People often benefit from hearing from others who have been in similar situations, and many people write to us as a way of sharing their experiences, getting their concerns or fears off their chest, or simply to let others know they are not alone. What follows is a small sample of the personal experiences people have shared with us in hopes of helping someone else.
To share your story about being diagnosed, dealing with the emotional issues, telling a partner about herpes, or other comments, please send your email to commentstoHRC@ashastd.org. ASHA sincerely appreciates all submissions and each is confidential and anonymous. It is ASHA's intent to collect these comments for use in our patient advocacy work. All submissions are property of ASHA and can be edited for length and clarity. Due to the large volume of emails, we regret we cannot provide a response to each submission. If you are seeking information, referrals or materials, please utilize ASHA's other HPV services. Questions about HPV can be posted on our message board. Thank you.
I am 18 years old and 4 months ago (one week before my 18th b-day) I had noticed some sores in my genital area. I scheduled an appt. with my gynecologist and right after looking at them she knew what was wrong with me. She told me that I had genital herpes. I couldn't understand what she was saying. I was thinking she had to be wrong, this couldn't happen to me. She told me she was sure that's what I have and I was hysterical. I would have rather been dead. I thought that anyone that I told would back away from me and not want to come near me. I felt so disgusted and ashamed of myself I could hardly stand to look in the mirror. I didn't know what to do, I needed someone to lean on and help me through this but I was so ashamed of myself.
I called my stepmom crying hysterically and she came to pick me up at the doctor's office. I could hardly tell her what I found out. Just saying the words 'genital herpes' was too hard to do. She was very sympathetic towards me but I didn't understand, her and the doctor were both telling me it wasn't the end of the world but in my eyes it was! How could anyone say everything would be OK and I would get through it? I couldn't even grasp the concept of having a normal life ever again.
Since that day I have researched it a lot and I have come to terms with it. I know now that it's not the end of the world and I can and am living a normal life. It has only been 4 months since I was diagnosed but I am already OK with it. There are times when I still get very upset over it but overall I have regained my self-confidence. I can hold my head up high again and be proud of who I am. I still wonder "Why me?" and I wonder also who gave it to me and when exactly I got it but I understand those are questions that I will never have answered. All I know is I have it and I have to take care of myself and be sure not to spread this on to others.
I have not had an outbreak since the first one 4 months ago and all I can do is take care of myself in hopes of reducing a recurrence. I will not give this to anyone because I know what it feels like. Someone I trusted and felt close to was careless and didn't worry or care about passing this on to me so all I can do is make sure I do my best not to pass it on to anyone else. I hope my words and experience with this can help others learn to be OK with themselves after being diagnosed with this. Life does go on and you can be happy!!!
I found out I had genital herpes 6 years ago. I had just accepted my boyfriend's marriage proposal one month before. I was devastated. I argued with the doctor. I refused to believe that I had herpes. I left the office, hysterically, in tears. After sitting in my car for about an hour, I went to the pharmacy to fill the Valtrex prescription. The pharmacists looked at my red, puffy eyes, and said "Everything will be okay." I decided immediately to tell my fiancé. The last time I was sexually active with another man had been about a year and a half before. I wasn't sure if I had contracted the disease from my previous partner or my fiancé. While having sex, a few days earlier, we both noticed a small cluster of bumps on my buttocks. I had a slightly tingly and itchy feeling in this area for a few days. After I explained to him what the doctor said, we hugged each other.
We have been married 5 years and we have a 3 year old son. I had a problem free vaginal birth. With a few extra precautions, everything has been okay! I was able to work through the emotions associated with this diagnosis by reading, researching, and learning more about the disease. I am not sure from whom I contracted genital herpes. To this day, my husband has shown no sign of symptoms. But, I know from experience that there is life after genital herpes!
I contracted genital herpes January 1998 as a result of receiving oral sex. After months of denial and attempts to self-diagnose, I subscribed to the helper and my life began to change – for the better.
