Did you know that herpes symptoms in women can be confused with many common conditions? 85% of people with herpes don’t know they have it! Common symptoms include blisters, sores, itchy areas, tingling, burning, painful urination, skin fissures and cracks, skin ulcers, swollen lymph nodes, fatigue, depression, pain down the leg, flu like symptoms, body aches and watery vaginal discharge; but how do you know if it is herpes? I have worked with women who were misdiagnosed with several other ailments before they were ever PROPERLY diagnosed with herpes.
Why does this happen?
Herpes is truly the Great Masquerader. Doctors and patients alike misdiagnose herpes all the time. Here is a chart of what women with herpes think they have and what men with herpes think they have.
What Women With Herpes Think They Have
What Men With Herpes Think They Have
Urinary Tract Infection
Insect or Spider Bite
Allergy to condoms, spermicides, sperm, elastic/pantyhose
Allergies to condoms
Irritation from bike seat, shaving, douching
Irritation from bike seat, tight jeans, sexual intercourse
As you can see, it would be very easy to misdiagnosis herpes in women AND men. So, if you have any or many of these symptoms, especially if they are reoccurring, I suggest that you seek medical advice. You have to take control of your health and sometimes it means challenging your doctor’s diagnosis. There have been times when I have encouraged women to demand a herpes blood test. Not knowing can drive you crazy! A simple blood test paired with a thorough exam can determine your herpes status. You can find a herpes testing center near you. I also recommend getting screened for other STI’s.
If you end up testing positive for herpes, Pink Tent (TM) is here it support you. We are committed to educate, empower and inspire women with herpes to live, love and thrive. If you reside in the Boulder/Denver area, check our www.ColoradoHFriends.com. We host monthly discussion groups, social events and women’s brunches. Take a stand for your health and get tested!
Living A Normal Life With Herpes – PopSugar Featuring Dr. Kelly
It’s so exciting when I find new articles about herpes popping up all over the internet, especially when they are found in popular sources such as Glamour, Women’s Health and the Huffington Post.
It indicates that people are finally talking about herpes and opening up a dialogue. This dirty little secret that no one wanted to talk about years ago is now being brought out of the shadows and into the light.
My years of work within the herpes community has been focused on having women share their story as the first step towards breaking free from the internal shame and pain a diagnosis can cause. Now women all over the world are not only sharing their stories online, they are actively joining in on an even bigger conversation about what it means to have the virus.
Even though women with herpes can’t be contestants on The Bachelor, it is my vision that this movement of de-stigmatizing herpes will help women break free of the shame and reclaim their health and happiness.
Please check out the article, and write me any questions you may have in the comments below!
Live, Love, Thrive,
Want to bring more light into your life? Get your copy of my Amazon Best Seller, “Live, Love, & Thrive With Herpes” and boost your self-esteem and self-confidence!
A Partner’s Perspective On Herpes- Richard’s Story
Contributing Author- Richard Schuh
I am the luckiest man alive. I have the good fortune to wake up every morning to see, and be, with my wife Kelly. You may know her as Dr. Kelly Martin Schuh. Yes, the herpes doctor.
I’m so proud of her for so many reasons. Number one, because she made the choice (with my support) to not hide behind a pen name when she wrote her book. Why? Because she has nothing to be ashamed of and it would be inauthentic to her message.
If you have read her book, Kelly contracted the herpes virus in a manor that most people don’t realize is even possible. Another reason I’m so proud of her is because she did not let this one event define or confine her life.
Kelly said to me one day, “I wish there was a community of women supporting women with herpes.” As Oprah would say- “An aha moment”
That’s how pinktent.com was born. I’m so proud & inspired by her courage, strength and grace in giving women worldwide a safe place to find community, education and inspiration around a very difficult subject.
My wife is uniquely qualified to be the accidental expert. She is a woman, doctor and carrier of the H virus. Yes, my wife has herpes. The entire world knows. Who cares! And guess what? Much of the world’s population also has herpes and 85% don’t know it. This is wrong. I call it a crisis. If a woman is sexually active, she needs to know the facts about herpes. Why? Because 1 in 6 men and 1 in 4 women in her potential dating pool has it!
