Name: Maria 

Age: 30 

Year Infected: Unknown 

Occupation: Teacher 

Diagnosed: 2007 

Prodromes: Vaginal itching, lesions 

Method of Control: Valtrex 

My Story: I was diagnosed 2 days ago. The pain is immense! I do not know when I got infected. I have something called vulvar vestibulitis (vv) which means I have chronic vaginal pain due to unusually sensitive nerve endings. My first sexual experience (I was 19) was nothing but pain. I was with that partner for almost a year and I was in pain every time I had sex. We used condoms with spermicide every time. Believe me, I tried to talk to my OB/GYN about it and they blew me off. They said the pain was normal for my age and level of sexual experience. My second partner (a year later) was a lot gentler and I learned how to manage pain during intercourse with him. I also was diagnosed with vv by a PA at the OB/GYNís. She had to look it up in a book. She said there was no treatment or cure. It was not until I went in for my annual pap smear when I was 26 did I find a doctor that was familiar with vv. My history with vaginal pain before then was me educating the doctors. I have found, through trial and error, that I am allergic to latex, non-latex condoms, spermicide, hormones (like the ones in birth control pills), any dye or perfume, the list goes on and on. Donít worry, I found ways to practice safe sex by basically using lubricated (sans spermicide) extra thin condoms and a lot of lubricant. I have to say that I have not been as diligent about condom use as I should have been, so it is possible I could have gotten herpes from any of my later sexual partners. I do not remember anyone with lesions. I do remember that my last boyfriend, before my husband, would refuse to perform oral sex on me when he had a cold sore. He said it would transmit to me as herpes. Again, I never saw any lesions on him and we were together for 3 years. I have tested negative for all other STDís. 

Since I was a teenager (even before sexual activity), I have always had some sort of vaginal pain (itching, irritation, etc.) especially before my periods, it sort of goes along with the vv. Therefore, I never thought I may have herpes. Last week, I noticed that I was getting irritated so I went through my ritual of rinsing with cold water after using the bathroom and applying anti-itch cream. I got my period and noticed I had some bumps. They proceeded to get worse so I went to the OB/GYN. He was great. He diagnosed me immediately. He said I had something called kissing lesions. He took a culture that is not back from the lab yet. He had me take Valtrex right there. I went home and started the Valtrex. He gave me no pain medication. I started alternating between Tylenol and Ibuprofen. The lesions got worse and so did the pain. I was waiting for my neighbors to call the police because I would scream so much when I urinated. It got to the point where my body would not urinate. My doctor called in some pain medication. It took the edge off and made me loopy, but I still couldnít pee! So then I had a catheter put in. I donít think I have ever screamed that loudly. My doctor was out of the office. I donít think the nurses who did it knew what vv was even after I told them. I am supposed to take the catheter out in a few days. I am not sure how long I can manage with it. The nurses forgot the catheter was made of latex. I did not want to go through taking it out and putting another one in, so I will see how long I last with it. My doctor did increase my pain medication, gave me a medication to offset the nausea, and gave me Zovirax (I used it once and it really burns.) I think it is the vv that makes it burn and the herpes just intensify the effect. 

It is funny how hindsight is 20/20. My husband, who had never given oral sex before me started noticing that he would get cold sores when he would perform oral sex on me. I guess I was in denial then. I knew what herpes was, I just didnít think you could have it without actually having lesions. I didnít think much of it. I just thought he was getting cold sores because his diet was horrible. Plus, I have gotten cold sores off and on for practically my whole life. My mother, father, and sisters all get cold sores. So far, he has had no lesions, however he has shown some chafing. He had never experienced anything resembling it before me. I didnít know chafing could be a symptom. I think I probably had it and gave it to him. He has much less sexual experience than I do. 

I have an IUD for birth control (the copper one without the hormones). In terms of the vv, I tried a combo of hormones and numbing lotion, but due to my allergy to hormones, they could not raise the level and I saw no results. I have bipolar disorder so I could not pursue the other option of slight anti-depressants. I have been misdiagnosed as depressed before and was not willing to go through taking anti-depressants again. 


Telling: Telling has not been an issue for me. Granted, I am not going to run out and tell everyone due to the stigma. I would probably lose my job. I told my husband on the phone and he said ok. He is from a third world country. He doesnít understand the big deal. I guess when you grow up seeing people starving to death this would not be such a big deal. I donít know if the reality of it has set into him yet. He has been tremendously supportive. I mean, he took today off from work to drive me to the doctor, get my medicine, clean the house, bathe me, prepare food for me, and empty my urine bag. This is very different for him considering where he comes from. If the women get sick in his country they deal with it and do not show the pain. The husbands would never take care of them like he is taking care of me. They would hire a nurse first or employ a family member to do it. I am amazed by him more and more each day. He did hit the fan when he paid the co-pays on the medicines. I guess the hardest thing for me is the lack of dignity. I canít wear clothes below the waist and I have a catheter and a bag with my urine attached to me. I am having my period and canít use tampons or pads so I basically lay on the couch with a towel under me. 

I live away from my family so I told them on the phone too. They were very sympathetic and supportive. I think my mother was more concerned with preparing me for the pain of the catheter. All of my family members are in the health care field, so they knew of the symptoms and statistics. There is absolutely no shame there. I also told my two best friends by phone (they live far away too) and they were sympathetic as well. I am fortunate. I grew up in a loving, accepting, and open-minded family. I also try to surround myself with genuine people. Granted, I do not plan to tell my grandparents or extended family. I advised my husband not to tell his family. They come from a different culture where they received no sex education. I donít think it would be well received. My husband does not think it is necessary for us to tell them. His family is very private, and rarely do they discuss their sex life. 

The thing that bothers me the most is the prevalence of this disease. I wish I had another profession so that I could become involved in grassroots education. I think if I began talking about it with people, I would probably lose my career and my source of income. Perhaps I am underestimating people, but who would want someone with an STD teaching their child? This disease has made me evaluate my life a bit more. I now know the necessity of having health insurance. I have gone without it before. The cost of these medications without health insurance is staggering. It is enough to make you want to move to Canada or Europe! I also know I can no longer work such stressful jobs. I teach at risk children. My administrator is like Big Nurse from One Flew over the Cuckooís Nest. I must slow down. I think this is Godís way of forcing me to slow down, listen to Him, and enjoy life more. I feel fortunate to have found this website. Thank you everyone for taking time to read this. I hope my story has been able to help you!