It has taken me almost a year of blogging to feel comfortable enough sharing something that is both extremely personal yet important for everyone to read. I’ve debated writing about this because of the judgement I could receive from people I know in real life. Then I came to the conclusion that if they chose to judge me… it would be their loss. My story can save your sister, your daughter, your granddaughter, your niece or even your girlfriend(s).
Cancer is an ugly ugly thing. It seems to have been stirred up in the media with Angelina Jolie’s recent decision to undergo a double mastectomy when she learned she is a carrier of the BRCA1 and BRCA2 breast cancer genes. Just recently, Michael Douglas came out and revealed how he developed throat cancer. However, the media often forgets the second most common cancer to afflict women (cervical cancer), and its culprit, the human papillomavirus (HPV). It is also a leading cause for throat cancer in men and women.
It was spring of 2011. I had phenomenal health insurance through my teaching job and wanted to take advantage of it. The year before I did not have my yearly gynecological exam (oops). Feeling guilty of not “doing what I was supposed to do,” I made the appointment. I had to go to a new doctor and a new clinic, so I had no rapport with her. The appointment went smoothly, until I noticed the doctor swabbed more than normal. She used two different kits. That’s when I thought something was off. She didn’t give me any indication that anything was wrong.
The nurse called me about a week later stating that I had to call the doctor for the results. Insert slight panic. Why would a nurse call me…only to tell me that I had to call back for results? This did NOT sound good.
I called the doctor. She said I had to make an appointment to talk to a doctor face-to-face about the test results. When she wouldn’t give me the results over the phone I knew something was bad. Really, really bad. I was referred to another gynecologist who then gave me some mind-blowing news. I tested positive for HPV. I lost all sensation in my legs when I heard that.
What exactly is HPV? How did I get it? What does it do? Do I have a sexually-transmitted disease? The doctor explained it the best he could to no avail. I had to go to Google to learn what this was:
Human papillomavirus (HPV) – The most common STI: The body’s immune system clears most HPV naturally within two years (about 90 percent), though some infections persist. While there is no treatment for the virus itself, there are treatments for the serious diseases that HPV can cause, including genital warts, cervical, and other cancers.Most sexually active men and women will get HPV at some point in their lives. […] CDC recommends that all teen girls and women through age 26 get vaccinated, as well as all teen boys and men through age 21.Overall in the United States, an estimated 6.2 million new HPV infections occur every year among persons aged 14–44 years (1). Of these, 74% occur among those aged 15–24 years. Modeling estimates suggest that >80% of sexually active women will have acquired genital HPV by age 50 years (56).
Holy smokes. I was utterly terrified.So, what does that tell us? Most of the sexually active people in the United States have HPV. Most people don’t know that they have it because it seldom shows symptoms. I learned that there are different strains of the virus. Some cause genital warts. Some cause high risks for cancer. Mine fell in the latter of the two.
My doctor told me that he needed to get a biopsy for pathology via a procedure called a colposcopy, also known as the most painful thing I’ve ever experienced. Take your worst menstrual cramps and multiply them by 10.
In the most humbling moment of my life, and in a true testament to the vow in sickness and in health, I asked my husband to come with me to my next GYN appointment. With a male doctor. I am so thankful that he sat there and held my hand through it.
My doctor read us the diagnosis from my colposcopy: CIN3, or severe dysplasia. My cervix had High-Grade CIN (Cervical Intraepithelial Neoplasia or abnormal changes in cervical cells), or (in layman’s terms) an infection that was one step away from becoming cervical cancer. CIN3/severe dysplasia is sometimes referred to as carcinoma in situ.
My next step? A LEEP procedure. In a nutshell, it is an outpatient procedure where a portion of the cervix is removed (burnt off by laser). I was scared. Not only because I was SO close to cancer, but also because the procedure made it possible that I could not carry a a pregnancy full-term without bedrest or a cervical suture. Splendid.
To the nurse who talked me out of bearing the procedure with only a local anesthetic: You’re an angel. My advice? Take the IV and get knocked out. Don’t try to be a tough chick by shying away from the pain meds. Definitely take the IV. (I was later told that my procedure took longer than expected because the lesion bled heavily and I needed stitches.)
It’s been almost two years since I had my LEEP in August 2011. Since then, I’ve needed a pap test every six months to ensure that the infection has not returned. If it does, I could need the LEEP procedure again. Last week I had my final biannual pap exam. I pray everything is ok. Then, and only then, would I feel comfortable moving forward with starting a family.
I kind of suffered in silence. Only really close friends knew about my LEEP surgery. This was not something I blasted on social media. Why? Because I was ashamed. Now I know that the general public is suffering from a lack of education on this topic. I was only 27. Had I skipped out on that exam today, I might not be here.
My message to women of all ages: DON’T delay your GYN appt, especially if you have ever been intimate with anyone. HPV can be transmitted even WITH condoms. It is a skin-to-skin transmission, so using a condome won’t protect you. Also, reach out to friends. Share your story. That’s 1 or 2 more people who you’ve educated.
After I shared my story with family and friends, all of a sudden, I realized I wasn’t alone in having scary pap exam results. This need not be a taboo in our culture.
I’d like to have a discussion about this. Reach out to me with questions in the comments section and I will reply in the comments section. If you have more personal questions, feel free to e-mail me, but I encourage conversations in the comments of this post to foster a better understanding.
Thank you for reading. I hope my story helps save at least one life.
Jaime says
Thanks for sharing this with all of us. I had an abnormal pap smear two years ago and this last year it came back normal, so you best believe I have that “normal pap smear” results paper posted up on my fridge! :)
Chris is like “you are so weird.” I hope all goes well with your last one!
Jaime
http://tobystailsblog.com
Lisette says
You better believe that when this test [hopefully] comes back “normal pap smear” it will be on my fridge!
