12 Deeply Personal Stories People Shared Online About Being Diagnosed With HPV

March 4, 2021, is International HPV Awareness Day.

As part of their ongoing efforts to stop the spread of HPV and its associated cancers through both public and health provider education, HPV Alliance, in partnership with Moffitt Cancer Center and AdventHealth, will be hosting a virtual summit Thursday March 4 at 1PM EST featuring leading HPV researchers and oncologists, health advocate Actress Marcia Cross Desperate Housewives), and television personality Jamie Otis Hehner (Married at First Sight)).

This outstanding panel will help to dispel myths surrounding HPV, supply facts on prevention, give advice on staying healthy with HPV, and more on Facebook Live.

Photo courtesy of HPV Alliance

Sharing our personal experiences is a particularly powerful way for people to unite and educate others around topics as especially sensitive and potentially stigmatizing as STIs (sexually transmitted infections).

When it comes to the human papillomavirus, individuals' experiences are highly varying and complex. Many people experience few to no negative health effects, while others may develop life-threatening medical conditions. Social consequences can be either devastating or pretty much non-existent, and emotional responses vary widely as well.

From diagnosis to dealing with relationships to staying healthy and simply living a normal life, reading and sharing personal accounts can challenge the stigma, share important information, and help anyone affected by an HPV diagnosis realize they are not alone.

Here are 12 deeply personal stories people have shared about their experiences with HPV gathered from generously honest people on social media.

1. HPV still carries an unfortunate stigma.

"I had a biopsy, and had some irregular cells removed by laser. A little painful, a little scary, but basically fine. It seemed to be part of the cause for irritation that ended up feeling like a yeast infection for months, but my new doctor said to stop taking yeast cures and it would clear up. It has, and I'm fine.

"I have another growth, but it's going away, and the doctor said it's better to just let my body heal, everything is fine, and it will clear up soon.

"The connection with cancer is scary, but as long as you keep an eye on it, and take care of yourself, it will likely just go away.

"I think the fact that when I was young, I was terrified of STIs and AIDS so when I learned I had HPV, it made me think I was damaged goods or something — that's my body and my sex life were ruined. But the more I learned about how common it is, how our bodies just heal, the more I realize it's just part of being a woman who has some experience. It just happened. There was no way he could have known — he didn't have symptoms, there is no test for men. It's not like I was irresponsible and it's not like I am damaged and can't have a perfectly fulfilling sex life.

2. Many people who learn they have HPV come to realize the extent of the misinformation they previously believed.

"Personally I've found that people don't talk about it because they don't know. I had my first irregular PAP before I was sexually active, so I've had it through no fault of my own, and totally unashamed of that fact. I went through the colposcopy and a laser treatment procedure for pre-cancerous cells on my cervix and have been issue free since. Talking to my doctor, it's ridiculously common, almost everyone will get it at least once in their lives, and yet:

"I was at a bachelorette party once with about 20 girls, playing "never have I ever" and the question comes up "never have I ever had an STI". I drank. Not a single other person did. So either I was partying with 19 statistical anomalies, a bus load of liars, or a whole bunch of uninformed young women.

"I think that's crazy. Not only that they were so ill-informed that they didn't realize the likelihood of 1 in 20 having ever had any form of STI (one nursing student did comment on that at least) but just the general opinion that only people who are dirty and irresponsible have to worry about these things."

3. Or they may experience no complications at all.

"When I was 19, I found out that I had HPV, the kind that can cause cancer. I did not have any warts or symptoms, so I don't know when I got it, or for how long I had it. Luckily, 4 years later, my paps are normal. It was terrifying though.

"I had to wait a week to get a biopsy, then a few more days for the results (no cancer luckily). I felt like I was waiting for months. Now I'm clean and I've been with the same partner for 3 years."

4. And it's understandable to feel scared when you're first diagnosed.

"I had an abnormal pap when I was about 19 years old. My gyno didn't really explain anything about HPV only that I had it. I freaked out on the way home and I had to pull over to cry and call my mom. After I did some more research and realizing 80% of women will have it at some point, I was able to calm down.

"They did the colposcopy (sp?) and told me that it would probably clear up on it's own. I had another exam 6 months later and it was clear."

5. The takeaway for some is the importance of getting tested regularly.

"I found out around 1.5 years ago. The pap smear came back positive for ASC-US. I had to get a colposcopy…. it was like getting another, slightly more invasive pap smear.

"My overall feelings initially were a lot of confusion. I had the HPV vaccination but it wasn't until I did more research that I learned about the different strains. I became immediately aware of how little I knew about my body. I also realized how little I could do to prevent it.

"It was also a reality check. Prior to being sexually active, I never dealt with these kinds of issues. I never had to worry about getting STDs/STIs or be concerned that I could get pregnant. It just made me very aware that I need to be careful and always aware of the consequences."

6. Several had difficult treatment experiences.

"Cryosurgery for wart removal — most painful thing that I have ever experienced in my life. Doctor was a total b— and got so nasty with me for crying. Burning things off your privates HURTS. Colposcopy & biopsy — hurts not as much, but very hard for me mentally and emotionally.

"Have had it for years now and still have it (yes, it has gotten worse) and have an appointment with a new gyno this week since apparently the last two aren't very interested in doing anything but forcing me into biopsies and paps every few months which I cannot handle emotionally. So we'll see."

7. Then there are those who found out in a less than ideal fashion.

"An ex cheated on me. Girl called his phone, he talked to her for a minute, hung up, told me it was a wrong number. Girl came over that day and apologized, I asked why. 'Dude didn't tell you?' Tell me what?