I confirmed my fears of having contracted herpes and after two years of mild to severe feelings of disgrace and poor self worth, I began a recovery inspired by readers' letters. First, I sought medical attention two years after-the-fact from a herpes specialist at a small walk-in clinic. I then began taking prescription medicine and found that it works very well. I should have confronted the issue immediately and begun treatment earlier. I am now essentially outbreak free. I take 2 to 3 pills every two months when I feel possible recurrences coming.
After two years of no dating, I met and married for the first time at age 47 and now have my first child. We dated for six months before I told my wife about herpes. We had no sexual contact before the disclosure. I followed the helper's rules in making the disclosure – it went well. After four years of marriage, my wife has not contracted herpes. I am very careful and I use medication before we are sexually active. This is, of course, sometimes a mild annoyance to my wife. But I do not want to take unnecessary risk.
There is life after herpes. The Helper newsletter was enormously important and comforting to me. See a doctor immediately. Do not wait. Be patient and kind to yourself. I cannot thank The Helper enough.
As I walked up to the department of health, my heart was pounding. I was almost crying before I got inside. I'm 16 now and was only 15 at the time. Once inside, we waited for about 2 hours to be seen. And the whole time all I could do was try to ignore the gut feeling I had about having an STD. I had known something was wrong because it hurt to pee and I had some sores, but I didn't want to face it. I was glad my best friend came along to get tested with me.
By the time my number was called I was extremely nervous. The nurse drew my blood and led me into a room, leaving so I could change into a gown. What was only five minutes seemed like an eternity waiting for her to come back. After she examined me, she left and came back again. She took me to a tiny white room which surrounded me with STD posters. I had been waiting for about a half hour when I heard my friend saying thanks and bye to the nurse who had examined her. I thought "What's going on? Why do I have to stay and she doesn't?" The nurse finally came back in and my eyes shot to her hand where she was carrying a prescription bottle and a brochure about something. In that second, my worst nightmare came true. I saw that the brochure said herpes on it.
Before she said anything, I was crying hysterically. It felt like someone had stabbed me in the heart. I was in a state of shock, barely hearing the words the nurse was saying. After the nurse thought I had calmed down enough, she gave me the medicine and let me leave. I walked back out to the waiting room, feeling the stares of strangers as I left. I knew my friend was fine as soon as I saw her. She saw my tears and asked what was wrong. I told her and she hugged me. But I didn't even want a hug, I was too upset. In the elevator on the way down I just sunk to the ground. I didn't know what to do with myself. I just wanted everything to go away. I dealt with this terrible news alone after my friend dropped me off. I refused to tell my parents. I thought they would hate me and think I was a disappointment.
At the time I felt incredibly stupid, and I still do today because I don't even know who it was from. Was it from my ex-boyfriend who was now one of my best friends or was it the current guy I was dating? I felt even more stupid after I confronted both these guys and had them lie to me and refuse to admit that one of them had given me this disease. I hadn't even had regular [vaginal] sex and look what happened. I was more scared that day than any other day of my life so far.
Now that I have the situation under control I am learning to deal with the emotional issues I have. But it's so hard to go through this when I am so young. It's difficult to handle at any age, I know, but I constantly ask why God let this happen to me. I just wish so hard that I could go back a few months and change everything. I feel like I can't tell anyone...it's hard for me to even write this even though it is anonymous because everyone thinks you have to sleep around to get an STD. They don't realize it only takes one time. Some days are really hard and I look at the girls at my school thinking how different I am than them. But everything is getting better and I try my best to live a normal life. I told my parents and my mom supports me and tells me everything will be okay, but some days it is difficult for me to believe her.
[People often find that adjusting to a genital herpes diagnosis takes some time, but it is very natural to have these feelings. If you or someone you know is dealing with strong emotions related to being diagnosed with herpes, please know that you can call us at our National Herpes Hotline (919-361-8488) to talk with a health communication specialist. We also have information on support groups, which can provide comfort.]