Rae says
I never go to a doctor for 15 years after i had my boy for paptest til 1 day a co worker of mine reminds us to go and get myself check by a doctor. I never feel anything or something changes in my body but out of curiousity i might have something. My first paptest turned out to be a bad news to me, doctor found 3 abnormal cells on my cervix and referred me to another doctor and i went but the doctor said we had to wait for another 6 months in order to get a paptest again cos he said its common but not normal for women and it could go back to normal. I was terrified on my first pap but after hearing that it could go back to normal on its own made me feel atleast relief and hoping that it would go back to normal after 6 months.. Then 6 months later i went nack to my doctor and got paptest done again, i got a call after a week and the nurse said the doctor gound something and i need to go the the hospital near to our town to get more test.. I was scared and could barely talk while listening on the other line, the only thing id asked the nurse was when and time is my appt. I feel like do i really need to listen more on what she waa telling me and if i can just book the appt as early as possible i would but she said thats the only schedule that tbe specialist has in to the hospital. Now, i cant help but think that what is it inside of me? I knkw i shouldnt of ignoring it before but was to confident about my body that i dont feel anuthing or changes. I am so scared,. I am a single mom of 1 great son who is 15. I prayed that god give a long life to live and i still wanna see my grandkids in the future. I know that thinking too much wont help the situation but i cant help it.
Michael says
I love you for sharing this. I go twice a year for my checkups and so far, everythign has been fine. I can’t imagine how scary all of this was to hear and go through. I’m glad all has been well so far. My Dr said I *could* be vaccinated but I was over the age of it being covered by insurance and that it was entirely up to me but at this point (28.5), not necessary.
Lisette says
After you already have had problems with HPV, I dont’ think the vaccine really does anything. Unfortunately, the HPV vaccine was a relatively new vaccine when it could have been of use to me. I’m glad you’re ok!
whattheefff says
Thanks for sharing this! 2011 was a rough year for me, too. After an ovary removal due to a cyst, I, too, had an abnormal pap. I found out I had HPV and had severe dyplasia. I had a LEEP and am now faced with the fears of having only one ovary (I’m only 26, what if something happens to it!?) and the possibility of not being able to carry a child full term and the higher risk of miscarriage. I only say this so that you know you aren’t alone! Realistically, I know you know you aren’t, but sometimes it helps to hear from an actual human that can say “YOU AREN’T ALONE!”
I’m so happy to hear that you have a great support system with your husband. My fingers are crossed that your most recent pap will come back clean and you won’t have any further complications.
Thanks for helping raise awareness! Not all of us are quite as brave!
Jessi
Lisette says
Jessi–
Thanks for sharing your story, too! The risk for miscarriage really hit me hard.
I have always been a nerd, so I can tell you that having only one ovary will not hurt your chances of having kids. The one ovary becomes a “super ovary” and will do the work of two ovaries to compensate!
It took me a year to be able to share this. But it was also a year that I was praying that the infection wouldn’t come back.
Lindsey B says
Yikes!! I pray that your results come back normal and that everything is okay! It is definitely a scary thing to have to experience. I went through a similar experience, but fortunately my colopscopy came back “normal”. In the past two years my pap has come back normal, which I am so thankful for. I think a lot of young women take those paps for granted. And you have reminded me I need to make an appointment! :)
Megalin says
Crazy how you would talk about this today. I have an appt tomorrow and I’m scared to death because my pap in Nov came up “abnormal” and I also had to get a biopsy. it really is thee most painful thing ever. I had it in Dec and tomorrow is my 6 month followup :/ you’re a very strong person for coming out about it
Lisette says
I hope your results come back normal too!
I wanted to address it because it is NOT covered in the media! Cervical cancer is like a silent killer of women and it is TOTALLY PREVENTABLE!
Holly Grass says
My grandmother died from cervical cancer. I had a hysterectomy almost 6 years ago because of my high risk and I had already had pap tests come back pre cancer. I don’t regret having it done at all. I hope everything is fine from here out.
Lisette says
Wow! You are an everyday Angelina Jolie! I’m so glad you took that step and that you were informed enough to prevent cancer.
Thank you!
SMD @ lifeaccordingtosteph says
Both of my BFFs went through this exact same thing. Scary as hell. I hope you’re all good from here on out.
Patricia says
This post made me tear up a bit. I had no idea that it was that common. I’m glad you’re ok! I sure adore you and would be sad if you got sick. :(
Kristyn @ Carolina Fireflies says
I had something pretty similar happen back in 2008/2009. I too had the dreaded pap and then THEY SENT ME A LETTER (!!!) telling me it came back positive for HPV and I needed to schedule a colposcopy. I’m sure getting the phone call that you needed to come in to get the results from a doctor was just as scary but, really?, a letter? Looking back, I find it almost comical that I found out that way. My boyfriend at the time was sitting with me in my living room as I opened my mail and all I could do was hand it to him and let him read it.
Anyways, agree with you on the “worst procedure ever” with the colposcopy. I had to google what it was because, once again, I had found out via letter! I didn’t have anyone go with me, nor did I even tell my mom (because she didn’t know I was sexually active – long story short, she’s very catholic). Luckily my colposcopy came back normal (or maybe low grade, I can’t remember) so I didn’t have to have the LEEP but I did have to have paps every 6 months. I know the stress of waiting for those results!! I’ll say a prayer that this one comes back normal too so you can breathe a little easier!
The crazy thing with my experience is that I HAD RECEIVED THE VACCINE before I went off to college!!! I’m still not clear how it happened that I got it but I’m so glad I went in for the uncomfortable pap and found it early!
Thanks for sharing this with everyone! I definitely haven’t had the courage to on my blog but maybe I will now. Prayers coming your way! I’m not sure if you are planning on sharing your results on the blog but I’d love to know when you get your “positive” results back!
Lisette says
You had received the vaccine and it STILL affected you? So sorry friend!