"She had HPV, I was understandably pissed that he lied to me about that phone call, scheduled an appointment with my gynecologist. Everything came back negative."

8. Some felt unfairly shamed or blamed for the condition.

"I'm that one rare case that had HPV turn into cervical cancer. I was lucky as it was detected pretty early. Not early enough though, so I had a hysterectomy and radiotherapy. That was about three years ago and I am ok now.

"The biggest fun was calling my ex-boyfriends to tell them and then being accused for being responsible that their girlfriends now have HPV. While I was battling cancer by the way. I don't talk to any of those dudes anymore."

9. Others now feel committed to combating bias surrounding HPV.

"At one of my doctor visits I began chatting with the other women there and we all agreed about the stigma of HPV and how some of their doctors even made them feel dirty or slutty for contracting it and this caused many to be shamed into keeping quiet and not discussing it.

"It gave us all some peace of mind knowing that many women experience it and it isn't something to fear if you maintain your regular gyno visits and practice safe sex."

10. Many want to spread better information in hopes of helping others.

"I see a lot of posts about people worried about HPV and as someone who's been through it I just thought I'd share my story. This is actually kind of therapeutic for me too.

"When I was 16 I had my first boyfriend ever. He was 23 years old. We met online when I was 14 and a couple years later met in person. I won't go over the details of the relationship because it's really sickening and messed up in its own way. But long story short, he was the first person I ever did anything more than kissing with. I had never even given a hand job or dry humped over clothes before.

"We had sex within a week of meeting and after about 2 months of regular sex I noticed a strange off-white growth on my anus. I honestly just convinced myself it was a hemorrhoid for a while. I remember trying to sneakily look at my boyfriend's penis while performing oral sex to see if he had any bumps (that's how immature I was. I couldn't even ask to get a good look at this part of his body that I was putting in my mouth).

"Then a short while after the first wart I noticed two little brown mole-looking growths, one on my labia and another just above it. That's when I really started to worry. I went to my doctor and had my very first pap-smear. She told me right away that the bumps were genital warts caused by HPV. My pap, of course, came back abnormal however it was considered low-grade (not a risk for cervical cancer, thankfully.) She made another appointment to have the warts burned off. It was painful and the healing process was not fun at all. But at least the warts were gone.

"I can remember feeling like my life..was over. I was 16, had only been sexual with ONE person who claimed to be "clean", there is no cure, how was I ever supposed to be with anyone else? How could I trust anyone to be honest about their sexual health? And what about the people who truly don't know they have it and pass it on?

"This diagnosis honestly mortified me for years.

"I had abnormal paps every year after that for a long time and the wart on my anus came back one time 4 years later, which I had burned off again.

"I will always have scars on my vagina from the other two. I didn't have another boyfriend until I was 20. But you know what? Life does go on. You get older and realize that HPV is absurdly common. And if you get warts you honestly are getting one of the safer strains, as bad as that sounds. I started living a healthier lifestyle, improved my immune system and the warts have stayed away for over 6 years now. I've had protected and unprotected sex since my diagnoses and my partners have been unaffected. I got pregnant, gave birth, and my baby is completely unharmed.

"Your body will heal. The virus will clear. (Side note: You should always inform any sexual partners of your STD if you're aware you have it. This can be a difficult conversation and not everyone will be okay with it, but with the statistics for HPV being so high, you'll probably be surprised by how common it really is.)

"So I just want to say to anyone who might be struggling psychologically, please stop torturing yourself.

"At 16, mortified and too ashamed to tell anyone, I definitely could've used some advice and guidance rather than the horror stories I googled. Just try to live as healthy as a lifestyle as you can and improve your immune system — this is the very best way to clear the virus on your own.

"Girls — GET YOUR PAPS! Even if you have no symptoms — the silent strains can cause cancer if left untreated so early prevention is important.

"Also, I still need to receive the Gardasil vaccines, been putting it off for too long but I do recommend it as well. Although it does not cure HPV already contracted or protect you from ALL strains, it does protect you from the most common ones."

11. And some were just grateful to learn they were not alone.

"You don't how much this means to me, thank you so much. I am 16 year old you trying not to panic going to the hospital today."

12. For others, the complications can be far more serious.

"It looks like #Cancer has decided to pick a fight with me. It truly doesn't know who it is fighting against. I have #Cancer from #HPV and it is a fight I intend on winning. I will document from my first hint of having #Cancer and the Chemo/Radiation treatment to beat it."

Through all of these stories, one theme remains constant.

The more we talk about difficult subjects, even scary and embarrassing topics like STIs and HPV, the better informed, less fearful and healthier we will all be.

You may be one of the 43 million Americans with HPV or become one of the 13 million newly infected each year. 

Join HPV Alliance, Moffitt Cancer Center, and AdventHealth Thursday, March 4, 2021, at 1 PM EST for a Facebook Live event with leading physicians, researchers, oncologists, and celebrities impacted by HPV who will dispel HPV myths, supply facts on prevention, give advice on staying healthy with HPV, share compelling stories of diagnosis, and provide empowering tips for self-advocacy.

During the event, HPV Alliance will also share an Athleta promo code good for 20% off items at Athleta.com.

Register at www.hpvalliance.org/m4

Ways to watch: 

Facebook Live: @hpvallianceorg       

Instagram Live: @hpvalliance                     

YouTube Live: www.hpvalliance.org/YT

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Allie McGlone is a writer who covers a variety of topics for YourTango, including pop culture and entertainment.

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