Me and My Cervix: How I went from terrified to empowered… to healed.
You might say I was a late bloomer. I didn’t have “actual” sex until I was 23...I didn‘t even have oral sex. That didn’t stop me from getting Human Papilloma Virus, more commonly known as HPV . As a teenager, I didn‘t know that anything other than a bad reputation could come from having digital sex (which has nothing to do with a phone or computer but in fact, finger penetration). At 20, I got a letter from my doctor saying that my first pap smear showed squamous cells. At the time, I didn’t think much about it. I talked about it with a few friends and found out it was pretty common and it usually went away on its own. I later found out that more than 80 percent of women had abnormal paps at some point. I thought, “Eighty percent? So then, wouldn’t that be normal?” I decided this was a non-problem problem.
In the years to come, the non-problem problem persisted. I was young, and an aspiring actress, so my health insurance coverage was sporadic and my doctors changed often between HMO’s and Planned Parenthood. It never occurred to me to tell each new doctor the extent of my non-problem problem. I let the latest doctor think she’d either discovered a new problem or that it was just a reoccurrence, something “to keep our eyes on.” There was no clear pattern or medical history established, even though, since my first pap smear at age 20, I’ve never had a normal one.
At 31, I was fully insured and though I’d been in the same Beverly Hills health care system
(Cedars-Sinai) for a few years, I found myself face to face with yet another new doctor. She
asked, so I told her about the history of my abnormal pap smears over the past decade, and she
immediately referred me to a gynecologist. I made an appointment to see the first available
doctor and was in Dr. Vidaria’s office the next week where she biopsied my cervix. I cried
through the entire procedure and I wasn’t entirely sure why. It was uncomfortable but not
particularly painful and for some reason made me feel guilty, dirty and terrified. Did I have
cancer? Could I never have children? Had my sexuality and neglect for my own well-
being actually put my reproductive health -- even my life -- in danger? According to the
National Cervical Cancer Coalition (NCCC), currently in the United States, approximately
14,000 women are diagnosed with cervical cancer disease each year and more than 3,900 women
die in the USA each year from it.
I waited anxiously for 10 days for my biopsy results and never received a call. I was frustrated that I had to call the office myself, but my frustration gave way to relief when Dr. Vidaria called me back to give me great news. “Your tests came back normal. Make an appointment to check back in six months to be sure.” I felt positively joyful. I said, “That’s so great! Thank you!!” I immediately started dialing my closest friends, those I’d confided in about this yucky, scary topic, and gleefully gave the news.
During my third call, call waiting beeped in, and Dr. Vidaria was on the line. “Did I just talk to you? Oh well, we did actually find something on the second test, so you’re going to need to have a LEEP.” she informed me.
I was stunned. “What? You just called and said I was fine.”
“Right, but there was something abnormal on your second test.”
“But, I don’t understand…you just said…”
Big sigh from Dr. Vidaria, “You don’t understand.” she said sounding frustrated and annoyed. Another sigh. “Well, then you should make an appointment to come in and see me so I can explain it to you.”
Filled with fear, not to mention rage at her condescension, I yelled into the phone, “Maybe you should get your facts straight before you call your patients!”
I shared my Dr. Vidaria story with my general practitioner and was in to see my new
gynecologist, Dr. Varkey within a week. She was kind and sympathetic and biopsied my cervix
in four different places (three of which I was later told were perfectly healthy). I asked her
about getting Gardasil, the new vaccine against HPV that had just been released. She informed
me that being over the age of 26, my insurance will most likely not cover the approximate cost of
$450 for the vaccine. And, since condoms clearly don’t protect you from HPV, my best bet at
prevention for the future was having just one sexual partner for the rest of my life. Great. As if
there wasn’t enough pressure on a 31- year- old single woman with a dating disorder to “find the
one.” Now I couldn’t even test drive.
Dr. Varkey insisted that if my new biopsy results came back positive for HPV, I had to
have a LEEP (loop electrosurgical excision procedure which uses a thin, low-
voltage electrified wire loop to cut out abnormal tissue in the cervix) performed as soon as
possible. Fearful tears and snot fell down my face as I asked her if I could have kids. She said
that I could, but she would “just really watch me” and “we’ll be really careful.” She gave me a
prescription for Hydrocodone and 800mg Motrin and instructed me to take the dosages before
and after the procedure.
While I awaited my results, I spent hours on the internet researching the LEEP. The primary
word that popped up in my search results was “miscarriage,” which sent me spinning. I already
felt so irresponsible and guilty about putting my own health in danger, but imagining the
consequence of a failed pregnancy (which WAS my fault) seemed unbearable. I felt forever
punished. I cried so much during that time. One minute I was calmly unloading the
dishwasher, the next I was on my knees with spit running out of my mouth, sobbing. I
continued to feel so guilty and I was so afraid (so was my 9-year-old golden retriever, who spent
much of that time very confused, with his tail between his legs). I felt that I was, now and
forever, officially “damaged goods.”
My internet searches turned out to be more than just a catalyst for my next breakdown, however.
In fact, the hours spent at my keyboard proved to be both enlightening and empowering. I
found a study in 2006 that had shown significant success in regressing cervical lesions in
women who took Celebrex, an anti-inflammatory drug usually used to treat arthritis. Results
published in the journal Gynecologic Oncology showed that cervical abnormalities improved in
75% of patients treated with Celebrex and 31% of patients treated with placebo. A complete
disappearance of detectable cervical abnormalities was experienced by 33% of patients treated
with Celebrex and 15% of patients treated with placebo.