Karrie Smith says
There are 4 strains of HPV that are heavily linked to cancer. There are a bunch of strains. Plus it’s a virus and can mutate.
Karrie Smith says
I forgot to say the vaccine only covers a few of those strains…the ones linked to cancer
Amy in Austin says
You are brilliant (and so brave) for posting this. I too have had the same experience, but never imagined being able to talk about it. Thank you for sharing this information, and for better educating all of us. Best of luck!
Gwen says
I’m so glad you found the courage to share your story and I hope others benefit from your experience. Keeping my fingers crossed that all results are fine from now on!
Megan @ From Megan, With Love says
Thanks so much for sharing! You shouldn’t be ashamed about what happened to you. The statistics are unreal! As soon as I had heard of how high they were, I immediately when and got my series of Guardasil shots. I hope this most informs more and more women!
Kimberly @ The Simplicity says
Thank you so much for sharing this. I know that sharing personal matters, especially in regards to health can be difficult. In college, one of my jobs was for an organization called Sex Out Loud. I conducted sexual health research and did peer-to-peer education. Sometimes I take that experience for granted because I learned so much and it’s to the point where I still get surprised that people don’t know about certain testing or the differences between STI’s and STD’s. I really appreciate your bravery in sharing this experience. Some of my sorority sisters thought it was odd that I would get tested every six months or so but I knew that with my body constantly changing and developing that it was important for me to go through the tests. I sometimes think that many of the stigmas that accompany sex discussions and testing, inhibit others from taking those important steps. Thank you again for your courage in sharing :)
Halie Renee says
Definitely brave of you to share this. I have a similar story, although mine wasn’t as severe as yours. I went to the gyno in 2011, and was told that I had some abnormal changes as well (the low-grade CIN), and would have to have a colposcopy as well. And you’re right – that was extremely painful. But my amazing fiance (only boyfriend) at the time, went with me to that appointment, and I’m so grateful for his support then. The scariness of my experience pretty much ended there after I got my results back – things weren’t completely “normal” but it wasn’t anything to worry about, as it should clear up on it’s own. I also had to have a pap smear every six months for the last two years, and just a month ago got cleared to return to only once a year check-ups. I’m still so grateful that it wasn’t anything more serious and I’m healthy now. I did tell my closest family and friends, but most people in my life know nothing about it. Maybe I’ll be brave enough to share more of my story about this one day too.
Lisette says
Please do share your story. I told one of my aunts. Turns out, abnormal cells was the very SAME reason she had a hysterectomy after her second child. And this was almost 20 years ago. I’m glad science has improved since then. She could have avoided such a tremendous surgery!
Rachel Silski says
Thank you for sharing this!! This is why people need to go have the test done…I think more people need to go then they think. I go every year and make sure all is in working order!
Lisette I know it took alot to post this!! Your a brave strong women!
Jana says
Holy cow. I can’t even imagine how scary that must have been for you! You are so brave for sharing this, and I’m sure there are some ladies out there who will benefit from your experience. I’m so glad you are okay. :)
Shelley says
Wow, how scary!! I’m glad you’re okay! I definitely think it’s time to get checked myself!
Nikki says
Same thing with me! So scary but so happy you’re ok!
thefussybritches says
There are over 100 types of HPV. The vaccine protects against the more dangerous types of HPV (the last I heard it was 4) that are proven to cause cancer. Even if someone is exposed to one or more types of HPV, it still might be a good idea to get the vaccine. Of course it’s up to you and your doctor.
Lisette, good for you for being so brave to post this. It is alarming how common this problem is and how many girls only find out about it after they have an abnormal test result.
Samantha Curtis says
They also discovered HPV cells when I was pregnant with Nolan. Zach was deployed and I starting crying the minute I had to tell him. I had a colposcopy as well but my results were the lowest grade. So glad everything is okay with you and for your bravery on sharing this :) xoxo
Rachel says
I don’t remember my colposcopy being painful – prob because I was focused on the doctor, intern and my mom looking at my lady bits. :)
Glad you shared your story! I have some stubborn friends who refuse to get yearly paps… I think it’s insane!
Kalyn V says
You are so brave for sharing this, Lisette. Thankfully, I am one of the lucky ones and have never had an abnormal result. But my Mom stressed to me at the young age of 16 how important it was for me to go every year even if I was not sexually active or my partner had not changed. I heeded her advice and have never missed an appointment, and thankfully never had any problems. Thank you for sharing your story. So many young women thing of they GYN as a taboo subject, but it is something that women as a whole need to be educated on, because our “lady part” health is so important, even at a young age and it can affect us the rest of our lives.
Jessica @ Wonder Whats Next says
Hi, Lisette! I just wanted to say thanks for sharing your story. This past December I had my first abnormal pap. My doctor acted like it was no big deal, but I was freaking out. Luckily, I tested negative for HPV (so still confused about what caused my cells to change). I agree with you on the colposcopy. OUCH! Now I just have to go back every six months until I get three normal in a row. Yippee… This also encouraged me to get the vaccine — something I hadn’t already done. My mom had a couple years that were very scary and similar to yours, so I understand your point of view. I’ll say a prayer that everything remains normal for you. <3
Amanda says
In England you don’t start going in for your yearly visits until age 25, which is incredible dangerous and ridiculous!
Christin Walker says
This comment has been removed by the author.
Christin Walker says
You are very very strong for sharing your story!! I went through the EXACT same thing at the EXACT same time! Except mine was in May 2011. I had the procedure and was clear for 12 months when the abnormal cells returned. There is no telling when or if they will come back, but it is possible! I just want to share with you that having babies is still a 100% possibility. I had my precious little girl in March this year and although I had to go get a cervical length check every 2 weeks (plus side more ultrasound pics) my delivery was completely normal. Full term pregnancy with no complications from the LEEP! Good luck to you and thanks again!
