Sexual Health Buzz

OK, here’s the skinny. I am turning 38 years old this year. I was diagnosed with herpes when I was just 20 years old. I remember the day vividly. I came from the doctor and went back to work hysterical. I remember my bosses wife telling me nothing could be that bad, and that 10 years from now whatever it was wouldn’t even matter. “Yeah, right,” I thought. “You have no idea that 100 years from now it will still matter.”I had been dating a guy that had what I know now was a cold sore. I had never had one in my life, or even knew what it was. Certainly had no idea it was herpes or even contagious. I asked him what was on his lip and he responded “I was hit in the lip with a football”. I was young and naive, in love (or infatuation) and had no reason to question his answer. Little did I know that his lie would change my life forever.

Three days later my lip was swollen like a huge football. It was blister upon blister. To make matters worse about 3 weeks later I had the common “burning” sensation downtown. I immediately went to Planned Parenthood who confirmed I now had genital herpes as well. It seemed somehow, I had spread the oral outbreak to myself genitally, or perhaps through oral sex, I will never really know for sure.

For years I was in denial. Perhaps they made a mistake. It was likely an ingrown hair….I wished. All though there after, I always did use protection when having sex, just in case, I never disclosed to anyone that I had been diagnosed. Years ago it was thought you could only spread herpes through unprotected sex, or when you had an outbreak. I just made excuses for not having sex if I had any suspicion of an outbreak and thought that was enough to insure my partners safety and I would save myself the embarrassment (or rejection) of telling them. Don’t judge me, being older and wiser, I do feel a lot of guilt about that now.

I finally met someone that I instantly knew was going to be a significant person in my life. Despite the fact I wanted to be in denial I knew I had to tell him. I did, I had to cowardly write it in a letter, and was shocked that he still wanted to be with me once he read it (hey I was only 25!). We ended up having a child together and have been together for 12 years.

We are now dissolving our relationship (herpes never really had a whole lot to do with our relationship). Not because of herpes, but because we just grew out of each other.

The thought of dating again and having to reveal my secret petrifies me. I ran across this website in hopes of finding some inspiration since even though I have faced that I have it, I am still not completely comfortable sharing it with others openly, especially not new prospective partners. I have been reading on how to tell someone and what to expect their reaction to be.

I have been a little shocked at some of the stories I have read on this website. I am so sad at all the young women who feel they are doomed, or have to reach for strength to go forward, or even feel suicidal. I remember feeling that way. I found myself wondering about these women’s relationships. Part of why I stayed with my partner for years longer than it was working out, was that the idea having to disclose to a new potential partner my aliment was far to hurtful to imagine rejection. I myself have realized that having herpes doesn’t make it OK to stay with someone just because they accept that small inconvenience of your being. That is what I want to voice.

On the bright side, I can testify that I have encountered numerous people that have confided in me that they as well have herpes, not even knowing that I myself have it. I am speaking of beautiful, gorgeous people, inside and out. People should really know they are not alone. Of course that is what we are searching to verify on this website.

The irony of my finding this site for inspiration is that I didn’t find inspiration through your stories. For the most part I was saddened by the lack of self esteem of many and wanted to scream “Hey, this sucks, but it is not the end of the world!”. I didn’t even know I felt this way until reading the logs. I felt compelled to shout inspiration from my own story and am willing to share with you my experience (something I have never been open about) and hope that it will inspire others to feel less alone and less ashamed.

From what I have read 1 out of 4 people have genital herpes. 80% of America has oral herpes. We are not alone, just a lot of other sexually active people in denial. Chances are your new potential partner, knowingly or not has all ready slept with someone with herpes. You dodge the bullet, or you don’t. Non the less every sexual active person in the world has played Russian roulette.

I am still hoping to find the log that details someone’s experiences divulging the big “H” to new romantic interests. However, I have concluded that this is not the end of the world, not the biggest deal ever and we should feel beautiful, happy and proud of who we are. Having herpes does not define who we are, it is just a minor sexual inconvenience. In fact it may be a blessing in disguise. It can only eliminate who just sees our superficial self. Anyone who can view our soul will want and appreciate us.

In an ironic twist, it may lead us to the true love we never knew we deserved, or would have found without allowing someone to love us despite a minor inconvenience.

