I wrote this essay last winter and never published it as it’s about a personal health issue and I wasn’t sure I wanted to “out” myself. But after another flabbergasting episode of Bad Women’s Health in America, I am pushing send. It’s a little dated now as I wrote this almost a year ago but nothing has changed.
The night the itching went from bad to terrible, the billboard lights shone across the bed. It was 2011. On the bedside table in the unfamiliar room, there was a bag of over-the-counter itch medications. None of those ointments would make it stop.
The itch was relentless, buried deep under my skin. When it flared, I was reduced to counting my breath; my pulse thumped with adrenaline. I stuffed my hands in my armpits; and screamed with frustration at a body that betrayed me. I created ways to move the sheets to rub and apply pressure to the area; to twist my skin or do anything for relief. And it was not just the itch but also the shooting nerve pain so intense I felt it in my heart.
And then the most mortifying thing of all: the location. It was the skin on my body that you don’t touch in public and I wanted to associate with good things. Yes, there. The original vagina monologue.
Doctors sent me a string of referrals. Was this gynecology or dermatology? They couldn’t decide among themselves. They either didn’t look at the skin or they looked so quickly that it seemed impossible they had seen anything other than to say “It looks irritated.” Another gynecologist did an unannounced punch biopsy on the sensitive flesh. He said, “We’ll get back to you.” Weeks later, the answer? Just don’t use soap, wear cotton underwear, that should clear it up. It didn’t, of course.
Diagnosis
The diagnosis in 2016, after a merry-go-round for five years, was Lichen Sclerosus, a chronic auto-immune skin condition mostly found in women; it’s almost always on the tender, delicate skin of the vulva that veers from an intense itch to micro-tears in thinned, whitish skin which can make everything from urinating to sitting cry-worthy when flaring. Over time, if not treated, it will cause skin to fuse and make sex very painful. A Google image search is a brutal reality check. The diagnosis feels like a complicated, terrifying life sentence both for what can happen to the structure of vulvar skin if it advances and for the lifestyle changes one must make to keep it at bay. It’s associated with an increased risk of vulvar skin cancer depression and anxiety. And yet practically no doctors know about it.
The best you can do is catch it early and manage it, hopefully into a state of remission. If you can even find a doctor who knows anything. I was extremely lucky to find Dr. Jen Gunter in San Francisco’s Kaiser system. My current doctor in Santa Fe at Presbyterian is light years ahead of every other doctor I have seen.
Yet, this essay is not going to be about the various treatments for LS to live and love more comfortably.1 (You can. Ask me.) This essay is about the shambles of women's health — hardly a new story but one worth pushing on harder than ever in 2023.
Owner’s manual not included
Owning a vagina is like owning a Tamagotchi, a pet that belongs to you forever and needs daily care. It’s finicky and independent-minded. And no two are alike. Except it’s you, not a digital creature. And the only owner’s manual is one of hard-won discovery through research, trial-and-error, acupuncturists, naturopaths, the occasional MD, and, most importantly, other women. My story is just a small example of how the Western medical system fails women — and how women will persevere on their own.
Even as the male bias, the racial bias, and the socio-economic bias in medicine are increasingly exposed through reporting and data findings, we are still woefully behind and even now retrogressing.
Finding a primary care doctor (PCP) is impossible. Telemedicine has now often replaced the annual pelvic exam since the pandemic. Safe abortion continues to be viewed as a moral issue, not a healthcare issue. More women die of childbirth in the United States than in any other high-income country. Healthcare believes that outside of reproductive functions, the vulva and vagina are not really worthy of study. The penis is though. In 1998, Viagra debuted. In No Year, have women had their equivalent.
To wit, yesterday I asked my doctor to prescribe topical estrogen (Estrace) in order to relieve some symptoms. She said, “I can prescribe it to you, but insurance typically won’t pay for it for women who are not menopausal and it can be $700.” For fuck’s sake.
I used to believe that good journalism could turn the tide and maybe it is in some corners. Here’s a sampling of recent coverage of women’s health in 2022 :
Half the World Has a Clitoris. Why Don’t Doctors Study It? (New York Times)
From heart disease to IUDs: How Doctors Dismiss Women’s Pain (Washington Post)
Why America’s Black Mothers and Babies Are in a Life or Death Crisis (New York Times)
The Doctor Doesn’t Listen to Her. But the Media is Starting To. (The Atlantic)
Taking the Shame Part Out of Female Anatomy (New York Times)
But even in the face of overwhelming medical evidence, reporting, and data, it feels as if there is no systemic momentum to right the wrongs of women’s health in the US medical system.
Here’s why I am hopeful
While I was dismayed that, in December, the New York Times covered the boom in peri/menopause wellness as a Style section issue, the author quite rightly nailed the fact that we ladies in our 40s and above are benefitting from a “generational trickle-up” from our Gen Z sisters who, dressed in their high-waist jeans and cropped tees, are like “I bleed, motherfuckers!”
You’re damn right we do.
One of the few upsides to social media is that women’s health is getting normalized to a degree we have never seen. Count me among the many who follow both a hip urologist and a gynecologist on the ‘Gram. Podcasts, too, have brought real advice (and hokum) to the forefront.
Indeed, this essay has been rolling around inside me for years, but a sense of embarrassment always seemed to stop me from writing it. This point bears a second look. Why should talking about a part of the body that’s as clinical and important as a foot create shame? Like so many parts of the female experience, silence is the part that can damage the most.
So my parting shot at 2023 is just this: Women’s health is health. Take it to the polls, take it to your doctor, find insurance that covers acupuncture, and research but be very wary of disinformation. Advocate relentlessly for yourself. When you tire of that, know I’m advocating for you.
Find a voice for your own body’s story.
In brief, my experience is that regular Clobetasol steroid ointment is mandatory — do not forget to do this — and natural anti-fungal remedies including emu oil, boric acid suppositories, ADP tablets (oregano oil), and lots of natural protective moisturizers (e.g. coconut oil, cocoa butter) work to keep pH level and moisture in the right balance. There’s more: take antihistamines when necessary to reduce itch response. Also, balance hormones with acupuncture and Chinese herbs. I’d add that when I am eating an anti-inflammatory diet, the condition also improves. (Of course.) I also found that nuts, especially almonds, seem to trigger LS.
Thank you for clarity and courage for all of us who know this condition all too well.
So much YES. And all the hugs to you for dealing with this for all these years in the face of Western medicine 💔 we women need to share our stories, thank you for sharing yours with vulnerability, it’s truly inspiring ✨