Beth Boone says
I know it took so much courage for you to share your story with us and for that I thank you!! Women do go through this everyday and hearing someone else’s story will definetely save a life!!
Emily says
Thanks for sharing your story!!
Miss Worrell says
thanks for sharing this, I went through the exact same thing last November and it was as terrible as you described… I have a daughter and we discovered it during my pregnancy, so thankful for her, not only has she been a blessing to me but because of her I became aware of what was going on in my body… I have a check up in about a month… hoping that things are okay..
Kaitlin says
Thanks for sharing this! When the HPV vaccine I was nervous to get it because it was so new, and my mom, who does mammograms for a living, said that from the talk she’d heard at work, we probably should just wait and see. I am 25 now and recently a gyno told me that even though her hospital was the one where it was developed, she decided not to get it and she didn’t think I needed to either. This is how she explained it to me — “You’ve probably already been exposed to it. You’ve been in a relationship for 6 years and are planning on marrying this person, you are already 25 and the cutoff is 26. I recommend just getting regular pap smears to make sure you don’t have HPV, but preventing it at this point is moot.” I’m just wondering what you think about that. I was surprised but it made sense to me actually. I’m not planning on being with anyone else and if he or I has it…well we’re past preventing it spreading.
Lisette says
Thanks for reaching out, Kaitlin.
I just want to preface this with: I AM NOT A MEDICAL EXPERT.
However, I do think it is CRUCIAL that young boys and girls are all vaccinated before they’re sexually active. Like 9 or 10, as young people are sexually active at younger and younger ages now.
I was past the recommended age for the vaccine when I found out I had one of the cancer-causing strains of HPV. So, for me it was a moot point. If you are younger than 26, I would get it…but that’s just me speaking with 20/20 hindsight. The flu shot protects against the flu virus and its deleterious effects (death). My reasoning is that the HPV vaccine prevents that same virus from causing cancer. So, why not get it?
Karrie Smith says
No offense Kaitlin, but you have your ENTIRE life to look forward to. If he cheated on you and caught it, you could catch it as an older adult. Or if you broke it off and got with a new partner that could introduce it to you? Why not get it to be safe, just in case? I don’t know why she said “you’ve probably been exposed to it”. How insensitive and ignorant to say. She would have to know EVERY partner you had and tested them. I’m an RN and my sister died from cervical cancer in ’10 just after she turned 29.
Bev Feldman says
I can only imagine how scary that must have been for you. It is unfortunate that there is a fear of how of people might react to this type of news, or pass judgement on you. Thank you for sharing your story, I agree it is important that we be on top of routine medical appointments.
Taylor Danielle says
Lisette, I’m so thankful you shared this today because I forgot to schedule my appointment for this year. I’m overdue but will be scheduling one soon! Thank you for feeling brave enough to share your story- it helped me :)
Kate Mothes says
thank for for sharing this — i admit i’ll always put off even routine exams like this because i figure, hey, what’s the big deal. but it’s a BIG DEAL. this was definitely a reminder to pick up the phone and make another appt. always better safe than sorry.
kate x
Rachel Murphree says
Thanks for sharing this. A lot of people don’t know how common HPV is, and it’s really not a big deal if you get regular paps. Cervical cancer is so preventable with regular check ups because they can detect and remove cells so quickly, if you’re going in regularly. You sharing your story will hopefully motivate other women to make their annual appointments and maybe even save lives!
Jenna {keep classy and sassy} says
You are incredible for sharing this story! I appreciate it so much! I was shy about sharing a story about a lump in my breast (i’m 28) but then I realized it could cause awareness for other women even if we are in our 20’s.
You are brave, I will pray for good results!
Sarah at Midwest Pillowtalk says
you are brave. and admirable.
and i enjoy that.
prayers for wonderful results!
Jessica K says
Thank you! This is such a big deal, and so many people are ashamed – don’t get checked. Think they are fine. I know you saved someone out there! Thanks! (I pray you are able to have very safe and healthy pregnancies!)
Krystal Butherus says
Just wanted to pop in and say kudos for sharing. Sometimes as bloggers we gloss over the details and miss out on sharing what is really going on in our lives. You’re a brave one!
Jennifer says
Thanks for sharing. I hope your results come back normal.
CortlandMB says
Thank you so much for sharing! I have abnormal paps, and my first one I almost died. I thought I definitely had cancer. Turns out it was nothing, but I have them done every 6 months now as well. It is so easy to put your health on the back burner, but the wrong thing to do. I’m glad everything turned out!
20somethingbusinesswoman.com
Jackie says
Thanks ou for sharing this! I was diagnosed 5 years ago with HPV as well, and while mine was a low viral load and never required anything more than monitoring, I was terrified but grateful that I caught it when I did. I am a big supporter of early vaccination with Gardasil because if it can be prevented early, it should be. I think women, especially those in their 20/30s, don’t pay enough attention to their health. I get my annual gyn appt, a yearly skin check by my dermatologist, and a yearly physical, and a bi-annual dental appt. it’s incredibly important!
Lisette says
That’s awesome Jackie!
Maggie says
I am so glad you are okay! Thank you thank you thank you for posting this. I just put a reminder in my phone to make an appointment with a gyn tomorrow. I have been putting it off because of my move, and you gave me the kick in the ass I needed.
I was lucky that I was able to get the HPV vaccine when I was still young enough, but I am sure that isn’t surefire protection.
Thank you again. You are very brave and I am very glad you are okay.
Jess Casey says
What’s crazy about HPV is that you don’t dont even have to be sexually active to get it. It lives on counter tops and door knobs. It’s a contact virus! Makes it so much more serious knowing that you can’t control it! I’m glad your ok!
