Ladies with endometriosis, you all know the pain...that ripping, searing, knife-in-the-vag agony of a Pap smear. And no, it shouldn't hurt. A Pap smear, and a simple manual pelvic exam for that matter, shouldn't be more than uncomfortable, and perhaps, really, really awkward. Unfortunately, if you, like me, suffer from the Evil Soul Sucking Bi-otch (ie: endometriosis) or her BFF (ie: pelvic floor dysfunction), you likely have pain with any penetration, but especially when that penetration is a hard, cold metal speculum. Whether from endometriosis lesions on or near the vagina, adhesions fusing the vagina and rectum (oh yes, y'all, been there, done that!), or pelvic floor disfunction, those of us with chronic pelvic pain dread the words, "Let your knees relax to the side."
I had a few glorious months of pain free pelvic exams after my first excision surgery, and the experience nearly brought me to glorious, light-from-the-heavens tears. Since my first attempt at the age of 18, exams felt like a knife, ripping me in half. I'd been told it was because I was a virgin, that I was just "too tight," and that it was ok to start birth control to manage my period and pms symptoms without the exam. It wasn't until four years later, after I had several emergency room visits, a slew of doctors, and a handful of ovarian cysts, that I was told my pain with pelvic exams might be something to see a gynecologist about (and perhaps a psychologist, because the pain was all in my head...obviously!). No longer a virgin, I lay in a pool of sweat, determined to get my first Pap smear accomplished for the sake of my own health. The nurse looked at me, a sly, mocking smile playing on her lips, "You know a speculum is smaller than a penis, right?"
Wow...stop the presses! My pain is gone! I had no idea a speculum was smaller than a penis! I'm CURED!
No, that exam was still painful (I did get my pap though!). My first pain-free exam came much later. Years later, after my surgical diagnosis, after years of hormonal suppression had robbed me of what little health I had, after my life had been turned upside down by my disease. It came after I traveled halfway across the country to St. Louis to have surgery with a highly trained excision surgeon who gave me the chance at a better life (which I did not find in the medical Mecca of Boston).
I was normal for the first time in my pelvic-exam-receiving-years.
But hey....there's something wrong with this story! It hit me while I waited for my stir-fry bowl to come to my table, as I sat across from my fellow Endo Sister, our husbands, and her children.
I began seeing a gynecologist from the age of 18, put myself through painful attempts at exams, and failed for years...yet, I wasn't officially diagnosed with endometriosis until the age of 27, 14 years after my painful periods and bowel symptoms began. I spent years beating myself up for not being able to relax enough to have a pelvic exam, for having some kind of anxiety problem that I couldn't let a total stranger enter my body without guarding unconsciously. But you know what? IT WASN'T MY FAULT. I had a painful, debilitating disease, and damn it, someone should have known this!
Endometriosis is a common gynecological condition, one that is estimated to affect 1 in 10 women. So how come it took so damn long to get diagnosed? Why was I blamed for my pain with exams, mocked and humiliated by callous individuals who were supposed to take care of me? Why wasn't this major symptom taken seriously?
I'll tell you why: because many don't know any better. Myths run rampant about this disease, and many women with painful pelvic exams are treated as if there is something wrong in their heads, when in reality, there is likely something wrong in their pelvis. That something requires delicate surgical excision by an advanced surgeon. Why is this happening? How come this common disease is so often overlooked?
I think one reason is that we do not have annual screenings for endometriosis. Oh sure, we drag our nervous, nail-biting booties into the office to have someone insert a cold metal speculum (if they can!) and test us for cervical cancer, but no one asks us if we have painful intercourse, pain with bowel movements and urination, or if we are missing work and/or school regularly because of our period pain.
And they should!
Every time a woman comes in for an annual exam, these questions MUST be asked. In order to change the way endometriosis is diagnosed (which takes on average between 7 and 10 years after onset of symptoms) and get women the interventions and treatments that will get them back to living a normal life, WE NEED ANNUAL SCREENINGS. I'm not asking for an invasive test. I'm not even asking for a swab of the mouth or a quick blood draw. I'm asking every gynecologist to ask the important questions. Have an open discussion about pelvic pain and really listen. Keep endometriosis at the forefront during these discussions. Young women do NOT deserve to spend the prime years of their life battling this disease when it can be diagnosed and treated early.
Please, join me in asking that endometriosis screenings become part of an annual gynecological exam. Ask your gynecologist to add an endometriosis screening questionnaire to their annual routine. We have a lot of work to do to dispel the myths about endometriosis and educate people about this disease, but the least we can do is START TALKING about endometriosis, and get the process started early.
Endometriosis screening tools can be found by contacting:
Endometriosis Research Center (www.endocenter.org) - Adopt-a-Doc program
Endometriosis Foundation of America (www.endofound.org) - Screening tool for school nurses and teens
Find out more about research looking into early detection: