By Cassidy Avery
I can find people who love getting their hair cut (mmmm… someone massaging my scalp), I can find people who love going to the dentist (nice, smooth, clean teeth), but I don’t think I can find anyone who likes going to the gynecologist for their checkup. I know I don’t. It feels so degrading. They make you get weighed (I don’t need to know how overweight I am today, thanks), make you strip and lay under little paper sheets, and then they do all sorts of not so fun things to your lady bits (so sad… my vagina is such a good person, she never did anything to them).
To me, going to the gynecologist was a necessary evil: I had to go to get a prescription for my birth control pill. But recently I’ve been given a crash course in how there is a much more important reason we go and get these tests done.
In November of last year I went to my gynecologist for my annual pap test. A couple weeks later I got called by the nurse and told my results were abnormal. My first instinct was to not worry about it; I’ve had abnormal results in the past (they can have many causes). Ordinarily, they would reschedule me for another pap in six months or a year to double check, but this time was different. The nurse delivering my results told me that the doctor wanted me to come in as soon as possible “for follow-up.”
Instead of asking the nurse what I could expect at this follow-up (people, ask doctors and nurses questions, generally they are nice and don’t mind answering)—I hopped online and promptly started to freak myself out. Was I dying? Why did the doctor want to see me right away? After a lot of research I found that they likely wanted to do a colposcopy, which means they take a closer look at the cervix basically using a magnifying glass, and that if they saw anything that looked strange they would take a small biopsy. So that sounds pretty scary and when I told my mom and my husband what was going on and they both offered to go with me. I decided that I was a tough guy instead, telling them “no, I’m sure it’s fine!” I did not need someone to hold my hand.
I went to the gynecologist again, second time in less than a month.
The nurse that took me back did state that I would be getting a colposcopy and offered me ibuprofen or Tylenol to help with any cramping that I may experience. She seemed very serious about this so I took some Motrin, went into the room, and waited. The doctor came in and discussed with me what they were seeing. The results of the Pap Test did not show HPV (Human Papillomavirus), but they were showing some highly abnormal cells. At this point they wanted to do a colposcopy to see what was going on and possibly take a biopsy.
So they did both.
The colposcopy is very similar in many ways to getting a Pap Test. You are disrobed from the waist down and covered with a paper sheet. When the doctor and nurse are ready, you scooch to the edge of the table and put your feet in stirrups. The doctor inserts a speculum to gently widen the opening of the vagina so the cervix can be observed more easily. They likely will apply a mixture to the cervix using long handled cotton swabs, which will allow any abnormality to stand out and they observe you using their special magnifying tool. If they do see abnormalities, they will probably want to do a biopsy as well. They do the biopsy at the same time as the colposcopy, which is what they decided to do in my case.
For a biopsy, the doctor will either scrape some cells off the cervix, or use a long tool with what I would describe as tiny pinching scissors on the end to pinch off a small sample. They used the second method in my case. The doctor will probably warn you that there will be a little pinch before taking any samples. They use another mixture to help stop any bleeding (they are cutting small pieces out of you. You will bleed).
The doctors mentioned that after the procedure I would continue to have spotting and discharge—I would suggest talking to your doctor about what’s normal. For me there was the yellowish stuff (which they used to highlight the abnormalities), some small brown chunks similar to coffee grounds (which is the stuff that helps you stop bleeding), and also some light spotting. I was told not to have sex or use tampons for a couple weeks while waiting on my results.
When I went in for my follow up a few weeks later, my doctor did another Pap Test. The biopsy results were inconclusive, and they wanted to make sure that the first Pap Test had not shown abnormality because of something irregular in the vagina, as opposed to on the cervix itself. The results of the second Pap Test did show HPV and still were showing the highly abnormal cells. My doctor wanted me to come back for another colposcopy.
The second colposcopy was a much more emotional experience for me. By this point, I was sick of being poked and prodded, and I cried like a baby the whole time, more out of fear than anything else. This time I wished I had agreed when my mother and husband offered to come with me—this whole process was starting to feel pretty scary and lonely.
It was very comforting that my mom came with me a couple weeks later to get my latest results and to discuss my treatment plan.
The doctor came in and sat down with us to let us know that I was showing severe dysplasia—basically some cells on my cervix were really abnormal, a level below cancerous. She said to me that I shouldn’t worry too much because the change from pre-cancerous to cancerous normally takes many years, and that we were going to remove these cells so that they wouldn’t get to that point. She said to me, “This is why we do the Pap Test.” She explained to me that rates of cervical cancer have plummeted in the U.S., but rates of abnormalities below that level have skyrocketed. This is because more and more women are getting tested as they should, and treatment can be given before the abnormalities turn into cancer.
The treatment plan for someone like me was to get a LEEP (Loop Electrosurgical Excision Procedure). Basically, they use a surgical instrument with an electrified wire at the end to shave the problematic cells off the effected part of the cervix. Then the pathology department would review the cells to ensure that they were not worse than tests were showing and also that the edges of the removed cells were normal (indicating that all the abnormal cells had indeed been removed).
From anecdotal stories I’ve heard and things I’ve read online, this procedure can be done with a local anesthetic and in the doctors office; however, my doctor performed my LEEP in the hospital and under general anesthesia. The procedure was outpatient and in my case took less than an hour.
Prior to the procedure, very few people knew what was going on with me. I only told the people that I was closest to or who had the most need to know. My understanding was that the surgery was a very minor, outpatient surgery and I did not want all of my friends and family constantly asking about what was going on. Also, I think part of me was a little ashamed at being sick at all and another part of me did not think it was anyone else’s business.
So my mother and husband both took off time from work and drove me to the hospital. Every single person that I interacted with was super friendly and helpful. They patiently explained every step of the process. I got my first intravenous drip ever, which for someone with a severe fear of needles is a milestone! They put me to sleep and I don’t remember anything until I woke up in recovery.
I was sent home with instructions to rest (no heavy lifting, no vigorous exercise, no sex). My husband lovingly harped on me any time I did anything he considered out of bounds. For example, picking up my 12-lb. cat considered totally OK by the doctors, but my husband is a worrier and, thinking it would be too much, swiftly rejoined “no lifting!” I had some light spotting and discharge, which I was told to expect after the surgery.
Two weeks later, I went back to the doctors to find out my results and to check my healing process. My doctor was able to tell me that they had indeed gotten out all the abnormal cells and that the cells themselves were no worse than originally thought. She told me that I looked like I was healing well and that I could go back to normal activities. I was so relieved that I practically danced across the parking lot to my car.
Even though everything looks good, things will still be different from here on out. For the rest of my life, I will have to be vigilant. I will have to get Pap Tests as often as my doctor tells me to (likely more often than most women). If I decide to get pregnant, I will have make sure my doctors know that I’ve had surgery on my cervix so they can monitor me more closely to stave off any complications. And if any abnormal cells come back, I will have to go through more testing and possibly more surgery.
The process has not been pleasant. All the discomfort and anxiety of a gynecology visit turned up to 11. However, I’m really glad that I went to my doctor like I was supposed to for my annual screening—I’m glad we caught this and were able to treat it. While I may not ever love going to see my gynecologist, at least in the future I will go less reluctantly and with a grateful heart.
Originally, I was considering not telling anyone about what happened to me. It’s personal, right? But I do want to pass along one piece of advice to all the ladies out there: Go to your gynecologist and make sure you’re getting all your tests when you should. Don’t put it off—it’s important. Make sure to talk to your doctor honestly about your body and your sex life. You only get one body, so take good care of it so it lasts you the long haul.
[divider] [/divider]About Cassidy
Cassidy lives just outside Washington, D.C., with her awesome husband and two crazy cats. She is currently on sabbatical and trying to figure out what she wants to be when she grows up. his means that most of the time she’s taking personality quizzes and learning to do housewifey things like how to hem cuffs on slacks. She’s a vegetarian bibliophile who likes to cook, devour shows and movies on Netflix, and play video games. In an ideal world where money was no object she would live in Oxford, England, with a bunch of cats and kids, drink hot tea, take long walks, hang out in pubs, read books, and write.
Photo by Bethan Phillips
Thank you for writing this – I also went through the colposcopy part this experience and it is hellish for so many reasons! It’s so helpful to hear others sharing their experience to help break down the stigma – for me the emotional part was way worse than the physical pain part (although – I don’t normally get crampy but that shit had in me done for the day).
I wanted to add one of the scariest parts (to me) – the SCAB! After maybe two days of coffee grounds discharge, I had a flat, two-inch long, scabby thing come out of me – I seriously thought I was having an alien baby, it was so gross and I was terrified. Then I realized it was probably just another aftereffect of my body healing from the biopsies. So if this happens to anyone else – you’re not dying and it only happens once!
Thank you for writing this- this is such an emotionally moving piece for anyone who has been through this process!
I always feel sad when I read these posts, (which are common) mainly because almost all of these experiences and procedures are easily avoided with evidence-based screening, and with some respect for informed consent, our legal right.
The fact is annual pap testing amounts to very serious over-screening which means an “abnormal” pap test is almost inevitable, annual pap testing carries the highest risk of a false positive, excess biopsy and over-treatment.
Dysplasia is not cancer and RARELY means cancer. Even CIN 3 (also, called carcinoma in situ) only becomes invasive in something like 12% of cases. (some studies go up to 20%) Although I can certainly understand why someone HPV+ and CIN 3 would choose to be treated.
BUT so many women believe ASCUS, CIN 1, 2 or 3 “would” become cancer, and that’s simply untrue. The rare cases that progress to actual cervix cancer take many years, as your doctor mentioned, but it seems she failed to mention it’s only the rare cases that progress. Many women consider themselves survivors when almost all have simply been over-treated. So this remote risk seems like a huge threat with so many women being “treated”, when it’s a rare event.