News flash:Guys are clueless. They think it’s a rash or jock itch. How many guys do you think are going to voluntarily go into a doctor’s office for anything? Much less an STD test. Ladies, it’s up to you as a community of women to have these conversations with the women in your life about the prevalence of herpes. Guys certainly are not going to do it. H does not discriminate. It effects us all equally and has no regard to our race, class, age or education.
Herpes is everywhere. It is a part of a family of viruses that are so common. Those Blistex commercials on TV? Cold sores. What are cold sores? HSV-1 or type one herpes simplex virus, the same virus that can cause genital herpes. Does the commercial mention herpes? No. Those commercials for shingles? Once again, a member of the herpes family of viruses known as herpes zoster. Have you ever had chicken pox? It’s a form of the herpes virus known as herpes varicella. You are not alone. Why are women not having these conversations? Guys certainly are not.
People want to know how I felt when Kelly told me. Let me be clear. I was blown away. I was blown away by her integrity to tell me before we made love for the first time. I was blown away by how calm she was. It was a Sunday night and we just had an awesome day together. We had talked about a wide range of things all day long. We had been dating for about a month and we were talking about our first road trip to Sante Fe, New Mexico.
She eased into it by telling me she loved me. I had already told her first and we talked about how well everything was going. She asked as many questions as I did on a wide range of subjects before she told me, so it was very much a two way conversation.
Tip: Never tell a dude “We need to talk”
How did she tell me? Kelly asked me for confidentiality. She told me she cared enough about me to tell me- “I have herpes”. If I could describe my reaction, it would have been one word. Shocked. I knew she was not promiscuous. She told me how it happened and then said “this is what you need to know…”. She gave me the facts and the rates on transmission as calm as could be.
I was shocked to learn how hard it would be for her to pass herpes on to me with the right precautions. Kelly told me how herpes has no cure, but that she had learned how to very effectively manage her symptoms. It really came down to that if she had an outbreak that I would be the first one to know and that we would simply abstain till it passed. I looked at it as no different that her menses. Everything else would be normal; and it was and still is.
Kelly asked me if I had ever been tested for STD’s and I had. I had just moved to Boulder and my doctor just did a full panel of blood work. I learned later herpes is not included in a standard STD blood panel. The why to that one is total babaganoush, but that’s another subject.
I was happy and healthy. Kelly said she wanted to move forward in our relationship, but from a place of full disclosure and integrity. She wanted and needed to tell me about her “health history”.
She gave me space for a day or two and I came to my own conclusion. I would have a 1-2% chance of getting this? I take greater risks in my business and everyday life! I loved this women and we had just established a level of emotional intimacy that I had never known before. We had opened up a level of communication where we could talk about anything, on any level, based on trust and respect. That’s a pretty good way to start a relationship in my book.
As I had revealed in her book, I had my own stuff. I had abused alcohol and had a drinking problem for years. I was two+ years sober when I met Kelly on March, 9th 2008. No treatment. No meetings. No story.
On January 1st, 2005, I didn’t know what I was going to do. I just knew what I was NOT going to do. I had one thing on my “Do not do list” – Don’t drink. Then I tried something I had never tried before. I gave myself permission to treat myself better than I had even done before. My first 6 months of sobriety was pure hell, but I kept moving forward. My silver lining was the life I had always imagined that I’m living now. I had made it through to the other side and I thank my lucky stars everyday.
I know Kelly would not have given the OLD ME the time of day. I might have gotten a coffee date, but that’s about it. I’m now in my 12th year of no alcohol, no prescription drugs and no sleeping pills (with one bump in the road). I choose sobriety. I don’t stay sober for anyone but myself. All I know for sure is, life is a whole lot easier.
I love this quote from one of my mentors- “People (especially guys) totally overestimate what they can do in a short amount of time. As well, we totally underestimate what we can do over a long period of time.” (10+ years) Tony Robbins.
Use this moment in time as an opportunity to reset your life. Don’t expect anything significant in a day, a month or a year. Where could you be in 5 or 10 years? How about 20!
