The Powerful Act of Sharing Our Stories About Women’s Health

Health & Wellness

The Powerful Act of Sharing Our Stories About Women's Health
Photo by Brittany Bendabout on Unsplash

It was another Thursday. And I was getting weighed by a nurse with a saccharine tongue, while simultaneously looking above the number on the scale, hoping I was giving off an “I’m totally cool with my weight” vibe fighting through a listless gaze.

“Is it too early for you to try to give us a urine sample?” is definitely an odd question to ask a stranger at nine in the morning. But, the nurse hummed the sentence like a perfect bird while she led me to the bathroom. And I, angry to be there with a happy stranger and my dumb vagina, said, “I haven’t had any coffee, but I’ll give it an old college try.”

In 2012, I had my first abnormal pap smear. The entire ordeal was harrowing and awful. I got the call from my doctor while I was at work, cried in the stairwell, and left early. I thought I was going to die. From there, I got my first colposcopy and tried to to see myself as brave beyond the disgusting. I blamed myself for everything and wondered deeply about the human condition. Bad news is just part of living. And it’s a reminder you’re alive. The test results came back negative. And the next year I came back and went through the process all over again. I didn’t cry in a stairwell again but I’ve felt this leathery, stubborn growth in my chest get bigger every year since.

Every February since 2012, I’ve had an abnormal pap smear. I think there’s been a year in there somewhere that I went clear but the abnormal cells keep popping back up. Most have ended with a colposcopy and a negative test. But, while I’m always grateful my body fights, I can’t help but feel weak when the cells keep coming back. I want to remove them, but surgery would put me at risk for having children in the future. 

Bad news is just part of living. And it’s a reminder you’re alive.

Bad news is just part of living. And it’s a reminder you’re alive.

Bad news is just part of living. And it’s a reminder you’re alive.

I try to tell myself this mantra every time. But, the unknown can be so discouraging. Even if the only thing we are promised is life and death. I’m not sorry for being so blunt. It’s the truth. And the truth is hard.

This year, however, the pap smears, colposcopies, and doctor visits took an odd twist. The cells became a little more threatening. I think my doctor called the cells a “Level 3” but I can’t entirely remember. If you’re talking about my vagina like a video game, I’m worried. My body just wasn’t healing the enemy cells. And they were getting worse. My doctor told me on the phone, “I know you’re frustrated. But this is why we watch every year. In women, especially your age, cells can turn into something cancerous when we aren’t aware; and we want to make sure we’re catching the bad ones.”

Next, I instantly scheduled a LEEP. LEEP is short for Loop electrosurgical excision procedure and, to put it scientifically, the process uses a wire loop heated by electric current to remove cells and tissue in a woman’s lower genital tract. While it sounds awful, indeed it is. But when I walked into the doctor the morning of the procedure, I didn’t know that yet.

A machine that looked like a backup generator, made in the eighties, welcomed me. The nurse and the nurse in training gave me a quick intro to the procedure while checking my blood pressure. They told me the machine sounded a lot like a vacuum. And that I might feel the electric wave in my legs. And, like a restaurant would tell me they’re out of the special, that the “shot of adrenaline is honestly the worst part.”

Excuse me? A shot of adrenaline? In my….vagina?

I instantly panicked. They had to get me crackers and apple juice. And let me tell you, eating crackers quickly before someone shoots your cervix with numbing medicine and adrenaline is not an easy task. The sound of the machine made me feel like I was in a dentist’s office and the shot of adrenaline was the worst. I felt like I was about to give a million presentations in my gut and then my chest. My nerves tumbled out of my fingertips and I imagined my purple toes under the bare fluorescent lights.

I am so frustrated by the lack of power and transparency around women’s health and the quiet stories that surround them. Why do we have to feel so alone?

While I sat there dealing with my sudden adrenaline rush, a wire loop—one that looks a lot like something you’d blow balloons out of on a beach—sliced out the abnormal tissue from my cervix, enough to cover the size of a fingertip. From there, my cervix was burned to stop any bleeding. Burned!! How did I not know this happens regularly to women?! And now to me!? AND WE GET NOTHING BUT A TYLENOL AND A DIAPER TO WEAR OUT OF THE HOSPITAL?