In closing..

You can’t love someone else until you love yourself!

Rachael

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This story was sent to me so that I could repost it to share with you on my herpes stories pages… I thought it would be nice to switch things up a bit and post a few true stories on my herpes blog so my readers could find them this way too. If you would like me to post your story please send them to me as I would be more than happy to. You are more than welcome to share a photo and if you prefer to remain anonymous that is fine too… we can just go by your first name only. Ok, this next story now begins…

I have had the herpes simplex virus type 1 cold sore since 2002. Being that type 2 is genital herpes I thought that was the only type of herpes that could be contracted from sex including oral..I was wrong. My ex boyfriend had cold sores on his mouth and without knowing he had them at the time, we had oral sex and that is how I got the disease. I didn’t know it at first. It was a few years ago so I can’t remember all of the symptoms. I just remember a burning and itching feeling down there as well as very bad chills and a fever. I went in to see the gyno and she diagnosed me with herpes type 1, vaginally.

I was devastated and depressed but I got over it quickly because I realized just how common this virus is! Then a year later I met my now husband and we got engaged a year after meeting. We planned our wedding for exactly a year from when he proposed. We then got pregnant and I was ecstatic. This was our first little bundle of joy and we were sooo happy!

Well being the worry wart that I am, that led me to think about neonatal herpes. I was aware of it from doing research on the Internet. I told my gyno. at every visit how worried I was and expressed my concerns. They blew off my concerns with “Oh don’t worry, neonatal herpes is very rare” and that was that. Even though I stated time and time again I wanted a C-section because I heard the baby would have a very very low chance of acquiring the disease if I had the baby via cesarean.

Well about a month before I delivered, the gyno prescribed Valtrex. I thought she prescribed Acyclovir which is a more mild form of the anti-viral med. So I went back a couple weeks later and she gave me an Acyclovir prescription. I took that medicine for 12 days up until the baby was born. I delivered vaginally per doctor’s advice, going against my gut instinct. Well I had NO SYMPTOMS of any herpes outbreak coming on. Truthfully, I even forgot about my whole worrying about the baby getting herpes when I was in labor. I remember the doctor telling me she was putting a fetal scalp monitor in me to monitor the baby’s heart rate I believe. But later on I read that if you have herpes DO NOT let the doctor use a fetal scalp monitor, because that punctures a little skin of the baby and the herpes virus could seep in.

Well, a week after we had our beautiful baby home I noticed a red bump on his leg that later turned into a blister. I honestly still didn’t think anything of it and took him to the doctor for his normal check up and I pointed out the blister and the doctor mentioned to me that she thought it was herpes. My heart sank at that point. All of the worrying before I had the baby came flooding back. It was like an ocean of worry that I had built up all 9 months of my pregnancy flooding me and knocking me down, when I heard those words: “I think it’s herpes”.

Without even having the blood work or any of the testing done I knew in my heart my baby had contracted the cold sore virus from me. We took him to the hospital and they did spinal taps on him and hooked him up to an IV. It was a nightmare I was living. To see my beautiful baby in a hospital, potentially dying or severe brain damage because of a disgusting disease picked up during sex. The thought of that just made me so sick- I felt the world was coming to an end for me..

My husband stood by me the whole time and was there standing strong for both me and him. Luckily he knew I had the cold sore virus and he knew how I always went to my gyno during my pregnancy scared shit. So although we were both scared and horrified, it wasn’t a guessing game as to how he got it. We stayed with our baby for 2 days before we got the results. They came back that he had HSV 1 skin eye mouth disease. So far the spinal taps came back negative- Thank God, I thank God every day. But at the same time he is now almost 5 months old and doctors say he could STILL get encephalitis or the herpes virus can come out and attack his organs. I am very angry at the gynecologists for not listening to my concerns. She should have never used a fetal scalp monitor on me, knowing that I had herpes. She was very careless with my baby and my body- I truly hate this person. To walk around with hatred is no good, but I have to worry every day about my baby’s disease..that could have been prevented provided I had good doctors looking after me.