I proposed to Kelly on my birthday, September 9th, six months to the day after I had met her. Our good friend David had set us up on a blind date. We were married the following summer on June 20th, 2009. All of our friends and family, plus the caterers, photographers and musicians said it was the most fun wedding they had ever been to. We got married in a light rain and then rocked the big tent with 85 of our best friends all night long.
Our daughter Maddie Piper was born the next year on July 5th, 2010. I’m the luckiest guy. I won the lottery- Twice.
So how does herpes effect our lives? It doesn’t. If Kelly has an outbreak we deal with it. How do you erase stigma? Talk about it.
For those of you who have read Live, Love, and Thrive with Herpes, you know how this story ends. Seven years ago after I was in a state of high stress from my business, I had a strange rash you-know-where. I asked Kelly what it was and she said instantly- “herpes.” My instant reaction was – no way!
Now I know the common assumption would be that Kelly gave it to me, but I had been having this same rash, in the same place, once or twice a year since college. I was actually able to trace it back to the person who probably gave it to me. Remember when I said guys are clueless? Count me in. I was never able to put 2+2 together. I have had herpes for over 30 years. I’m part of the 85% of people who have herpes, but did not know it.
In closing, Kelly is the smartest, healthiest and happiest women I have ever known. I’m a very lucky man. I get to be her husband. That road trip to Sante Fe? It was the best 3-day date ever. We’ve been together ever since that day. We will celebrate 8 years of marriage this June. Maddie, our daughter, will be 7 in July.
Sometimes our darkest moments in life can give us the greatest opportunities for growth. Kelly took her darkest moment and made the choice to light it up with the brightest light to create the real cure for herpes. Community.
Hello Ladies! I am so excited to share with you that my exclusive Secrets to Success: Foundations Course is now open for registration for the next few days only!
While some women are just sick and tired of being sick and tired (these are the women registered and going though the course right now), I know that there are some of you who are fearful to say YES.
You are sitting on the fence on this one. You tell yourself that you’ll figure it out…SOMEDAY
Or wait until that partner comes knocking to figure out how to have the talk.
How do I know this?
Because I have worked with women from around the world with H. Not having an outbreak today? Not dating anyone? Feeling okay today?
Then for today, you might be able to cover up your PAIN and SHAME. But eventually it WILL resurface. And when it does, you will regret not giving yourself the EDUCATION and TRANSFORMATION you deserve.
While this course is NOT for women who are unwilling to learn and grow, this IS for women who are ready to conquer this diagnosis and once and for all feel EMPOWERED, PEACEFUL, and PASSIONATE again.
This course is only offered about twice a year and includes 4 live calls with me, access to the private Facebook group full of other women to support you, as well as a ton of bonus material that you can work on at your own pace! You will receive lifetime access to the course materials, so you can go back to it time and again. By registering today, you have instant access the the virtual course (live calls start March 12th).
Everything can be done in the privacy of your own home as you can choose to remain as anonymous as you want. There will be no mention of H on invoices and nothing will be snail mailed to you.
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One of the most universal recommendations specific to the management of herpes is to be mindful of the two amino acids arginine and lysine in your diet. Herpes outbreaks and many other chronic viruses are triggered by high amounts of arginine.
Arginine feeds herpes and encourages its growth and reproduction.
Lysine, on the other hand, boosts immunity and offers up protection from future outbreaks.
To sum it up….
Lysine is your FRIEND
Arginine is your ENEMY
Ideally, you want to decrease the foods that are high in arginine and increase the foods that are high in lysine.
A great tool for determining the lysine and arginine content of food is to use the lysine/arginine ratio. Foods that are high on the lysine/arginine ratio are more beneficial for a person who suffers from herpes.
What foods are high in Lysine?
Most Vegetables and fruits
Dairy-based products including cheese, milk, and yogurt
Fish, Chicken, Lamb, and Beef
What foods are high in Arginine?
All nuts and nut products
Nut butters (peanut butter, almond butter etc.)
Seeds (except hemp and flax)
Whole Wheat and White flour
Dried beans including soybeans and tofu
Protein shakes, multivitamins and bodybuilding supplements that contain arginine
The above food recommendations are meant to point you in the right direction towards managing your outbreaks and living a vibrant, healthy life. As discussed, there are many known triggers when it comes to herpes and certain foods.
