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. If you are seeking information, referrals or materials, please vist ASHA's message board.
Stories of hope, survival and courage from the National Cervical Cancer Coalition
I am a 24 year old female who recently tested positive for high risk HPV type. I went for a routine exam and asked to be tested for STDs. I was very shocked when I received my results one week later. But as I have been doing my research, I understand that it is possible that my pap test could not detect (or I was not experiencing an abnormalities) from my last test six months ago. This was the first time I had ever been tested for HPV. Every emotion ran through me when I found out and then the emotions turned into fear. When I discussed this with my partner, he initially could not handle it- he hung up the phone on me. It has taken him several days to understand that he could've been a carrier or I could have had this from a previous partner and never knew it. I have to go for my colposcopy in several days and am very nervous...but thanks to this website I will go into my doctors office with a better understanding of this whole scenario. Thank you.
I found out I have high-risk HPV a month ago after an abnormal Pap smear. Your website was very helpful as I've read someone's story and switched from an OB-GYN to a GYN-only provider who could see me for the colposcopy a lot sooner than the previous provider. I was told that the colposcopy-biopsy results were benign and have to repeat the Pap smear in 3 months and, then, again, 3 months later. The procedure was somewhat painful and took 15 minutes. My doctor said that the majority of HPV-positive Pap smears happen during the last 3 months of the year and attributed the increase to pre-holiday stress.
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 am a 30-year-old male that was infected a little over a year ago. Originally I was diagnosed with a small lesion that was biopsied and came back positive for Bowenoid Papulosis (linked to high-risk HPV) by my dermatologist. Well to make the long story short I was placed on Aldara® for about six weeks, but I was taken off because it was irritating me too much. The wart was thought to have been removed, but it was not. I then intended to see a urologist, who decided to circumcise me to relieve the issue, but again the lesions returned 6 months after my circumcision.
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 imune 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?
[Read about HPV and Relationships here. Also read more about the issue of HPV infection in the long run on our Myths and Misconceptions page.]
I have been doing a lot of research on HPV, and your website has been one of the most helpful that I have found. It's been shocking and sad to find out I have this. I've only ever had two sexual partners, and both were/are mutually monogamous relationships, so I never thought I would get a sexually transmitted disease. I felt so much better when I read on your website that almost everyone gets HPV and that even people who have only had one sexual partner their whole life are at risk for HPV. My boyfriend has always been serious about remaining abstinent until marriage, not getting an STD, and I'm only his second sexual partner. So he was upset when I discovered that I have HPV six months after we started dating. Your website has helped: as I shared with him, "HPV status is not a reliable indicator of your sexual behavior or that of your partner." I appreciate the information you have provided, and I hope that in the future health educators make greater attempts to educate the public about HPV.
In March of this year I was told that I had high-risk HPV detected and had an abnormal Pap test. I did not know anything about HPV and asked what is was and how I had got it. Like so many other women I was simply told that I had an STD and that it had encouraged abnormal cell change but that it was not cancer. My occupational health screening department offered no counseling or advice to having an STD. I fully understood that I did not have cancer and that a retest in 6 months would monitor if there had been any change.
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 in my 20s (I am 51, now), I was diagnosed with PID (pelvic inflammatory disease). Each time I had an abnormal Pap, they would do a genital inspection, which was diagnosed as PID. By the time I was 24, I had four miscarriages. At 24, I had a tubal ligation. I had several laparoscopies, diagnosis always PID.
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.
I think the most frustrating thing about finding out is how little support the doctors offer. The disease itself has no symptoms (at least it didn't with me).
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.
I have been knowingly living with rectal HPV for many years. About two years ago I started developing small lesions just inside of my rectum. At first they were excised only to return several months later. This time the biopsy's came back as advanced dysplasia. I then went into the hospital and, in the operating room, had them removed via laser treatment. This was a complicated & (for a week afterwards) very painful requiring meds.
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!
I am 31 years old and have had two relationships in the past three years. However, my most recent pap test revealed high grade dysplasia. I was automatically scheduled for a biopsy, which initially made me feel as if I was "in good hands." However, I was seeing an OB/GYN and I did notice that the majority of her patients were pregnant. During the colposcopy, she performed a biopsy. The first biopsy resulted in "insufficient tissue" to determine results. She scheduled a second biopsy, less than a month later. The second biopsy resulted in "insufficient tissue" for analysis. The physician's recommendation was to schedule a LEEP.
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.
I was first diagnosed with HPV when I was 21 years old. And of course, my first initial reaction was disgust with myself (and my past partner I had), sadness, anger, confusion and probably most of the similar emotions a person would feel if/when they first find out they had an STD. I found out that I had low risk (wart causing) HPV and later, through a Pap, I found out that I also had high risk HPV.
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.