is about 4%; male to female, about 10%. Other than abstinence, condoms and daily suppression have been proven very effective. With condoms reducing around 30% and a daily suppression routine reducing about 50%.

Genital herpes can be found anywhere within the boxer region. Meaning transmission is possible if every precaution is taken. (Even if the person has never shown signs or symptoms)

There are many couples where one person has herpes and the other doesn’t. They are typically aware of the risk they are taking. However, for those who are single and have multiple partners- it’s extremely difficult to be fully protected.

Get tested & don’t forget to specifically ask for the IGG blood test to test for herpes antibodies. Herpes is NOT included on a regular STD panel. It’s up to YOU to ensure your health. Don’t be afraid if your test may come out positive. The result is still the same whether you know it or not. You may be unknowingly spreading HSV.

It’s important to know your partner(s) and always have “the talk” before initiating sexual contact. If a potential partner claims to be “clean” double check if they’ve had the blood test for HSV. Remember – most people are unaware they have it!



Stigma & Me: Meeting Notes

In last weeks support meeting, we discussed stigma with HSV. We shared stories about times where we’ve seen or heard others stigmatize HSV. (Even how we may have perpetuated stigma before we were diagnosed)

We discussed the commonality of HSV and questioned the separation of the medical community and the common public. HSV is not included in a standard STD panel. Most of us are told it’s because it’s too common. Because of the prevalence of “cold sores”, it’s difficult to pin down exactly how many people have HSV.

The CDC (Center for Disease Control) only perpetuates this by not tracking HSV as they do other with other STD’s. We want to know their reasoning as to why this is not tracked!

The frustration we share…. if it is so common… why is there still stigma? Why are cold sores acceptable but having the same virus downstairs is unacceptable?

We exchanged ideas on how can we end the stigma.

  1. Making it widely known and accepted cold sores are herpes.
  2. Writing the CDC and local doctors urging them to report instances HSV.
  3. Create a campaign advocating HSV be included on a regular STD panel.
  4. Urge people to get tested- even if they aren’t showing symptoms. HSV can be spread even if they’ve never had an outbreak. This can only be diagnosed through blood testing!
  5. Contacting local schools and health departments insisting they teach children facts on HSV rather than using scare tactics and abstinence. (HSV can be spread when using condoms. Cold sores, HSV, can spread to the genital areas through oral sex.)

These are all things we can do anonymously. Through the internet- anything is possible. We can be protected with private profiles while still spreading the word. There are a few brave souls who have gone transparent but it is not necessary for the truth to come out.

Support Meeting Today- “Stigma & Me” 

Today’s Topic: “Stigma & Me” 

This week we will explore the stigma that comes with HSV- why is it taboo when it’s so common? How did we get here and can we change it?!

Why is it we feel so alone when first diagnosed? When most of the population has a form of HSV? Stigma, y’all! It’s something almost everyone has and refuses to discuss. It’s up to us to stomp it out!

People hide behind terms like “cold sores” and “canker sores”. We all know what’s on your face, Karen!!!

See you tonight!

We’ve partnered with the Polk County Health Department to provide an in-person herpes support group. The group will meet regularly; every 3rd Tuesday of the month @ 6pm. Hope to see you there!