Each person with herpes is unique in their body and what things trigger a herpes outbreak. For those who are sensitive to foods, I highly recommend a Paleo style diet.
Environmental Herpes Triggers
Herpes prefers to live in warm, moist environments with lots of friction. As such, here are a few quick tips to decrease your potential triggers
Avoid hot environments like hot tubs and saunas
Use padding in bike shorts to decrease friction when biking
Avoid thongs, as they can be irritating. Opt for organic cotton panties
Do not stay in wet clothing too long after working out.
When I was first diagnosed with herpes, I feverishly researched everything I could about managing herpes and herpes treatment. I was shocked at how much misinformation and myths were out there. It seemed like everywhere I turned there were false promises of a herpes cure. I was confused, overwhelmed and felt quite vulnerable.
In the beginning, I fell for scams in hopes of eradicating herpes from my body. Over the years, I spent tiring hours attempting to find the magic bullet, only to find my pocketbook dwindling and my hopes diminishing.
I spent thousands of dollars with acupuncturists, Ayurvedic practitioners, Qi Gong masters, pills, salves, psychics, Reiki masters, tonics and website scams hoping to cure the incurable.
Let me speak clearly- There is NO cure for herpes.
AND….some “cures” found online can actually harm you!
The Good News About The Bad News: Herpes Treatment
While there is no cure, women from around the world are managing their herpes symptoms using a combination of natural remedies and/or pharmaceuticals.
The herpes virus can be treated either topically or internally. Most pharmaceuticals (Valtrex, Acyclovir etc.) and natural remedies work by decreasing the replication of the virus. The less power the virus has to replicate, the weaker its power to create an active infection.
Suppressive Vs. Episodic Herpes Treatment
Some women use suppressive or daily therapy while others use episodic.
When the virus is not active at the surface of the skin and symptoms are not present, the virus considered to be dormant in the body.
During these dormant phases, some women choose to use a natural or pharmaceutical antiviral as a preventative measure for decreasing transmission and decreasing potential reoccurrences. This is considered daily or suppressive treatment.
This differs from episodic treatment in which a person only uses antivirals when symptoms are present.
The potential downside of using pharmaceutical antivirals on a daily basis is that some people have side effects when using the drugs, some people develop a resistance to the drugs and finally, the drugs can be hard on the liver and kidneys over time.
No matter which herpes treatment you choose, life with herpes can be managed.
Every healthcare provider would agree that the best defense against the herpes virus is a strong immune system.
Adequate sleep, a proper diet, regular exercise, stress management, avoiding known herpes triggers and supplements specific to the herpes virus are some of the key tools to support a strong immune system.
What The #ImWithHerpes Campaign Told Me About Our Community
CONTRIBUTING AUTHOR: STEPHANIE
I was working in my office when my boyfriend came to me excitedly asking if I had seen the new “I’m with herpes” hashtag. As a twitter advocate he is usually the one keeping me in the loop in regards to what is currently trending on twitter. We are both sociologists so of course we saw this as a glimpse into various social issues and immediately started looking at the tweets conversing with #imwithherpes.
I was proud to tell my boyfriend that I knew of the author and had read her pieces before. After all, Ella Dawson is the one who told us why we should love telling people that we have herpes.
For those of you who are not familiar with this story, I will bring you back to the beginning. It all started when Ella Dawson received a letter from Hillary Clinton thanking her for the bravery she has shown in her fight against herpes stigma. Dawson posted a piece—including a picture of the letter from Clinton—on her website celebrating the fact that her bravery was acknowledged by a presidential candidate. As soon as this news hit social media the backlash was almost instant. By the time the hashtag was brought to my attention it had only been a couple of days since Dawson’s piece about the letter was posted, and already plenty of negative articles and tweets had been posted.