This is a warning to all women who have herpes and want to or are pregnant. I don’t want other babies out there getting this virus. Please make sure if you choose to have a vaginal birth that the doctors don’t use a device called a fetal scalp monitor. Make sure you request herpes cultures to be taken during your last month of pregnancy to make sure that there is no viral shedding. The virus could be present with no symptoms, known as asymptomatic shedding. I think that is what I had at the time of delivery. It scares me to know that you can have the virus present at the time of delivery and not know it. The doctor can’t do a culture test at the time of delivery because it takes a few days to get the results back.

They say it’s rare for a baby to acquire the disease but it DOES happen. It happened to my baby. If you personally feel it is worth having a C-Section, because that reduces the risk of giving your baby neonatal herpes (There is still a change the baby can get the virus while he/she is in the womb..that is called in utero , meaning they acquired it in the uterus) please get the c- section. I know I will with my next. Although it is a very rare disease, it does happen. 1 in 3000 doesn’t seem like a lot, but if you are the 1 like I am out of the 3000, that ain’t nothing but a damn number. I think because neonatal herpes is so rare, doctors take a pregnant women having herpes lightly… and the consequences to that child are deadly.

Note from Angela:

Obviously I don’t agree that women with herpes should be forced to have C-sections. C-sections are major surgery and should only be used (in my opinion) as a last resort. Furthermore, a baby can not contract herpes while inside of Mom. A mother who has had herpes prior to becoming pregnant shares her antibodies with her unborn child. For those who have yet to read my herpes pregnancy story you can do so here…

I’m sure Laura shared her story as best she could but I’m also suspecting that there might be parts of her story she doesn’t understand. Even so… I went ahead and decided to go ahead and post it because after all… it’s her story to share. If you have read this story and would like to share your opinion as well, feel free to leave a comment.

Having herpes when you’re pregnant

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I’ve been diagnosed just for 4 months. My “donor” knew he had it and chose not to disclose. So, from the betrayal and my new dx, I have done the crying, feeling undateable, unlovable, angry and betrayed phase.

But, kept my faith in God. It was trying at times, but still there.

I know that rejection is hard. But, I feel as I’ve been told by Angela and Libby that not everyone will respond that way. You don’t have to settle. And, so, I haven’t. I was told that I would be laughing at what I had felt originally next year. I think, I will be coming close to that assumption.

I’ve met guys that have had “H” and those who haven’t. I didn’t want to go into a relationship with someone who had it because my choices were “now” limited. Then you are just wasting their time and yours. It has the be the real deal. In other words, don’t just be with someone because you share the same “skin condition”. Have the same beliefs, value system, interests, compatibility, etc.

I have told five guys that didn’t have it. One said, “That’s common, I always see those Valtrex commercials at night. I didn’t end up having a relationship with him. He said, “but, I’m willing to accept you”. But, I told him that I wasn’t willing to accept him.

Another guy, said “he was scared of it”. But, has since changed his mind and called me to ask me out. I didn’t call him back.

Another guy said, it’s all about balance. And that I had a lot of other things to offer.

Another guy said, he has friends that have it and he dated a girl in college that had it. He chuckled. He thought I was going to tell him something “serious”.

And, I just told someone I had went out with just once. He told me he didn’t care and still wanted to see me. He said that a guy that would care was just looking for casual sex and not love or anything long term. . And, they weren’t worth my time. He also offered to go to my local herpes help meeting to tell others the same. He wants to let my group know that those that reject aren’t worth your time. I told him and he said he doesn’t care and doesn’t change his opinion of me at all. He told me that he respected me telling him and that it must have been hard.

Now, I don’t know where I will end with this. Or, even, if any relationships will evolve from what I have so far experienced. I still won’t settle for someone just because they will accept me or that we have the same dx. I’m more than that and so are you…..

So, thanks Angela & Libby and everyone else for being their for support.

Part of the serenity prayer…. It’s what keeps me going…

God, grant the serenity for the things that I cannot change (Can’t change the fact that I have herpes and that some people will prejudge me)

The courage to change the things I can (my attitude, and how I CHOOSE to react to it. How I choose to come to peace with it. I can only control my reactions and my journey to having peace with it and how it will or will not define me. No one else can.. And choosing to forgive those that have harmed you. Its not for them, its for you. This was the HARDEST for me. But, it is possible, even without an apology.)

And the wisdom to know the difference….