Karrie Smith says
It’s passed from skin to skin contact. You can get it from oral contact or genital rubbing. You can get it from from contaminated sex toys (actually all STIs), but you can not get it from counter tops or door knobs. source
jackie jade says
so so proud of you for sharing this! things like this can definitely still be taboo and I know there was a lot of controversy about having younger girls get the hpv vaccine since they thought it might make them more promiscuous. hopefully in the future, all girls will get it and it won’t be taboo at all. hope that you have raised awareness and everyone will get their regular checkups!
— jackie @ jade and oak
Kelly {Sparkles and Shoes} says
This is SO brave of you to share, I am so glad you are doing better!
Ashley says
Wow girl! Totally applaud you on sharing this. I had the exact same thing happen to me around 2010. I strongly urge the pap every year as well, and the guardasil shot along with it! Cervical cancer is no joke!
Kenya says
I had the same issue where my gyno found some pre-cancerous cells and I had to go get the procedure done where they go in, while under, and scrape the whole uterus to get a sample and send off to pathology. Thankfully it came back as OK and nothing to worry about, but I did have to start going to gyno every 6 months to keep an eye on it. I totally feel you. It is super important for woman of ALL ages to get checked yearly. Early detection is the best detection.
Molly Kay says
Thank you SOO much for sharing your story and your knowledge. I actually have an GYN appointment tomorrow afternoon and had thought about canceling because I would rather do anything else with my day than that Drs. appointment. I’ll definitely be in that waiting room tomorrow with bells on!!
Danielle Villano says
Thank you so much for being brave and posting this on your blog. This was such an informative post, and I think next time I won’t complain about the pap!
Best,
Danielle
http://awriterinlove.blogspot.com
lost in travels says
this is SO important and i think we as women need to stop being so shy and embarrassed to talk about it!
Gina Howie says
So good of you to share your story. You will help many just by speaking out and inspire women to get their paps done.
Wishing you all the best!
Victoria Mason says
Thank you so much for sharing this! I had a very similar situation back in 1998. I was in my sr. year of college and found out through my GYN during a routine visit. She didn’t explain anything just said I was positive for HPV and it could lead to cancer and that in fact, I did need to do something soon. It was awful. I went home and cried in my parents driveway, I was 21. I had LEEP twice. Once in 98 and again in 2003. It’s not fun but now I feel no issues when it comes to getting paps! I’ve been fine ever since 2003 too.
What you are doing is so valuable. Thank you!
Lisette says
The LEEP twice?! Holy moly! I’m so sorry Victoria!
I cried too. I felt “dirty” but the more research I did, the more I realized how extremely common it was!
Areeba says
I am glad that you knew everything on the right time. You did well to write it here, maybe this would save more than 1 or 2 lives ;)
Serena Lily Marie says
Thank you so much for sharing this. I don’t think enough people understand the importance of these tests. We need more people to speak up like you! You’re awesome for doing so.
Tina Byland says
So, to add to the convo, just to contribute some new research that doctors are using, it turns out that most of the time (80% of the time) our bodies will fight off HPV just like any other virus. The new recommendation is to get a pap every 3 years because what was happening is they were sending girls to get tests and procedures when their paps turned out abnormal and in many cases it caused more harm than good. So they’ve found that there’s this generation of girls who were over-tested and over-procedured who now are having fertility problems when 8/10 chance is their bodies would’ve done it themselves.
Now, that being said…. you definitely needed the procedure! I just thought that was interesting to find out (just found it out this week!!!!)
Lisette says
Tina–
Yes, most of the time our bodies fight off the HPV infection. That’s very true for many women who have a low grade dysplasia (CIN1). When you’re dealing with severe dysplasia (CIN2 or CIN3) it’s very risky letting it fester.
I almost did not go through with the LEEP when I read those same statistics. But my doctors highly recommended it, stating that if left untreated it could turn into cancer.
Karrie Smith says
I think the every 3 years is ridiculous. Sexually active women with multiple partners need to be tested at least once a year. I think the insurance companies are trying to cut costs. While MOST women may not need one every year, there are many that DO and will not be caught in time. My sister passed from cervical cancer and when she was diagnosed she was already at stage 3B. She didn’td get a pap smear in 2-3 years. That’s how aggressive the strains that can cause the cancer grow. The same thing is true about HIV. If a women secrets a lot of fluids during sex, there less of a chance that she could catch the virus opposed to a women that is drier and may have tiny tears in the capillaries *(blood stream) that the virus can get into. Because gay guys have anal sex, the small anal tearing that occurs during anal sex with the large number of blood flow in the anus, is why it was determined that it was the “gay” disease. But if you are healthy, and it’s a low number of virus, your body can fight it off.
Karrie Smith says
My sister died from cervical cancer just after she turned 29 on Aug 7, 2010. It was stage 3b when she was diagnosed in Jan ’09. SO many people have HPV and don’t even know it. Thank you for posting this.
Justine B says
I just wanted to thank you for writing this. I read this on tuesday when you posted and then yesterday, the very next day, I got a call from my doctor who I saw 6 weeks ago. She was calling to tell me that I tested positive for abnormal cells and HPV. I am sick to my stomach as I am writing this and so incredibly scared. I went back and re-read what you wrote as well as all the comments up until now, but its hard to feel better about it because I am in the unknown at this point. I am so scared to have to do a colposcopy. I don’t do pain very well at all. Its also hard because I have been with the same person for over a year and a half and last year at this time I tested fine. I know that it can lay dormant for months to even years and I completely trust him but still, there is always that question in the back of my mind. I am praying that all turns out as well as your story and I am so thankful that up until now you have been fine. I hope your final test turns out ok!
d4b3e09e-4551-11e2-8aaa-000bcdcb8a73 says
I found out I had HPV when I was in my teens. I know awful. I didnt really understand it back then and I thought it would go away. The doctors made it sound like it would go away. I shoulve asked more questions. I am in my mid 20s now. I have had 2 abnormal paps in the past couple of years. So I had to do the whole process too. Every 6 months. I am back to once a year now. So hopefully it stays that way. Also I get cyst in my breast too. I am more prone to them for some reason. I have no history of breast cancer in my family so thats good. But its still nerve wracking. I have had 2 cyst removed. Benign thankfully. Its rough being a woman….