Some of the awful comments that were posted publicly about Dawson made my jaw drop. I had forgotten how ignorant and hurtful people could be about herpes and STIs in general. I had recently started disclosing more casually to friends and acquaintances, and the reactions I had gotten were nothing like what I was seeing in response to Dawson’s piece. This was confusing because I had found love and acceptance surrounding my disclosures, but found the exact opposite in response to Dawson’s piece. Not only was she receiving potentially more harassment than the usual cyber bullying she experiences, but Clinton was now being “accused” of having herpes.
There are so many problematic pieces to this story, but I am going to stick to the piece that shows how Americans feel about potentially having a president with an STI. Of course we all have our political differences, and many people opposed Clinton regardless of if they thought she had herpes or not; but I felt this hashtag was created to hurt Clinton’s campaign. This told me that there is much less tolerance and acceptance for our community than I wanted to realize.
This whole fiasco died down much faster than I expected, but for those few days it was not uncommon to see pictures of the presidential candidate with #imwithherpes under them. It was also not uncommon to see hateful words thrown at Dawson for being what some people called overly proud of her herpes diagnosis. What this whole experience taught me is that we have a ways to go until we live in a place that no longer sees a herpes diagnosis as (insert rude comment here), but the way that we get there is together.
I thought of my Pink Tent community during this time and how I was so thankful I had found you all. We must continue to lift each other up when others try to tear us down. If you aren’t one to publicly shout your diagnosis, that’s okay! If you want to be there one day, I assure you that you will get there, and until then there are plenty of us willing to advocate for our entire community to help combat the stigma that some of us face on a daily basis.
About The Author: Hi Everyone! My name is Stephanie. I was diagnosed with HSV-2 in April of 2014 when I was 22 years old. Right now, almost three years later, I am a doctoral student in the sociology department at Purdue University. I recently completed my MA in sociology at the University of Northern Colorado where I explored the role of stigma in the process of disclosing a genital herpes diagnosis. With that said, if anyone is interested in reading what I discovered in my project, I am happy to share that with you! I plan to continue advocating for our community, as well as studying the social factors that influence sexual health in order to understand how we can create a world that is easier for people diagnosed with STIs. I really enjoy writing for the Pink Tent community and am excited to be able to share some of my experiences and thoughts about living with genital herpes with you all.
With all of the social stigmas surrounding herpes, it’s hard to distinguish what the facts truly are about the herpes virus. This video is a great herpes 101 resource to clear up some common misconceptions. I encourage you to watch it and comment your thoughts below!
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What do you do when your herpes test results are inconclusive or confusing?
After working within the herpes community for many years, this question is more common than one would think. Let’s review some of the most common scenarios and the appropriate interpretations of these results.
Scenario A: Patient presents with itching, redness and a few “bumps” in the genital region.
Testing: Culture of “bumps”, DNA testing and Type Specific IgG Blood Testing for HSV-1 and HSV-2 Results: Tests come up negative for all of the above. Interpretation: This could indicate that the “bumps” were caused by something other than HSV or that the results indicate a “false negative.” This scenario would warrant a re-test. Sometimes there is not enough virus in a lesion for the test to accurately come back positive. This often happens when a lesion is in the process of healing or if the lesion is the result of a recurring infection. If this is a recently exposed individual, then it would take some time for the body to build up antibodies to the virus. If future blood tests come back positive for HSV-1, HSV-2 or both, then this would most probably indicate a new herpes infection. It can take up to 6 months from exposure for a blood test to come back positive for those individuals who are infected.
Scenario B: Patient presents with some redness and itching in the genital region. No lesions are present. Testing: Type Specific IgG Blood Testing for HSV-1 and HSV-2 Results: A low positive for HSV-2 Interpretation: This would indicate that the patient might have been exposed to herpes, but future testing would be required. If future blood testing came back again as a low positive, I would recommend a Western Blot Test, a more expensive and yet more accurate test for HSV.
Scenario C: Patient presents with no known genital symptoms, but does have a history of cold sores. Testing: Type Specific IgG Blood Testing for HSV-1 and HSV-2 Results: HSV-1 positive and negative for HSV-2 Interpretation: The positive test result for HSV-1 is not surprising since the patient reported a history of cold sores. Cold sores are caused by the HSV-1 virus. Unfortunately, a patient such as this can not rule out genital herpes, since 85% of the population has genital herpes and does not know it. A blood test can determine the presence of the virus, but it does not indicate the location of the virus in the body.