~ F

* You can also find Angela and Libby hanging out over on Picking Up the Pieces & Shut Up N Post!

Heartland Clinical Research, Inc. is conducting a clinical research trial to evaluate an investigational medication for the treatment of genital herpes. You must be 19 or older and have had at least 4 outbreaks in the past year.

At no cost to you, the trial is completely confidential and you will be compensated for your time and travel. Please call 402-502-9364 to schedule an appt. Heartland Clinical Research, Inc. is located on 90th and Blondo, Omaha, NE.

When you call or meet with them face-to-face please let them know that Angela Stevens referred you. I am getting credit for the referral and just want to make sure that they know you found this information via Me! :)

Hi my name is Sara, I am 17 and I have genital herpes. I began reading everyone’s stories and I really haven’t been able to talk to anyone about the pain and suffering you go through with this type of STD so I decided to tell my story.

I was born and raised in a strict apostolic church and wasn’t really exposed to the outside world until I stopped attending at the age of sixteen. I wasn’t as experienced as the rest of the kids my age so I did as much partying and drugs as I could to catch up with them.

I had a few drunken one night stands and started to get a bad reputation so I quit having casual sex. I found myself a boyfriend and we were together for two years.

We broke up about 4 months ago and I started looking for someone to fill that void. I met a guy at a party I attended and we hit it off great. He was a perfect gentleman and never rushed a thing. In fact I had to kiss him first.

We started dating and started an intimate relationship as well. About a month ago I found out he had given me genital herpes.But he had not and to this day does not have any signs or symptoms.

I began having an itching sensation in my groin area. My first initial thought was a yeast infection so I ignored it and went to on with my day. When night came around the itching became extremely intense and it was burning incredibly bad.

I tried lying in bed that night but I was so incredibly uncomfortable and I was crying hysterically from pain. The only position I could bare was sitting slightly slanted backwards so I slept sitting up.

I told my mom to schedule me an appointment to figure out what was wrong. When we went to the clinic they asked me to urinate into a cup for some tests.

When I went to the bathroom I was in so much pain from the burning I vomited and I couldn’t walk without intense pain. When the doctor told me the news I shrunk way down into my chair and began weeping uncontrollably.

I was so mad because I wasn’t supposed to get something as disgusting as this. I was in a healthy, natural, all American, monogamous relationship. Whenever I thought of someone with herpes I thought of someone who had slept around.

I just couldn’t help but feeling like the biggest whore on earth. I was angry because there are prostitutes and whores out there and they are cleaner then a whistle.

I was disgusting, who the hell would want me now, I kept saying to myself. Then people began to talk because a few “close friends” my boyfriend told weren’t such good of friends after all.

That more than anything was one of the worst experiences out of the whole ordeal because they didn’t understand that it wasn’t because I was sleeping with lots of people. People who don’t know are quick to judge and I hated my good name being smeared all over the town.

But things got a little better and I am slowly coping with my disease. I am still with my boyfriend, whom is now my fiancé and life is looking up. Now I just keep telling myself that it is not that big of a deal and that I can go on living. So I try to go on living everyday.

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You know a lot about breast cancer, but what do you know about cervical cancer? Everyone knows about the “one less” ads promoting the Gardasil vaccine, but what do they really know about Human Papamillovirus?

HPV is the most common sexually transmitted infection. You can get it from skin-to-skin contact, even if you have protection.

Men can carry the disease but there is no test for them. Most people don’t even show any symptoms of the disease.

A new campaign called Tune In HPV has risen around this issue and has provided a safe space for people to share stories. Our Web site, www.tuneinhpv.com, provides a place to share your story about HPV. It doesn’t matter whether you had the disease, knew someone who had it, or wanted to share something distantly related. We are open to anything that promotes HPV awareness.

We plan on making videos from the submitted stories and posting them on the Web site as well. These videos are short, off beat, humorous at times, and always informational. We hope that visitors will gain knowledge while being entertained by watching our videos. We are not in any way trying to give our medical advice to people, please seek your doctor for that. We are simply here to provide a place for people’s stories.

Our information is supported by the Washington D.C. Department of Health and the Center for Disease Control. Tune in HPV is a grass roots campaign built through the School of Communication at American University by a Communication and Social Change course.