Sarah says
Thanks for posting this Lisette. I realize I am late to this party but your story is my story OTHER than I had already had my children. Why is there such a stigma to HPV? You should have seen the look my mother gave me when I told her what had caused these precancerous lesions. Something that probably occurred many years ago. Regardless, I was very very lax about scheduling my Gyn appts until this happened. Now, I never miss. Oh, and I have 2 beautiful daughters, 19 and 22. I didn’t think twice about vaccinating them years ago. It was for their future. Done and done.
Chelsea Davis says
I am so glad I found this story! With that said, I completely feel your pain. I went in last August for my annual and was told that I had an abnormal pap, but they said I tested HPV negative (whew!) I had to come back in 6 months to have my pap redone, this time I wasn’t as lucky. I was told I tested positive this time…my first thoughts (and words) were, “but I had the HPV vaccine in high school.” My nurse then explained that the vaccine only protected against the 4 most common strains of the virus, I literally felt like my world had crumbled around me. I was so scared, but luckily my nurse sensed my fear and calmly explained that while I had the high risk type (the cancer causing one), it is preventable. I have to have a pap done every 3 months now and a biopsy every year. I was relieved that it could be prevented as long as I kept to my appointments. The biopsy had me worried, I’ve heard numerous horror stories about them, but mine wasn’t that bad. It was just a tiny pinch, I believe the wait for the results were a thousand times worse! lol I asked the doctor what the results would mean and he explained that if they came back mild, then he’d just continue to watch it. If it came back moderate or severe, then I’d have to go into the OR and have my cervix scraped. It sounds painful, but they said I would be asleep so I think that eases my mind a bit. The thing that bothers me the most is that I’ll never know where it came from, I want to be able to warn the guy so he’ll know what exactly is happening to the future girls he’ll be with. Even though it is becoming more common and it is livable, I wouldn’t wish this on anyone. At first I didn’t know how to tell anyone, so when I saw my mom after receiving the results, I just blurted it out. It took a minute or two of silence as she processed it, then she said that we’ve been through worse than this with my health so she knows we could get through this too. My best friends have been extremely supportive and have helped answered questions that my doctor wasn’t completely clear on (they are both nurses themselves). I have a wonderful support system that I know will get me through this.
Lisette says
You better believe that when this test [hopefully] comes back “normal pap smear” it will be on my fridge!
Lisette says
After you already have had problems with HPV, I dont’ think the vaccine really does anything. Unfortunately, the HPV vaccine was a relatively new vaccine when it could have been of use to me. I’m glad you’re ok!
Lisette says
I hope your results come back normal too!
I wanted to address it because it is NOT covered in the media! Cervical cancer is like a silent killer of women and it is TOTALLY PREVENTABLE!
Jessica F. says
Thanks for sharing such an important topic…one that is still not a topic that gets the attention that it should.
In 2011 I was diagnosed with ovarian cance and had a complete hysterectomy, oofrectomy and removal of my cervix. I am on my way to living a long, healthy life after cancer but find it so frustrating how little attention uterine, ovarian and cervical cancer receives, especially when some types are preventable.
It is so important to be vaccinated…I have vaccinated my eldest and plan to vaccinate my younger two boys. They need to be educated, so that they can educate their friends and someday their children.
I’m glad you are healthy and wish you all the best, if/when you decide to start a family.
Lisette says
I agree. It’s something that’s not spoken about and it is SO SO important! I actually have my very last biannual PAP exam this week. I needed to have them done twice a year for two years after LEEP surgery to ensure that the squamous cells didn’t return. It’s something that I don’t want to think about possibly affecting our ability to have children, but I rather know that everything is okay now than find out I need a repeat LEEP during pregnancy!
I’m so happy you’re being so proactive in vaccinating your kids! Your kids have the best advocate around! Take care!
Niki Caron says
Wow, I don’t know how I missed this when you first posted it. But you are definitely not alone. I have a close friend who went through the exact same thing – she had the high grade CIN and the procedure too. I think in general, HPV is much more common than people realize! And she’s pregnant, and pretty late in her pregnancy, too! So there’s definitely hope :)
Ali says
So glad to see this blog! I have been struggling with abnormal papas for 4 1/2 years. I am 24 and have been with the same man for 6 years. Long story short I have had a total of 7 colposcopy all with biopsies. 2 cryotherapys and I went back for my 6 month follow up 2 weeks ago to find out that not only has it not gone away but it is now spreading. I had lesions in the 9,12,&1 o’clock area all CIN 3. Now I have those plus 3&6 o’clock at CIN I. I know the stress you are feeling! I’ve been avoiding the LEEP because my Gyno told me my lesions are so large that it would take most of my cervix and could potentially cause infertility (scarring will be more and make it very hard to get pregnant!)
Glad you are raising awareness and hope that everyone realizes that it isn’t anything to be ashamed of! & it’s not always HPV that is the culprit. In my case I have been tested multiple times and I always come back negative. So who knows what’s causing it.
Hope your rests come back clear and stay positive!! It’s what’s kept me sane all these years
Lisette says
Thank you so much for your kind words. When I was diagnosed, the first thing I took to was Google. I didn’t know it at the time, but what I found online was another woman’s blog describing her fears about it.
I’m so sorry you’ve had so many procedures done because of this. It’s so scary. I hope your future tests come back clear! hugs.
