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Planned Parenthood saved my vagina

Countless gynecologists failed to diagnose my rare condition – until the organization rescued me

September 27, 2015 2:00AM ET

Medical histories aren’t the easiest to read (or to write, for that matter). But I’m subjecting you to mine because Planned Parenthood, which provides women across the country with high-quality, low-cost care, is at risk of being defunded. The fact is, my vulva is in danger of fusing shut. I didn’t know this until two months ago, when Planned Parenthood diagnosed my condition after my gynecologists couldn’t, and it helped me when my health insurance wouldn’t.

I’ve had a condition with embarrassing but unremarkable symptoms for a couple of decades now: intense itching in the vulva during flare-ups and excruciating pain whenever anything is inserted. It sometimes feels OK, but when it’s bad, it’s really bad. The pain started early. When I was 13, I went to the emergency room with intense pain in the lower right abdomen. The doctor couldn’t tell whether it was an ovarian cyst or appendicitis, so he called in a couple of colleagues. The result was that I — a physically small 13-year-old — was subjected to three pelvic exams.

Most ovarian cyst ruptures aren’t dangerous, but the pain is severe. You double over and break out in a cold sweat. What I remember from that long-ago ER visit isn’t the pain from the cyst, though; it’s the indescribable agony of those pelvic exams.  

No one batted an eye at my vaginal pain at that particular moment. Given the risk of appendicitis, there were more important fish to fry. But the incident shaped my expectations. When I started going to a gynecologist, I assumed that that pain level on insertion of a speculum or other medical device was normal. My gynecologists likely assumed that I was prone to dramatics or hypochondria when I gasped and gritted my teeth and apologized as a tear or two leaked out of the corner of an eye when they inserted a tiny speculum. Some of them thought I was lying when I said I hadn’t had sex. But I couldn’t imagine having sex; tampons were barely tolerable. The thought of giving birth made me collapse in a swooning salute to my gender.

The condition lasted years. I came to call it the Thing. Doctors reassured me that everything was fine. They diagnosed yeast infections or chalked it up to allergies or changed my birth control or ordered herpes tests that kept coming back negative. Boyfriends, of course, didn’t know what to do.

So I got on with it, convinced I was defective, crazy or both. Sex, when it finally happened, felt like being impaled. My vulva felt as if it were covered in carpet burns. I pretended everything was great, but it was agony — and, given the contrast with my partner’s pleasure, lonely too. “What kind of Darwinian failure am I?” I mused, mired in the shameful solitude of an animal trying to mask its defect.

I now have Planned Parenthood to thank for the discovery that my vulva is in danger of losing its architecture.

Things got worse with stress. Right before my wedding nine years ago, the area was so horrifically angry — white bumps, ulcerations, fissures — that I ended up consulting a doctor the day before the ceremony. He suggested herpes and sent me on my way. I suspected a misdiagnosis, as usual. Still, I wondered. Had I gotten herpes since my last test? Had my fiancé cheated on me? (He hadn’t.) I got married with my nethers in agony. The marriage did not last, for many reasons, including my sexual dysfunction. Loneliness of the sexual kind only seems to expand.

Some years later, a kind family friend who happened to be an OB/GYN alerted me to the possibility that I might have vestibulitis. Female genital pain, like female sexual dysfunction, is woefully underresearched. The literature on vestibulitis was limited, but he knew of it. One test consisted of holding a wet cotton swab up to the vestibule of the vagina and touching it very gently to see if hurt. It did. The doctor did all he could. I was given dilators and topical analgesics. (Numbness before sex was the best outcome I could hope for.) It all helped a little. Sometimes sex felt almost normal — even good. But not always.

Fast-forward a decade: I was traveling, and the Thing flared up. I couldn’t walk without intense discomfort. I couldn’t sleep. Underwear was out of the question. I had recently gotten an activity tracker, and my average of 11,000 steps a day went down to 1,300. Worst of all, my health insurance didn’t cover where I was. There would be a $7,500 deductible for out-of-network visits unless it was an emergency — and female pain is seldom considered an emergency. After five days it showed no sign of improvement, so I started looking for alternatives and came up with Planned Parenthood.

I had never considered Planned Parenthood before, and I didn’t want to then. The last thing I needed en route to yet another doctor was a horde of protesters brandishing photographs of aborted fetuses and screaming at me. But I gathered my wits and called. I was seen the same day.