It was over almost as quickly as it started, but I had to lie there while the adrenaline rush subsided. And, like usual, the doctor handed me a jumbo pad packed tightly in a cardboard box and said she’d call me when she got the results. I went home fifteen minutes later with strict instructions not to have sex, work out, or douche my vagina for two weeks. Perfect, since my general stress level and hygiene rules would not allow me to do those things anyway.

Since my LEEP procedure, a dozen realizations started lighting up for me. They were real and difficult. I’ve been dealing with abnormal paps, and the procedures that come after them, privately for nine years now. I wrote about the stigma behind talking about women’s health in an article for Wit & Delight a few years ago called “The Abnormal Stories of Loud, Beautiful Women.’‘ And I want this to be my even louder response. A feisty follow-up, if you will. That’s why I shared my story above. I am so frustrated by the lack of power and transparency around women’s health and the quiet stories that surround them. Why do we have to feel so alone? Why aren’t doctors talking to us about our health differently? Why is it costing us so much money? The women’s health experience needs to be heard loud and clear. (Writer’s Note: I realize my lifestyle and experience do not account for many more women who have harder and less privileged stories than me.) But, for now, this is mine.

For one, abnormal pap smears are extremely common in women. According to Roswell Park Comprehensive Cancer Center, of the three million women who get an abnormal pap smear a year, less than one percent will be diagnosed with cervical cancer. Even more, for something so common, yearly colposcopies cost me anywhere from $600 – $900 out of pocket every spring. If I didn’t have insurance, each one would cost me thousands. Doctors always recommend monitoring for cervical cancer and I haven’t missed a colposcopy since. When this started in 2012, I wasn’t making a lot of money and had to start a payment plan. It took me a year to pay the bill off—just in time for the next one.

I also recently started talking to my doctor about having children. It’s something I felt was proper to start discussing, even though I’d been sitting in a room with her head between my legs with a cotton swab every year anyway. We discussed when I’d prefer to go off birth control and she mentioned she was proud I didn’t smoke cigarettes. “Additionally, if you want to get pregnant faster, you could always lose 5-10 pounds.” She said this pretty quickly, and swung into the blood testing topic next, but I sat there with my tongue showing, counting my rolls under my paper robe like counting sheep before bed. 

She handed me a few brochures that looked like they were printed in the early nineties, even though the publish date read 2002. One of them said “Cystic Fibrosis Screening and Diagnosis” and the only thing I could think of was yet another “fault” I could be responsible for, finding out I was a CF carrier. Among everything else.

The thought of getting pregnant instantly made me feel like everything could go wrong. And I found guilt everywhere in pregnancy. You’re too fat. You drink too much. You smoke. Do you wear your seatbelt? Your genes could pass disease. Something could be wrong with your blood. Don’t get those abnormal cells removed. Do get those abnormal cells removed. Monitor, monitor, monitor. Money, money, money. 

Bad news is just part of living. And it’s a reminder you’re alive.

I do strongly believe that. And if we know each other’s stories about women’s health, we can be so much better. Bad news is a part of living and if we can’t hear the bad news that surrounds our health, what are we doing? If I would have known the details of a LEEP procedure, I would have been better. If I could have known before about the commonalities of abnormal pap smears, I would have been better. If I would have known that my weight isn’t the reason I may not be able to have children, that building a family isn’t entirely on my midsection, I would have been better. We can still be frustrated by the lack of empathy pouring through women’s health. But, we can be better to change it.

I don’t know how to change the polite, quiet hum of women’s health right now. But, I hope my story and this moment you’re reading through it can start a conversation strong enough to make us louder within our many stories.

It’s a big order and I don’t know how to change the polite, quiet hum of women’s health right now. But, I hope my story and this moment you’re reading through it can start a conversation strong enough to make us louder within our many stories. They aren’t the same stories but we deserve to hear them because they aren’t the same. I have written this in some capacity so many times, but stories keep us alive. 