Further, I found studies with similar results from EGCG (the main ingredient in green tea) and
Indole-3-Carbinol, a nutrient mainly found in cabbage. I also learned about a laser ablation
therapy which uses a high energy beam of light that evaporates the abnormal tissues and has
lower failure and recurrence rates than with cryosurgery (freezing cells to remove them) or
LEEP.
I was ready to share my findings with Dr. Varkey and discuss a treatment plan I was comfortable
with that didn’t involve removing a large part of my cervix and thereby increasing my chances of
failed pregnancies.
Armed with all of my research, I was ready to learn my biopsy results. When I called Dr.
Varkey, she informed me that the severity of my pre-cancerous cervical cells had progressed
from Stage 1 (CIN 1, or cervical intraepithelial neoplasia, in doctor-speak) to Stage 2 (CIN 2).
She said that she wasn’t aware of any of the studies regarding alternative therapies I told her
about, and added that she didn’t have the time to research them herself. She insisted I go ahead
with the LEEP. I was speechless and scared.
Then I heard Dr. Varkey say, “I know, I know, why me…”
I wanted to come through the phone line, shake her and yell, “No! Not ‘why me!’ I’m not a victim; I’m trying to fix this! I‘m taking responsibility -- finally -- for my own health and trying to find a way to fix this that I‘m comfortable with!”
I was too shaken to actually say anything.
“Look,” Dr. Varkey said, “I’m just trying to save your life.”
Instead of responding, I hung up and cried. I cried so hard that I took my clothes off because I was so hot, the entire time knowing it didn’t really make sense to be this upset. I also knew it didn‘t make sense for my doctor to say something so alarming to me. I wasn’t going to die. I wasn’t facing a lifetime of pain or suffering. But was I facing a dangerous future of wheelchair or bedridden pregnancies as a result of having part of my cervix removed? Would I miscarry? More than once? How could I forgive myself then? Something just felt so incredibly wrong at that time about having the procedure done. I felt more alone and left in the dark than before. Why did my doctor seem so “quick to cut? “ Would she remove more of my cervix than actually needed “to be safe? “ Why didn’t my doctor perform other procedures such as laser ablation? Why didn’t she know more about the clinical studies and therapies I’d researched? Why was she scaring the hell out of me?
During my internet searches, I’d learned of a clinical trial in Costa, Mesa, CA, that was testing a topical gel that showed promising results in regressing cervical lesions in patients whose lesions were CIN 2 and higher. Within a week, I was in Robin Black’s office qualifying for the study. During my first visit, I remember looking at the walls in her modest office and noticing that something was missing, and then suddenly snapping out, “Are you a doctor?” She wasn’t. But she was a nurse practitioner and a specialist in colposcopy and had 17 years of experience under her belt in women’s health. Under the supervision of an MD, she was heading a double-blind, placebo-controlled study testing a topical gel containing the drug 4,4’Dihydroxybenzophenone-2,4-Dinitrophenylhydrazone. Participants had a fifty-fifty chance of receiving either the drug or placebo which was applied intravaginally once a day for five days in a row, then repeated after approximately 23 days. Participants were to receive a LEEP on the final study visit. A major benefit of the study however, was that participants who received the study drug would likely show a regression of their cervical lesions which meant that they would become smaller and less cervical tissue would need to be removed.
Six visits to Robin Black’s office came and went, and I never felt left in the dark. Robin (who I
began to refer to as my “non-doctor doctor”) photographed my cervix on two different occasions,
showing me exactly where my lesion was and how big it was. She also showed me the different
sized wands used to perform the LEEP (the loops vary in width from 5 to 25 mm). By the
fourth visit there had been no improvement in the condition of my lesion which meant I’d most
likely received the placebo. Robin, without ever downplaying my health concerns or fears,
assured me that my lesion was actually quite small and would require what she called a “baby
LEEP”, using the smallest of the wands. Along with Robin’s non-alarmist attitude, seeing
the lesion and the instruments somehow put me at ease -- it demystified the procedure, turning it
into something physically and emotionally manageable. No one was trying to “save my life.”
Robin informed me there was no need to take the prescription painkillers Dr. Varkey had
prescribed and that two ibuprofen pills the morning of the procedure would be sufficient. Robin
also suggested that Dr. Varkey wanted me to take the painkillers to ensure I was calm and
relaxed during the procedure and that Dr. Varkey likely made it sound like a “life or death”
situation to make sure I had the procedure done and not ignore the problem anymore.
My roommate and best friend, who insisted it was not a problem to take a day off from being a defense attorney at a prestigious LA law firm, took me to my LEEP appointment, which lasted about twenty minutes. I wasn’t scared anymore. I trusted Robin and I was ready to put this behind me. I listened to my iPod during the procedure, and a few songs later, it was over. Robin showed me the small pink piece of my cervix she’d removed floating in a plastic cup. No sex or tampons for a month, she told me, and then it would be like it had never happened. The part of my cervix that had been removed would completely regenerate.
I had slight cramping the day of the LEEP (alleviated by red wine and shopping). After a week, the scab fell off, causing light bleeding. That was it. No longer damaged goods.
At first, I’d prayed I’d get the study drug, but when it was obvious I had gotten the placebo, ultimately, I was glad. That meant someone else with a more severe case (CIN 3, 4, or 5) might have gotten the drug, which was so much more important. And I felt privileged to have played a small part in what might be an enormous step forward for women’s health -- something that might actually “help save someone’s life” someday. I was healthy again and proud of myself for taking an active role in my health and honoring my instincts regarding my healthcare providers and my treatment options. After all, huge fancy Beverly Hills healthcare system or “non-doctor doctor” in a small Costa Mesa office, it’s still what is best for my physical and emotional health we’re talking about. That doesn’t have a zip code.
or even swimming. DANCING! That's like asking me to be Korean. 
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