These are just a few of the many scenarios that people find themselves in when they are reviewing their herpes test results. While index values less than 1.1 should be considered negative and those greater than 3.5 should be considered positive, what about all those numbers in between?
According to the literature, the Gold Standard for herpes testing is a test called the Western Blot. Due to the expense of this test, it is not not routinely performed as a primary screening for herpes. Where this test shines is in its accuracy.
The Westover Heights Clinic is currently offering free herpes testing for those individuals interested in a clinical study. If you find yourself in a scenario where your results are inconclusive, a Western Blot test might be a great next step for you.
As with all of the blood tests for herpes, the results will indicate the presence or absence of the herpes virus, but it will not indicate the location of the virus.
Have more questions? Join us on our next live call with Dr. Kelly!
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Herpes in Women
Q: What is herpes?
A: Herpes is a group of viruses that affects the skin or nervous system.
Q: What are the symptoms of herpes?
A: There are a number of symptoms that can occur with a herpes outbreak. The classic presentation follows a course of progression that often begins with a tingling feeling, also known as a prodrome,
1- followed by an irritation or redness on the skin
2- Within a short period of time, tiny fluid-filled blisters appear at the site
3- They are often painful and itchy. These blisters then begin to ooze, and the site becomes crusted over
4- When the blisters burst, an ulcer or depression Occurs
5- A scab begins to form
6- Generally, it takes two days to two weeks for the wound to heal.
Q: How is herpes transmitted?
A: Herpes has three modes of transmission
Intimate Contact (horizontal transmission): usually kissing or sexual contact (oral or genital)
Autoinoculation: transmission from one area of the body to another
Congenital (vertical transmission): present at birth, passed from mother to newborn
Herpes is an infection that most commonly is spread by skin-to-skin contact, at a site where there is friction, a mucous membrane, or a break in the integrity of the skin. Herpes likes moist, warm, dark places and is killed pretty rapidly outside of the body. It is a parasite and as such needs a host to survive. During an outbreak, it is important to refrain from intimate contact. Proper hand washing with soap and water will kill the virus, so there is no need to obsess with hand washing every five minutes. As a precaution, it is also advised to properly clean any sex toys after use.
Q: What is the prevalence of women with genital herpes in the US?
A: The statistics differ depending on what study you read, but in general it is safe to say that at least 1 in 4 or 25% of American women have HSV2 genital herpes. (That doesn’t even account for HSV1 genital herpes! I have yet to find THAT statistic.)
Q: Is there a cure for herpes?
A: At the present time, there is no cure for herpes. The virus can be managed effectively with all natural and/or pharmaceutical treatments.
Q: How do I protect my partner if I have herpes?
A: According to a University of Washington study, “simply avoiding sexual contact during the active phases of the infection provides enough protection for more than 95 percent of susceptible men and more than 81 percent of susceptible women per year.” The best way to protect your partner is to abstain from sexual contact during any active symptoms and to use a protective barrier like a condom or oral dam.
Q: I am overwhelmed by the testing options. What is your advice?
A: The most important thing regarding testing is to make sure you are getting a type-specific test. A type-specific test is one that identifies whether or not you have type 1 (HSV-1) or type 2 (HSV-2) herpes.
Q: If I don’t have symptoms, can I still transmit the virus to my partner?
A: Yes. There is always a risk of asymptomatic shedding. This is when you don’t have symptoms, but you still could transmit the virus.
 Fujie Xu, MD, PhD; Maya R. Sternberg, PhD; Benny J. Kottiri, PhD; Geraldine M. McQuillan, PhD; Francis K. Lee, PhD; Andre J. Nahmias, MD; Stuart M. Berman, MD, ScM; Lauri E. Markowitz, MD, “Trends in Herpes Simplex Virus Type 1 and Type 2 Seroprevalence in the United States,” JAMA 296(8): 964–973, doi: 10.1001/jama.296.8.9642006.
 Sacks, Stephen L., MD. The Truth About Herpes. Gordon Soules Book Publishers Ltd., 1997
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