You are not alone in your health journey. You are not alone on that crinkly doctor’s clinic paper, sticking to your sweaty butt cheeks. You are not alone when you slap a strip of tape on your thigh so an electric current can ripple through your ankles and knees. You are not alone when your doctor says the results came back showing mild dysplasia and clear margins; when you wonder what that means and where that will take you next year. Or the next. You are not alone when the doctor tells you that you can get pregnant faster if you lose some weight. And, most importantly, you are not alone when you feel like you are.

BY Brittany Chaffee - July 15, 2021

9 Comments
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Kari
July 15, 2021 1:11 pm

Yes to all of this, and more sharing of stories like yours! Thank you so much for writing this article. I also had an abnormal pap and had to have the procedure you mentioned – I was 22 and barely remember receiving any explanation before they did the whole thing. I do remember feeling incredibly judged by the doctor performing the procedure, which was less than ideal.

This is on my list to read, in case it’s interesting to others:

https://www.goodreads.com/book/show/53005266

💪🏼

Brittany
July 20, 2021 10:20 am
Reply to  Kari

Kari,
I can’t thank you enough for reading and sharing your story here. I can’t believe we’re left so misinformed about the procedures that so affect our bodies. Hopefully there will be more transparency about them in the future; until then, we’ll keep sharing our experiences. Definitely saving that on my reading list as well!
xoxo,
Brittany

erin
July 15, 2021 1:34 pm

My mother had this precise procedure in the early 70s with the same level of information and empathy that you experienced. Her doctor gave her no warning and didn’t even show her what he was doing or what the machine looked like. He handed her a pad and told her to wait 15 minutes and then she could go back to work. He left the room and she passed out naked in the floor. When she told me her story years ago, I was stunned and naively believed it probably wasn’t done with the same lack of care these days.… Read more »

Brittany
August 3, 2021 8:52 am
Reply to  erin

Thank you for sharing this story, Erin! I can’t believe this treatment (lack of care) has been going on so long. I hope it gets better soon – and I know these stories will help. Sending love!
xo,
Brittany

mary
July 20, 2021 8:19 am

Thank you for sharing, I too have had abnormal PAPs for the past seven years. I had a colposcopy two years ago, they didn’t find anything so no biopsy was taken. This year, the PAP showed possible HGSIL, worse than any previous PAPs. So back I go for another colposcopy and I’m afraid this time they may find abnormal cells warranting the dreaded LEEP procedure. Despite pretty healthy living, I can’t kick this HPV 16 thing and it is so frustrating, I feel so helpless against this virus. As my mid-wife daughter in law told me, many times the procedure… Read more »

Brittany
August 3, 2021 8:54 am
Reply to  mary

Hi, Mary. This is exactly exactly how I feel. Like I can’t shake it – my body the inevitable enemy for not healing things on its own. Sending all the light and truth that our bodies CAN heal, despite our fear. I hope the care gets better for us soon!

Audra
July 23, 2021 8:18 am

This is so powerful. Thank you for bravely sharing your story. We all need to share our stories more, because our voices together are strong and can bring about change. When I was in my mid twenties, I started having vaginal pain. I went to 3 different gynecologists, who diagnosed me with things like bacterial vaginosis and yeast infections. None of the medications they subscribed worked, and this went on for 6 months before someone recommended a pelvic pain specialist. He diagnosed me with pudendal neuralgia, a nerve pain condition that can be treated with antidepressants. My pain is manageable… Read more »

Brittany
August 3, 2021 8:56 am
Reply to  Audra

Hi, Audra. Thank you for sharing your story too. It’s impactful because we have been left in the dark for so long by what other women are going through with their bodies. And shouldn’t! I’m sorry you went through all that pain and difficulty. Keep sharing your story! It’s brave and powerful for us all to read. I’m hopeful that the women’s health judgement stops soon.
xo,
Brittany

erin
August 5, 2021 12:58 pm

Thank you for sharing! I had no idea what a LEEP was when I had to get one last winter. I was in the middle of trying to get pregnant, so the procedure plus the 6-month wait time till I could try again was devastating to me. And it completely changed my menstrual cycle and has caused irregular bleeding every month since. I’m still not pregnant and have finally found a doctor who will listen to me and run the necessary tests to see what is going on. There is so, so much shame and guilt surrounding women’s health, especially… Read more »

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