I am 23 years old, and I have currently been seeing this man for a while and the other night we ended up having intercourse. We did use protection. However he called me the following day telling me that he has herpes. At first I was very mad, hurt, upset, confused, and felt betrayed. I really didn't want to have anything to do with him and I basically said it was over. I did ask some questions such as how often does he break out (every couple months), is he on any medication for it (no), and if he was broken out when we had sex (no). I have not been tested yet, however I am doing it soon. I have read up on herpes and have gotten a lot of information about herpes that I never really knew.
I guess basically I don't know if I want to be with him or not. There are lots of different reasons for why and why I don't want to be with him.
First, if he would have just told me that he had them, then I could have made the decision about having sex and we could have talked about it. I could have gotten a lot of information about it, but knowing that he lied to me like that is the hardest part, and not knowing if I can trust him again.
The second is that I feel if I do have herpes then I will see if it works with him, but now that is not fair, because I think the reason that I'm doing that is basically because if I do have herpes, then I'm thinking, "Uh, well I might as well," which is definitely not fair to me or him. That would be like taking the easy way out.
Third, if I do not have herpes then I really don't know if I want to continue the relationship. I really care about him, I miss him, and I think I was beginning to fall in love with him, he is a wonderful person, he makes me smile, laugh, and forget about all the worries of the world when I'm with him, but I do have lots of concerns for the future.
I am really concerned about having children. This might be selfish in a way, but for example I would prefer to have a vaginal delivery instead of a C-section. I want to be able to experience that feeling. I want to go through all of that to see a beautiful baby coming into this world naturally. I know a lot of this is later in life, but I do now have to consider these options that I never thought I would have to.[For more information on herpes and pregnancy, visit our Pregnancy section.]
Be informed (go to herpes websites regularly to keep updated on any advances) so you can intelligently discuss your health issues with your doctor. Also, keep track of how many outbreaks you have each year. I used to just mark on my calendar the letter "H" on the date of occurrence.
I had a difficult time getting my gynecologist to put me on the suppressive therapy. She would prescribe only 6 pills to use when I had an outbreak. Six pills cost me as much as thirty. For me, antiviral medication is a godsend, helping to alleviate the discomfort, too.
If you experience what I did with my doctor, then in my humble opinion, it's time to perhaps rethink returning to that doctor. One more thing: try to keep your stress levels low. I know that every time I have an outbreak, it's because I've stressed myself out by over-reacting to things, worrying too much, etc. Another thing is to be sure to get enough sleep. Being over-tired and stressed out on top of that are major contributors to outbreaks for me.
Thanks to so many who have been willing to share your stories. This is something that I have felt so humiliated and been angry about for 27 years. I am 56 and 27 years ago, while I was pregnant, my husband told me he had an affair. Almost immediately I started having the outbreaks but I had no idea what it was. I even went to the doctor and nothing was said about it being herpes.
As time went on and I suffered with the outbreaks, several years later my doctor told me what it was. I was devastated because these outbreaks for me were extremely painful and would last sometimes 5 or more days. At the time I had no idea how I got them because I had never heard of such a thing.
So as you expect, I did come to the conclusion that it did come from my spouse who got it from being unfaithful. The ironic thing is he has never suffered from any outbreaks, and that is just not fair. Yep, I have forgiven him and we will be celebrating 39 years of marriage. Oh, it's by no means easy, because every time (which is not very often any more) I have an outbreak it's a reminder of what he did. But life is to short to stay angry and there's so much to be grateful for, so that's what I chose to spend my energy on while still living. I figure if God can forgive me for all that I've done wrong, which is much, than I should do the same.
I hope my story has helped someone else to deal with the pain as I have and just go on to live a happy life.