The facility was clean and welcoming. The receptionist gave me an estimate and checked in with me at every stage to tell me how much everything would cost. My nurse practitioner took her time. She listened to my concerns and symptoms with a level of attention I had never received before. She examined me and called in a colleague to consult on my case. They conferred, and she explained what she thought was going on: a rare condition called lichen sclerosus, in which the skin thins and starts to form white plaques, papules, ulcerations and fissures. She urged that I get a biopsy and helped me get in touch with a hospital that could perform it. I got the biopsy. Her diagnosis was correct.

I now have Planned Parenthood to thank for the discovery that my vulva is in danger of losing its architecture. If lichen sclerosus — a mutilating disease of mysterious origin — goes untreated, according to Susanna Fistarol and Peter Itin in a paper published in The American Journal of Clinical Dermatology, the “labia minora may become reabsorbed and fused and the clitoris entrapped under scar tissue. The vaginal introitus may become stenotic and narrowed.” The skin thins in some places and thickens in others; there’s a small chance of developing squamous cell carcinoma, a kind of cancer. The condition is incurable and progressive unless you aggressively manage the symptoms. At the moment, standard treatment is an ultrapotent topical steroid.

We ought, as a society, to take stock of how our Puritan habits make it easy for us to blindly accept the punitive logic of Eve’s curse.

My feelings about this news: I wish I’d known about it sooner so I could have taken steps to stop it. I’m grateful to have finally have found someone who recognized the Thing as a real condition. And I’m more appalled than ever by anti-choice activists who want to legislate medically unnecessary protocols such as transvaginal ultrasounds on women, to decide for them what goes into their body and what comes out of it.

Never mind that any such procedure would (in my particular case) be unthinkably painful — punitive, in fact. The larger issue is our habit of dismissing female pain and treating female bodies as ciphers to be penetrated according to our ideological whims.

Women’s pain is embarrassing, and women are therefore encouraged to hide it, make it invisible. It’s remarkably simple, under those circumstances, to pretend that the work Planned Parenthood does to mitigate that pain doesn’t matter or even exist. A great many anti-choicers (including the recent “investigators” whose misleadingly edited videos prompted me to share this uncomfortably personal experience) insist that they’re really on the side of the realists: All they want is to inform. If this were true — if they simply wanted everyone to appreciate the mutilations that attend reproductive events — they would surely include, alongside their photos of dismembered fetuses, a photograph of a woman’s intestines being lifted out of her during a cesarean section. A fourth-degree vaginal tear. A pregnancy-induced hemorrhagic rectal ulcer. A recto-vaginal fistula. Footage of hemorrhoids that need to be manually reinserted. A Vine of a scalpel cutting through the fat layer of a pregnant belly. And of course, photographs of at least a few of the hundreds of women who die in pregnancy or shortly after giving birth each year in the United States.

One must, after all, be informed.

Lichen sclerosus (to return to my case) is poorly understood. Its cause isn’t known. Its cure isn’t known. It seems to have something to do with autoimmune disorders, but that’s all that science can tell us. It falls into an indeterminate space between dermatology and gynecology, where neither specialty is at its best. I have seen many gynecologists in the course of my life, but not one recognized it as lichen sclerosus because my case doesn’t fit the very little we know about it. Even when I went for my biopsy, the hospital almost refused to perform it, despite Planned Parenthood’s recommendation. The clinician claimed my symptoms (flare-up, as opposed to constant itching) weren’t consistent with the condition, and the white plaques Planned Parenthood observed were, in her opinion, merely pale patches.

I was fortunate to be assigned a sharp and caring nurse practitioner at Planned Parenthood who was able to diagnose — in two hours — something several gynecologists missed for years. Planned Parenthood is one of the very few national organizations that takes women’s health as its raison d’être, and it can therefore provide excellent, targeted care that outperforms the specialists’.

Anti-choice activists do not think women need targeted care. In the frenzy to defund Planned Parenthood in Louisiana, for example, dentists and audiologists were included in the list of medical providers capable of taking over Planned Parenthood patients. No one who knows anything about medicine — or cares about women’s health — would consider that an acceptable substitution. Women need targeted medical care, and Planned Parenthood provides it. It should be funded.

Equally important: We ought, as a society, to take stock of how our Puritan habits make it easy for us to blindly accept the punitive logic of Eve’s curse. It needs to stop. We cannot normalize women’s pain as acceptable collateral damage. Women’s bodies are not a footnote. We do not owe anyone our pain. Maybe someday women’s pleasure will get as much attention as men’s. Until then, the least we can do is choose which forms of pain we are — and are not — willing to put our bodies through.

Lili Loofbourow is a writer living in Oakland, California. 

The views expressed in this article are the author's own and do not necessarily reflect Al Jazeera America's editorial policy.

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