We want to encourage you to “tune in” to the knowledge within you and to protect yourself from HPV. We want to hear what you know, what you’ve experienced, and we want to make you laugh and think.

Be sure and let Giovanna Chesler, our executive producer, know what you think of tuneinhpv.com at chesler@american.edu

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Another place to share your HPV story

Join our HPV discussion group

I found out my childhood cold sore virus had moved to my eye after a couple of misdiagnoses in 2003 – I was 29 at the time. Extreme light sensitivity, etc. in the high altitude dessert turned my life completely around. With all windows blacked out, I slept during the day and worked from home at night with an eye patch over my affected eye, which made detailed computer work pretty difficult. Other symptoms included, redness, pain, scratchiness, itchiness, blurred vision, runny eyes, general run down feeling, horrible anxiety and depression and as it progressed – I eventually got several flu like symptoms too (in bed for days at a time, fever, congestion, etc.).

After several urgent care visits, I was finally diagnosed with eye herpes a month later by the hospital’s ophthamologist, he prescribed me viroptic and pred eye drops. I finally recovered after a couple months, but then I broke out again to the worst pain I’ve ever experienced. I cut my hair hoping that would stop the most severe headaches of my life. Doctor’s dismissed the feelings I had “in my head,” but eventually after a couple more doctors I got on oral anti-virals too (anti-virals have made an incredible difference!). It took many months to recover from that second outbreak, as I tried going off the drops and oral anti-virals, but I broke out again, and again. Finally we found some very knowledgeable and experienced doctors that got me off drops and on suppression therapy at UCLA’s Doris Stein’s Cornea Division. They have treated me like gold and I’ve gone there ever since.

Almost two years ago I moved a few hours outside of Chicago and I had only had a couple minor flare ups. We called my doctor in Cali and he said to take up to 2000mg of acyclovir if and when the virus acts up, and if it doesn’t clear right up to find a local ophthamologist. I had done very well up until very recently and I had a minor outbreak. Through a series of referrals I found another herpes specialist ophthamologist at the University of Illinois, Chicago. He confirmed my outbreak, switched me to Valtrex and I have another appointment with him in a couple weeks. I am grateful that when there is viral activity present, I now have control over it – I have become aware of what my body needs (usually an increase in anti-virals and a few days of rest/limited sun exposure), and I do well mostly on my own anymore.

I hadn’t done much of my own personal research since I first found out about my disease. I did a little online research, but mainly began therapy to get a better handle on my stress/anger issues. I was pretty frustrated there was limited information about ocular herpes, and with my first year of nothing but poor doctor advice, I didn’t want to further mislead myself with all the “miracle herpes cures” and whatnot out there. I recently did a great deal of research, though, and was pleased to find a little more info available, but I definitely had to dig past all the bogus hooey. Some of which I found was posts on herpes boards from frightened individuals – claims about brain herpes being a HUGE killer that we should all be afraid of it – that frightened me away from learning more about the very rare, extreme cases of my disease. I’ve since studied up on HSV-1 a great deal and I feel more confident that my life will go on even if I lose more vision and/or the virus keeps spreading. Actually when I read that many encephalitis (brain herpes) cases go undetected, because it is so difficult to detect, I wonder if I didn’t already have it when the headaches were so intense. All the other symptoms were there, and I was desperate enough to cut my long hair that I’d been growing out for over 10 years. I have lossed vision and at least two straight years of my life, living in a cave – herpes is not something to be taken lightly, but it’s also not something to be scared and run away from either. It is what it is, a pain in the…;) I think the best thing to do is find the best care for your body and don’t give up no matter what.

I find that generally people are scared to talk about herpes – but the majority of us have one type or another. People don’t know the dangers because they’re scared to get past the stigma or whatever; well I’ve been doing a lot of talking… Some of my family and friends seem scared of me right now for their own personal reasons, but that’s ok, my eye herpes brought about big changes, and that takes time to adapt to for people that don’t understand. (And, well, there are times when I don’t relate to them either…;) Because it’s difficult to go it alone and there aren’t always perfect support groups out there for rarer individual viral strains of herpes – I learned to seek out whatever support that’s available. I now have the best friends a gal could ever ask for and I’m always looking for more. I am so very grateful for those that have really been there for me. I look forward to being there for them too, ’cause I know I’m going to be just fine and it feels so wonderful to help those that have helped you. This is such a wonderfully informative site. Thank you Angela for your amazing contribution – I sure hope many others follow this shining example of getting the word out.