I contracted herpes through my best friend. We had been friends for two years, but lost touch, and then we reconnected. I trusted him explicitly. I asked him if he had any kind of STD. He told me 'no' and I left it at that because I was naive and again, I trusted him. I felt I had no reason not to. I irresponsibly had sex with him throughout our new relationship without condoms. My relationship with him was the most fulfilling of any I had ever experienced. I was never happier.
Last Thanksgiving, I was going to meet his family for the first time. We were all converging in Virginia, which was a long drive for us. That morning, before the drive, I noticed I was kind of sore down there. I didn't think anything of it. About an hour into the drive, it was burning, so I thought it was a yeast infection. I got some clotrimazole and I thought that would be it. Wrong! The car ride was agony for me. I spent five minutes meeting his family and then I made my excuses, saying I was exhausted from work.
I went to the bathroom and I got right up on the sink to see if I could see anything in the mirror. I looked and I saw little white things. I almost stopped breathing. I knew I had tested positive for nothing and I had been faithful. I had no explanation but I knew something was wrong. He came to check on me after settling in with his family. I tearfully told him something was wrong and that I had never cheated on him. I was so worried that he would think I had done something wrong. He asked to see what was wrong and I showed him. He turned away from me. I was deeply hurt by that and I asked him to please talk to me. Honestly, I wanted him to tell me nothing was the matter; I wanted him to explain it away. He still wouldn't look at me, so I reiterated (kind of desperately) that I had never cheated on him. I was standing up now trying to get him to look at me. He still wouldn't look at me. Instead, he whispered his nickname for me and said, "I have something to tell you."
That was it for me. I couldn't breathe. I couldn't even stand up. I fell right to the floor. I couldn't move; I couldn't speak. I was completely numb.I couldn't believe that he just confirmed my worse fears, that he had lied to me, that he had betrayed me.
He told me that his ex-wife had herpes and he caught it from her. She never told him, he found out while he was deployed. He said that he was scared to tell me and that is why he never did. After I got over my shock, I couldn't even be mad. All I could think about was that I was going to be better than him. I told him I would never do what he did to me by not telling me. I said I would never take a decision like that away from someone I respected, loved or liked. I did not get mad. To make a long story short, I forgave him right there, telling myself that I was being the better person by not losing control.
That night, I couldn't sleep at all. The next morning, before anyone woke up, I had him take me the doctor because I thought I was going to die. It just happened to be Thanksgiving, so the only place I could go was the emergency room. I was humiliated. I wanted to hurt him, but I just kept going over how much better I was by forgiving him and vowing to never be such a jerk to a sexual partner. Having to go to the pharmacist was the worst for me. I had to wait there while he filled the prescription and I knew that he knew why I was getting acyclovir. Up until then, I had never dealt with anything like this. I was looking at all of the Christmas ornaments they had at the drug store and I was so sad. I knew my life would never be the same. Deep down, I knew it was my own fault for not insisting on protection regardless of whether or not I trusted him. I just didn't want that kind of reality at that time. I just wanted to blame anyone but myself.
I spent the rest of that weekend in my bed, crying to my mother. I was so thankful I saved my Perrier bottle from pregnancy because it was the only way I could handle using the bathroom. My mother wanted to kill him and she could not understand why I forgave him and stayed with him. I ended up staying with him for six more months before it really dawned on me how much I did not deserve that.
I understood my blame in the whole situation. It was a hard lesson but I am now my first line of defense. Telling him to leave and realizing just how much I am worth was one of the hardest things I have ever done. He did not understand at all -- he kept saying things like "it's happened now so just move on," and I truly feel bad because he will probably do it to someone else. I just hope they are not as naive as I was.
I have had two sexual partners since him and both knew from the very start that I have herpes. I went through all of the information I had on it, answered their questions, and it was not uncomfortable at all for me. It made me wonder why he was "scared" about telling me. I am not ashamed about having it, and someday I would like to publish a small story about it. I want females to know that, no matter how young or old they are, or how inexperienced or experienced they are, they should stand up for themselves.
