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 firstname.lastname@example.org. ASHA 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.
At 37, I am not promiscuous, and have considered myself educated on STDs. My only comment is, that this is one STD that is not listed in pamphlets that are distributed in doctors’ offices, and, even though I’ve heard of it, I was under an impression that only very-young girls were at risk and it was not that common. Also, if there is no way to test men for it and women as well, until an abnormal Pap smear, all these people that are told by their doctors they have no STDs, including myself (as I was told I could have had this virus since my 20s) are GROSSLY misinformed.
I have read so much on this subject that my brain hurts. I hear of reaching clearance, I hear of no cure, I hear of recurrent lesions, poor immune system, poor diet, etc. I just do not know what to believe. I have visited many web pages that seem to sell you their version of removing or enforcing the immune system. Then I hear all the info on therapeutic vaccines as well as prophylactic vaccines and wonder how can that even help me. And I feel so worthless. How can one tell someone they meet that they are positive for HPV?
It has been 8 months and my Pap test is fine, but I still have HPV and it is up to me whether I get a Pap test again in 6 months! Once again the doctors were totally insensitive to my horror of having an STD and offered no advice on how I should adjust my sexual activites and were totally unsympathetic that 2 relationships had failed because of the misconceptions of HPV. I have had a fruitless search for useful information on how to deal with HPV. Clinics here in the UK tend to give the same advice for all STDs and treat HPV with the same severity as other conditions and this had lead to a great fear of passing on and causing harm to one’s sexual partners.
I would like to thank you at ASHA for your precise and sympathetic information on your web site that I just happened to stumble across. As far as I know there are no HPV support groups here in the UK. I think I can now get on with my life confident in the knowledge that I am not the sexual leper that I was made to feel.
When I was 29, I had another abnormal Pap. I had a laparotomy surgery, which led to a colposcopy. I was diagnosed with pre-cancerous changes in the cervix. They held fast to the diagnosis of PID, and treated me with massive anti-inflammatory and antibiotic medications. Six months later, I had another abnormal Pap. They did an ultrasound, followed my another colposcopy. This time they diagnosed me with cancer of the cervix. One month later, I had a radical hysterectomy. I am still alive.
It was discovered when I went in for my annual Pap test. When I found out my doctor provided me with a pamphlet explaining what HPV is. The pamphlet offers little info and even fewer resources for finding out more. It also explains that in order to not “get” the disease to “not have sex with someone who is infected with it”. Personally, that statement means they ought to just package us up and ship us to a third world country. Can they at least come out with a pamphlet that explains what the disease is, that they are working on a vaccine, and possibly provide access to support groups and/or Web sites which will offer more information and what the current research is.
About 3 months ago I found out that there were more lesions that came back as advanced. I am about to go back to the O.R. yet again. This is a very frustrating disease. I am told that they can only treat symptoms at this time.
I saw on the news recently that there is a new vaccine to fight HPV in women. Maybe there’s hope for gay men. This is my experience!
At this point my sister, a pathologist, recommended that I switch physicians. She believed that a doctor trained in taking such biopsies should not have to “try twice” and get unsuccessful results. In addition, she was adamant that no diagnosis had been made and felt that undergoing any treatment in a woman who has not yet had children should be a careful, informed decision. I agreed and we located another physician who was a Gynecologist, not an OB/GYN. His only focus is gynecology and, as such, has honed specific skills over several decades in identifying causes and treatments of dysplasia. He performed a colposcopy and has scheduled a biopsy and allowed two months for healing of the cervix before taking a biopsy. After the biopsy, he’ll recommend a treatment approach.
My story to share regarding this topic is that it is very difficult to know if you are being treated by a physician who has had a lot of experience with dysplasia. We often do not think about the fact that a person might require additional specialization/experience in gynecology with sufficient years of practice in the various treatment options. So, I believe that the same selection process for an OB/GYN physician does NOT apply to the selection process for a physician to treat dysplasia.
It wasn’t until I started researching HPV (thanks to ASHA and other websites) that I came to terms with my HPV. I realized that it could have been my ex-partner that had given me HPV, but it also could have been any of the partners I had had prior to that. I am/and was not a very promiscuous person. I have only had 4 partners. But I learned that a basic rule for HPV is, if you have had sex with more than one person and so has your partner, then the risk of getting HPV is greater.
I ended up having to have a colposcopy done on my cervix. They were concerned that I could possibly have some pre-cancerous cells. I also had my warts frozen and that only took about 4 visits before I was “symptom” free. The colposcopy literally scared me. I think when someone tells you that they are checking for pre-cancerous cells, there is a part of you that immediately assumes the worse. I was extremely ashamed of myself. I was dating a lot, but not intimate with anyone once diagnosed. I was too scared to tell anyone what was really going on with me. I thought that any person interested would just run away and think I was a horrid person. I distanced myself in any relationship that I had.
Once I got my results back from the colposcopy, which were negative, I relaxed a little bit. I started out by telling one of my really close friends about my HPV and found out that she was extremely supportive. I ended up dating a great guy, told him about my HPV (that was probably one of the most nerve racking nights of my life!) and he ended up being ok with it. We got married a year later and are still together. He just started showing the low risk signs of HPV about a month ago and has to get it taken care of. I feel bad, because we both know that I “gave” this to him. But he still loves and supports me anyways.
I have had ups and downs since first being diagnosed with HPV, but in some since it has made me a different person. There isn’t a day that goes by that I wish that I had made some better choices in my life, but in some respect I think that by my having this STD I have been trying to help others with this. I have had, through sharing my story with friends, found others with this and am surprised by how ignorant people are about STDs in general. I just hope that I can help one person and let them know that it is ok, I think that’s all I ever wanted when I was first diagnosed…someone to say that it was ok, and that I would get through it.