Teagan says
It’s always great reading other peoples stories and knowing that other people go through the same thing. I was first diagnosed with CIN 3 in 2010 at the age of 26. I went from having a clear test 6 months earlier and went to the doctor with an abnormal bleed. She wasn’t going to do another test because my last one was clear however something changed her mind so she did another smear and what do you know i got the dreaded phone call at the end of the day on a Friday saying you need to make an appointment to see your doctor (Why they do that at that time i don’t know so you are left freaking out the entire weekend). I ended up having to get a colposcopy and biopsy and ended up having leep surgery not too long after. After a few years of 6 monthly checkups my smears were clear however colposcopies where still a little off. I had my final Gyno appointment and he said i can now go back to my GP for the 1 yearly tests.
Last week i had my yearly checkup and when the test was taken i had a bleed which left me feeling a little uneasy. My doctor said hopefully you wont have to come back for any results because it will be clear. I got a text yesterday afternoon saying you need to make an appointment to see your doctor for your results. Right away i knew something was off once again. I went to the doctor secretly hoping it would just be an inconclusive result due to the blood, however my doctors opening sentence was i wish i didn’t have to tell you this, so right away i asked if it is CIN 3 or worse, turns out I am looking at CIN 2 – 3 at this stage based on the smear and am now playing the waiting game waiting for the hospital to call for an appointment for another colposcopy.
Once you get the news again it is almost not as scary in one aspect but then it is scarier at the same time. My fear is not only the fact that cancer could develop but I am terrified on the children aspect side of things. As I am only a week off 30 I haven’t started a family as of yet, i have a gut feeling i am going to need another surgery even though i haven’t had the more extensive test yet but you just can’t help but wonder. I hope that having multiple surgeries you can still conceive and have a normal pregnancy even though it could quite possibly be high risk.
All I can say to all the women out there to never miss that appointment even though it is an uncomfortable experience it could be the difference between life and death.
Jack says
Thank you for sharing your story. May I know how long you had to wait after getting the abnormal pap (or the CIN3 colposcopy) to get your LEEP done? I may have to wait 6 months after my abnormal pap and 4 months after my CIN 2/3 for one and I’m afraid it is too long. Thank you.
Crystal says
The same thing happened to me . It was in 2011 I was pregnant with my twins at the time . It was my first exam while I was pregnant with them only they couldn’t do anything while I was pregnant because it was too risky with any pregnancy let alone a twins pregnancy. So I had to wait until I had them to do the cone procedure while I was put to sleep . Since then I have had to go back every 6 months .I went last Tuesday and today I got my results now I don’t have to get one for three years yay !
Lisette says
Yay indeed! So glad to hear that you’re doing well! And yes, doing anything while pregnant, even more so with twins, would have been entirely too risky. Cheers to good health!
charlie says
This has been an eye opener. My first Pap smear result came back abnormal and HPV positive + CNI1, ive been so stressed. the second one i did after came back normal, i am still stressed as i just feel pain on my lower back, should i be more worried, i am even scared to go to the doctor. Even being in a relationship scares me off
Lisette says
If the second one came back normal then I think the infection cleared up on its own, which is pretty common. You may want to check about your lower back pain though. It might be an unrelated pain. I’m not a doctor but I just thought I’d share my story with others.
Hope you’re doing well!
Ashlee Vidrine Daughtry says
Hey !! Well nine days ago I had a leep and D&C. My doctor called me to come in and I had CIN 3. He referred me to another gyno who Specializes in cervical cancer. That appointment is on few 24th. Im just wondering why do u think he referred me to another gyno and what do u think the next step is?? What determines whether or not they do a cone? I’m just so worried !!!!
Bianca says
Hi my name is Bianca I’m 24 years old I have 2 kids and still with there dad of course. About 3/4 weeks ago found out I have hpv the kind that grow warts. I’m so scared I cry everyday now I’m no longer happy because I have this and my boyfriend prob has it even though its not showing I’m worried that something can happen to both of us because of me. Did I ruined our lives will I ever be able to have more kids. Is this virus gonna be in my body forever? I’m emotional even writing this message I’m crying.
Bianca says
Hi my name is Bianca I’m 24 have a boyfriend we have 2 kids. About 3/4 weeks ago found I I have hpv. I’m so scared I cry everyday to my mom on the phone I cry to my boyfriend I’m so emotional. I feel like I ruined my life I feel like I can never have kids again. I’m scared for my boyfriend because he has it even if its not showing. I was a very stupid young woman in the past in now I can’t forgive myself but my boyfriend been by my side.
Bianca says
I don’t know if I’m posting this right.
Helen says
My name is Helen and in 2015 I was diagnosed with genital warts. The moment I found out about this I broke down and cried. When first diagnosed I could not believe that something like this could happen to me. I had three partners my whole life and serious relationships with all three, worst of all I found out that my current boyfriend (who I had been with for a while) had cheated on me and had not used condoms in the process. I felt disgusting. I can’t say how many treatments I had to get for my genital warts. The number one thing that helped me through this process is contacting and reading about people who were going through the same situation and most of all, i want to thank dr. Brown that helped me clear my warts. I don’t know what i would have done without her help. The reason I want to share my story though (after being clear of warts) is that I know everyone reading this is going through such a hard time right now. HPV is a disease, we don’t want to contract but we contract many diseases through out our lifetime and they should not define us. There is so much support for people who went though this. I know what it is like to be diagnosed and feel alone, but believe me you are not. Join support groups, keep busy, do your research and most of all stay healthy. The pressure to smoke and drink during this time is tremendous, but concentrate on being healthy, I can honestly say that once I was the most healthy was when I finally got rid of these warts. Btw if you want to contact dr. Brown, here’s her email [email protected]
Trish says
I had cancer 20 years ago.. My story sounds exactly like your but I had no clue mine was hpv. Wish I would of know but my doctor fired me because of my mom not believing in immunization..I’ve done research ..The communities has threatened me and I understand why ..I would never hurt people on purpose but it made the doctor more money he knew what he was doing..
Alicia says
Hi.