Almost all women are simply over-treated and that can mean damage to the cervix and lead to miscarriages, c-sections, cervical cerclage, high risk pregnancies, infertility, premature babies etc.
The lifetime risk of cc is 0.65%, it’s rare in the developed world and always was, and it was in natural decline before testing even began.
The pap test has helped a fairly small number (fewer than 0.45% of women) and it can only be a small number, rare is rare, but the pap test has been horribly over-used resulting in widespread harm and distress.
Just the idea of an annual visit to a gynecologist is bizarre for many women, I’m 56 and have never seen a gynecologist. The only Australian women (and UK, NZ and many other countries) only refer women to a gynecologist if they are pregnant and want an obstetrician to assist with the pregnancy or they have a gyn issue.
Also, stirrups are not used in the consult room, but are sometimes used in surgery and possibly, during some procedures.
Of course, over-screening, over-examining, over-treating and over-investigating creates a fortune for vested interests, a few billion in the States.
For all of this examining, do US women have better health outcomes? No.
1 in 3 women will have a hysterectomy by age 60, a high number, more than twice the number of countries that do not perform routine pelvic exams. The same goes for removal of healthy ovaries. Your Dr Carolyn Westhoff, gynecologist, partly blames the routine pelvic exam for these worrying statistics.
I have never had a routine breast or pelvic exam (neither are recommended) and rejected pap tests more than 30 years ago, as a low risk woman the numbers did not work for me, near zero risk of cervix cancer or a 77% lifetime risk of referral for colposcopy/biopsy/”treatment”. (The States would have the same or an even higher referral rate)
Now I understand I’m HPV- and not at risk of cervix cancer, like almost all women.
You may be interested to hear that the Finns have the best outcomes when it comes to cc, they have the lowest rates in the world and refer FAR fewer women for biopsies etc. Since the 1960s they’ve offered 7 pap tests, 5 yearly from 30 to 60, but in my opinion, for those women concerned about this rare cancer, the Dutch have the best screening program in the world. Evidence based screening which offers the best protection from cervical cancer and from the FAR greater risk of excess biopsies and over-treatment.
They’ll scrap population pap testing (their 7 pap test program is the same as the Finnish program) and offer instead 5 HPV primary tests at ages 30,35,40,50 and 60 (or women can self-test with the Delphi Screener) and only the roughly 5% who are HPV+ will be offered a 5 yearly pap test. (until they clear the virus)
This will save more lives focusing on those actually at risk (HPV+) and takes most women out of pap testing and harms way.
I’m sorry you went through an unpleasant experience, huge numbers do, but in almost all cases these women have been over-treated and the experience is easily avoided: you give women real information and an opportunity to test for HPV.
The Americans have ADDED HPV testing to pap testing, this is not in the interests of women, it generates the most over-investigation, (but great profits) the HPV test should always stand alone as the primary test. Excess is unhelpful and usually harmful.
Women need to be so careful, do their own research and make informed decisions. I’ve also, declined mammograms (when I turned 50) the Nordic Cochrane Institute, an independent medical research group, have an excellent (and rare) summary of all of the evidence on their website. Their first damning report was released over a decade ago now. About 50% of screen detected breast cancers are over-diagnosed, the fall in the death rate is mostly about better treatments, not screening (as claimed) screening leads to more mastectomies, not fewer (as claimed) and any benefit of screening is wiped out when you consider those who die from lung cancer and heart attacks after treatments. You reduce your risk of a breast cancer diagnosis by one-third if you DON’T screen. (thanks to over-diagnosis)
My younger sister endured an unnecessary cone biopsy, she did not give informed consent for the procedure and was misled and pressured into pap testing, she now knows she was over-treated. She does not have pap tests anymore, but sadly, like so many women, she now has a damaged cervix.
Hopefully, American women will be free of these unnecessary well-woman exams that simply risk your health and lives before too much longer. Vested interests will fight to protect the huge sums at stake, but I’m sure as the years go by, more women will get to the evidence, decline excess and non-evidence based screening and if they want to screen, seek out/demand evidence based screening. (HPV primary testing and self-testing)
Good luck to you in the future. I’d be careful having annual pap tests into the future, it means the risks of a false positive and excess biopsy or over-treatment are high. The benefits of a 5 yearly and annual pap test are the same, but risk rises as you screen more often. Now we know only 5% of women can benefit from pap testing, those aged 30 to 60 who are HPV+
We should always ask ourselves: is this in MY best interests?
We have only one body and life, we need to protect it from excess and non-evidence based screening.
HPV Today, Edition 24, sets out the new Dutch program
Delphi Bioscience can provide information on HPV self-testing
Dr Carolyn Westhoff has written several articles on the routine pelvic exam.
The NCI website has an excellent summary on the risks and benefits of breast screening.