Much love and support,

Heather

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ASHA is one of many organizations participating in the One4One campaign, a unique program focused on empowering women to help make a difference in the fight against cervical cancer.

The campaign urges women to talk to their healthcare provider about ways they can help protect themselves from cervical cancer, while also raising money to increase cervical cancer information programs and other educational services.

For each woman who pledges to talk to her healthcare provider about cervical cancer via www.One4OnePledge.org between April 24 and June 5, Merck will donate $5, up to $1 million total, to the participating One4One organizations.

The funds raised will be used to provide cervical cancer information programs and other educational services for women across the United States, including women at greater risk of developing the disease due to lack of access to information or healthcare.

Let’s Talk about HPV and Cervical Cancer

There are many times I get feedback from folks that I feel is powerful enough to want to share it with the rest of you! Before I share though I always write to the person that sent their e-mail to make sure it’s ok with them first. I don’t ever post anything unless I have permission to from the author OR unless I can find it on a public message board. Anyway, thought ya’ll would find this to be of interest…

Hi Angela,

I came across your Yoshi2me web site today while doing some internet searches for information on herpes. I am a 24-year-old woman, and just last week I tested positive for HSV-2 while experiencing my first outbreak. Since then I have been going through a roller coaster of thoughts and feelings. One day I feel fine about it and the next day I find myself freaking out! Half my brain is trying to be rational and say, hey, it isn’t cancer or anything, but the other half of my brain just wants to cry and cry.

It was really rewarding for me to read the very personal accounts on your web site and recognize the success of so many people in leading happy lives in spite of this virus. Your site helped me to realize that this diagnosis is not the end of the world, or the end of my romantic life, or anything more than one of life’s little challenges. I really appreciate you having the courage and frankness to open up to others about your experience and create a place like Yoshi2me where people can come together and support one another.

I am fairly certain that I contracted the disease from my boyfriend of five years, who left me several months ago. When he left, I learned that he had been having an extended affair with a married woman and had probably been unfaithful in the past as well. All that infidelity combined with our unprotected sex (since I thought it was a long-term monogamous relationship headed towards marriage!) would have provided easy circumstances for transmission. I was already suffering from issues of betrayed trust at the end of this relationship, and learning about my herpes diagnosis made it even worse.

However, I am very fortunate to now be in love with a much better person. We had only been together for a few weeks when I learned about my positive diagnosis. We were already very close and very committed even after such a short time, but I was terrified that this news would scare him off entirely. On the contrary, though, he is very supportive and says that this diagnosis has no impact on how he feels about me. He told me, “I love you and I intend to spend the rest of my life with you. I don’t ever intend to have sex with anyone else. So frankly I don’t care if you and/or we have herpes. We’ll have it, and we’ll deal with it, and it won’t be the end of the world. It won’t ever change how much I love you.”

Having that kind of support has really helped me through these first couple of weeks. Finding web sites like Yoshi2me provides an indescribable amount of help as well!!

Anyway, I apologize for this email’s length and personal content, but I really wanted to thank you for creating a site that helps herpes patients feel like normal, beautiful, and worthwhile people instead of lepers and outcasts. Thank you, thank you, thank you.

~ Erin

Note from Angela:

Thanks so much Erin for sharing your story with me and for allowing me to share it with others. I know there is probably one person out there who feels they are alone. They are going to read your story and hopefully realize that there is some light at the end of the dark tunnel they have found themselves in.

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Do you have genital herpes? A clinical research study is being conducted to evaluate an investigational medication for genital herpes. To qualify you must:

Be at least 18 years of age (if you live in Alabama, you must
be at least 19)
Be diagnosed with genital herpes
Have had at least 4 outbreaks in the past year

All study-related examinations, lab tests, and the study medication are provided to qualified participants at no cost. Qualified participants will also receive compensation for time and travel. For more information, please call 1-800-438-5260 or visit www.ashastd.org/trial.cfm.

Talk about other Clinical Trials going on