So about a 11 months ago I went for my routine pap smear, assuming that everything would come back normal, as it always has. My husband and I were just married and we both want to be parents very badly. We decided to hold off on trying until after our honeymoon. About 2 weeks after my exam, my doctors office called me and told me I had traces of HPV and abnormal cells, and had to go back for a colposcopy. Thankfully I have a very supportive husband who dealt with me as I lashed out at him, blamed him for my condition, and used him as my personal punching bag while dealing with my anxiety. I know it wasn’t necessarily him that I contracted it from, as my doctor said my body already fought it off, but he could see that I did have it. After the colposcopy, my doctor called back to say that I had high grade abnormal cells and there are 2 options: treatment with Cervugid Ovules and Isoprinosine Tablets or LEEP procedure. I have a great doctor who takes extra steps to ensure his patients are fully informed. He brought me in about 2 weeks ago to give me all the information I needed. My main concern is that the LEEP procedure and/or the dysplasia will affect my fertility so i started the treatment CERVUGID (vaginal suppositories) + ISOPRINOSINE (antiral oral use) first and if the treatment will not work for me to do this LEEP. Seeing people put up pictures of their sonograms on social network makes my eyes well up with tears. It is not that I am not happy for them, it is the thought that this condition may prevent me from having that. I am just a ball of emotions and anxiety and I just have no idea how to handle it all. My husband although supportive, does get upset by seeing me upset and I am trying my absolute best. My doctor says he doesn’t see any reason why I should not be able to have a baby, but the unknown is still unbelievably scary.
Doctor told me that treatment will cure abnormal cells and it lasts about 9 months to complete full cycle of treatment.
After several months of completing treatment i came back to be retested. They did again Pap test, Colpo and HPV test. All the tests now came back normal and since then I’m free of HPV.
This doctor really saved my life.
Without my husband’s support I do not think I’d be able to go through this experience.
Kaytee says
I don’t know if anyone reads this but I am laying here in the middle of the night writing down all the questions I have for my MD appt in two days.
I was having some pain during sex (turns out to be just slight tears at the opening of the vagina from accommodating a larger male penis) and I thought, I’m not due for another Pap for a year, but why not since they’re down there anyways.
Well Pap-low grade…. colposcopy with two biopsies=Carcinoma in situ!
I was flabbergasted- I had had the vaccine, I 100% used condoms, I don’t smoke, I didn’t have sex till I was 19.
This all happened within 3 mos of being with my new boyfriend (He has been nothing short of amazing and supportive).
I was scheduled for a LEEP- which was incredibly painful, worst cramps the next day. Had to wear pads for almost three weeks. -I wish I had been offered the IV.
Two large ( greater than 1cm depth) pieces were removed and sent to patho. The margins came back clear- but confirmed CIS with gland neck involvement.
So tomorrow I go in for my follow up appt- another time to be probed to be checked in upon.
I should add that I have PTSD from an abusive relationship in college.
While all this is very hard and traumatizing to me- dying of cervical cancer is not how I’m going out…. I will show up to all of my follow up appts… and will hope for the best.
It does feel good to share this with other women who know what it’s like to go through with it. I have only been able to tell the people closest to me.
Thanks for listening and let’s keep our fingers crossed…. I can only imagine what would have happened if I had just waited another year for the 3 years they recommend.
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HealthPlease says
Extremely important work, Lisette. Cervical cancer also frightened my close relative. After the imaging and lab tests she was made aware and PAP smear screening brought some hope.
Courtney Goree says
I am about to have the LEEP procedure they only told me to take ibuprofen an hour before no mention of an iv? But my question is actually were you ever or have you yet gotten pregnant and been able to carry the baby to term?
Thank you I’m really worried I have high grade cells on 60% of my cervix
Lisette says
Courtney, I’m not a medical professional, but I can tell you that I could not have gone through a LEEP without anesthesia. The colposcopy alone almost made me black out. Perhaps they’re using a local anesthetic?
I have not attempted pregnancy yet, but my during my most recent exams my doctor has told me my cervix looks of a good length. I was never told what percentage of my cervix was affected, only that they strongly encouraged me to get the LEEP to prevent it from turning into an aggressive cancer.
Best of luck! Keep us posted!
Kristi says
Thank you thank you thank you! You’ve put my mind at peace (at least for this late night of scouring the internet tonight, ha!). I have undergone a colposcopy and just got results tonifht of CIN3 with LEEP to treat it. Sharing your story has made me smile because I’ve felt some of the same feelings you had. I’m definitely taking your advice on the anesthesia for LEEP. During the colposcopy I about jumped off the table it hurt so bad! I also plan to bring my husband in this time around- I thought that was taboo until I read your blog!
Nicole R Giles says
Sooo Thankful to this story and the comments. I have a leep scheduled for the end of this month. I have been scared out of my wits. I’m 26, almost 27 and want children desperately. I was told I had mid grade/ moderate cells and they recommend the Leep. The biopsy to me didnt hurt terribly, was VERY uncomfortable and I did faint with no control. This time with the leep I will be bringing in my husband to hold my hand- they are giving me a anesthetic shot….. Which I am also afraid of- I HATE NEEDLES. I am praying and praying I will have clear paps after this procedure and wont need further treatment. I was told to wait at least a year after the procedure to try and have children… which was hard because I was trying for one when I was diagnosed with HPV and this process began a few months back.
Hoping my cervix will still be strong enough and all heals and is clear.
Ana says
Im having a leep this upcoming friday im scared ashell to get worse news after this has been done. how long after u found out did they do the procedure??
Sara says
I actually have to go get this procedure done for the same reason. High grade cells were found when I was pregnant and I didn’t know I had all of these issues going on until then. I am currently waiting to be scheduled for a Leep and they only talked about giving me lidocaine. Have you had any issues since the procedure? I am worried about it coming back after and if it will cause me not to have children again since I just had my first 5 months ago. I guess I am just curious to see how everything has been for you since then. Thank you for sharing.