I contracted genital herpes nearly thirty years ago from my former husband, who often had cold sores. I had described symptoms to my doctor, but he passed over it as a "skin irritation," gave me a tube of "ointment," and sent me on my way! I did not know I had it until about three years ago, nor did I know I could get it from him. I was married for several years to another man, who worked in the medical field, and he never suggested what I had was herpes, nor did he ever himself have an outbreak.
Now, having been single for 15 years, I realize I could have been spreading it to others. Never have I heard a commercial for cold sore medication stating that cold sores are the same virus and can be transmitted to the genitals through oral sex. If indeed 50 to 80 percent of the American population carry the oral virus, I feel it is imperative to get that information out, instead of letting people continue to make genital herpes sound like a life-threatening plague, and ignore the threat of oral herpes through oral sex.
When I was diagnosed with herpes, a year and a half ago, I was devastated. I screamed, cried and called out of work few a days, basically hiding in my room before making the decision to tell some of my closest friends. About a month preceding my diagnosis I started to have an achy feeling in the back of my legs and buttocks. I was also constipated, for the first time in my life. I had a very mild outbreak the first time so I ignored it, telling myself that it couldn’t be herpes, thinking maybe it was just a yeast infection.
After this incident I had a much more severe outbreak that I went to the gynecologist for. The nurse practitioner was insensitive towards me and did not give me the information that I needed to take care of myself. When I called for my final results, which the nurse gave me over the phone (not a practice I encourage from providers), I was able to ask some questions, like how to manage having my period and an outbreak or how to not spread it to other parts of my body. She also suggested I look it up online, another practice I wouldn’t suggest unless you know the site is reputable.
Overall, my experience with my medical provider and my diagnosis and treatment has been very poor. For this reason I started to look for jobs in the field of STD prevention and education, so that I may be able to help others deal with their diagnosis and their medical providers. I am happy to say that now I work as an advocate for HIV/AIDS patients and I am getting my voice out there in that way. Unfortunately I was not able to get adequate support around me in my time of need but I am making sure this doesn’t happen to other people.
I am still learning how this disease fits into my life and how to manage. I still haven’t hit the milestone of having to tell a partner and it is something that I dread but I am comforted by the fact that I have resources and supports (like this one) to help me when the time comes.
I just turned 55 years old. About 2 weeks later, I became very ill with what I found out to be herpes. I have not EVER experienced so much pain and yes, I have been in labor with 3 boys and also had kidney stones. It is now 3 weeks to the day since I became ill, and I do feel somewhat better. I am also a nurse and as a former women's health nurse thought I was well educated. I was not. The ASHA website has been wonderful support and I will be recommending it to my doctor - a gynecologist, who I felt could be more supportive.
I believe after some research, that I have contracted this disease by way of oral sex from my new husband. He and I have been married almost 2 years and together nearly 4 years. I discovered through our conversations that he had many fever blisters throughout his life. I recall a slight blister even since we have been together. So much for the educated nurse -- such a disease process as a fever blister carries this disease, even in a dormant state. The last time we had intercourse, I experienced severe vaginal dryness, and intercourse was painful for me. I recall painful urination the next morning, and though I thought it was a UTI. I also recall thinking the pain was "different" and more severe.
I have run the gambit of emotions and these continue. Growing up when I did, I have enjoyed my sexuality and I have used it. I love and enjoy having sex and I grieve that it will never be the same -- now at a time when birth control is a non-issue. I have no one else with whom to share this grief. My sister is the only person (besides my husband) that I have told. She is wonderful and supportive and expresses no judgment but cannot empathize. I have appreciated the writings of others here. I write myself in case there is another woman of may age who can gain some support from knowing my story.
Perhaps when we have found a cure for the important diseases such as ovarian cancer, breast cancer, any cancer, AIDS/HIV, we can start a purple ribbon cure for herpes. Purple ribbons have long held a sign of courage and it takes great courage to live through this and face it openly and bravely.