Hey, beautiful soul. Today we have a guest post by the amazing Sabrina Sarro (they/them). Sabrina is a lead psychotherapist and clinical supervisor at Gray Matters, in New York City. They have their Master’s in social work (MSW), focusing on advanced clinical practice and intersectional social issues. Additionally, they MFA (Master's in Fine Arts) in Nonfiction and are a certified clinical trauma professional and are certified in DBT. They are also a PCOS and vulvovaginal health specialist who helps folks with chronic pelvic pain, painful sex, and other genital health conditions. Sabrina is especially passionate about creating a safe container for people of color (POC), queer, and TGNC (transgender and gender non-conforming) folks to explore their physical and mental health in order to heal. Learn more about them by clicking here.
Sabrina lives with vulvar and pelvic pain and is still searching for a diagnosis, after seeing over 20 doctors and specialists and spending thousands of dollars – something I know many of our readers can relate to. In what follows, Sabrina shares an incredibly vulnerable post on their journey trying to get a diagnosis for their vulvar pain. Further, this moving piece includes a call for change; for the medical system to own its inherent racism, ableism, classism, etc. Awareness is important, but we cannot be fully committed to awareness without making space for and uplifting these important conversations about the harm the medical system can cause.
Without further ado, here is Sabrina’s piece.
The Early Days – When the Pain Started
One morning, after sex, I rushed to the bathroom and felt glass exit my urethra. Shards of something sharp leaving my body. Confusion in my chest. Worry, a gun in the stomach. Urine flowing into the bowl—I could barely focus on retrieving a new toilet paper roll, my vagina suddenly a furnace. Brushing this off as possible irritation from the intercourse I engaged in shortly before, I chugged swallows of water and waited to feel normal again. To feel right.
Cautioning the worrier inside my head, I paused and held a finger to its lips: “We will wait this out one more day.” Moving towards Sam, his body elongated on the bed, I mumbled: “I think I have a UTI.” Concerned, he put a hand on my shoulder, and asked: “How come?” “It’s burning me when I pee,” I followed a stray hair found on my kitchen runner and analyzed its body.
How the Pain Impacted my Relationship
Peering into the fridge, I felt my body move through waves of confusion, then waves of anxiety. Could this be something worse? I grazed my bottom lip while taking out a molding cucumber. Sam reached to hug my backside from behind me, kneading his fists slowly into my back. Trying his best to signal to me that things were going to be okay. Reaching to linger on my underside, I felt the weight of his body press into my lower back. Despite his best intentions, Sam wouldn’t be the one to hold me for what was to come. He’d never be equipped. We’d wrestle through the politics of care and need in our relationships for months to come.
Is It a UTI, Yeast, or Something Else?
Since May, It’s burning me when I pee, has been the verse of my body stuck on repeat. The part in the credits. The new mantra I cannot forget. The latest image I cannot turn away from, cannot unsee. A bad dream my mind continues to replay. When we think of burning upon urination, many of us think it’s a UTI. A possible yeast infection. Irritation after sex. The occasional imbalance of the vaginal flora. The fawn and frustration of the body adjusting to make new room, to receive new bodies.
I too was once in this mind-group, thinking to myself—oh, well, it surely must be all the spermicide I have been using. Or, surely, it has been all the barrier-free sex we’ve been having. Or, surely, it’s just a thing that can sometimes happen to vaginas and it doesn’t mean something awful has suddenly been cast upon me. It doesn’t mean something terminal is happening to me.
Pain is Political
The beginning of my burning signaled to me not only a personal odyssey through the violent medical system in which predominately Black, Brown, Indigenous, queer, gender-variant peoples experience harm, but a public one.
A signaling that demands narrative, voice, and action on behalf of the public.
On behalf of Urology. On behalf of Uro-Gynecology.
A public one that demands from our bones a specific kind of hell-raising, a push to lean into our own voices such that we are not coerced into submission or told that a symptom is all in our head.
The beginning of my burning body going unanswered swelled inside an Astoria City MD, the practitioner chiding me, shaming my purposeful and intentional hypotheses, “Could this be an embedded UTI?” That’s wishful thinking and is a little far-fetched. Foolish me, only then to know that I’d soon become a connoisseur of URO-GYN groups all on my own—memorizing the locations, specialties, fees of each urologist in the tri-state area. Then the Northeast. Then the US. How in my recollections of being forced to shrink into a voiceless Black body in stirrups, I recall his name—Joel—and how he scoffed at me while my body moved direction-less across the room, my voice muffled and at the same clearer than ever—zombied and enraged. I want to say it was at this point I knew the badness was coming.
The Harm Caused by a System Built on Racism, Classism, and Ableism
I knew I’d likely be emotionally or physically decimated one way or another, and that that decimation was largely unavoidable. That my body even intuited it months prior, years before. I want to say that I was dreaming the worst was yet to come, my fingers itching to find archives of old NIH files on the bladder. On the bladder and estrogen. On the bladder and BV. On the bladder and atrophy. On the bladder and the mind. The summer that followed was filled with shrieking in the middle of the night, accompanied by laying face down in my loft bed—a cold water bottle shoved inside my vagina.
A Battle for a Diagnosis; A Battle to be Treated with Human Dignity
I gleaned over to watch the glare of my phone chirp a text, a buzz, and then quickly re-reminded myself to chug copious amounts of water. To drown in it. To pee like a racehorse after sex. To void every 2-3 hours. To not hold it in. In June, I tested negative for a UTI. I tested positive for BV. In July, I tested negative for a UTI. I tested positive for BV.
In August, I spent 1600.00 to see a top specialist in the country who told me information my body already suspected—but didn’t really take the time to help me understand what was actually happening to me.
In September, the BV morphed into something more deadly—-gram positive bacteria showing up in my vaginal swabs. Yeast. Names I had never heard of. In October, the same thing happened again, only this time, inconsistent labs. Timing that didn’t check out. Math that wasn’t matching.
In November, I rushed myself to the ER. A kidney specialist, also referred to as a nephrologist, implores to go as soon as possible. Says, “You might need IV antibiotics.” I can’t control the dry heaving in the chest, the too soon, too fresh thought of my body fraying itself at the edges—organs molding like leftover meat.
Six months later and I am no closer to an answer.
Things Need to Change
I cling to my sheets in the evening time and recall the old me. Alive and thriving, sleeping with a lover’s ejaculate inside me. I cannot shake the medical mistreatment, the arguing with the countless insurance representatives—the re-budgeting and re-financing myself just to stay alive in this body. Just to wake up and not evaporate. Chronic vulvo-vaginal disorders are mythological almost—treated as though the bodies of vulva-owners do not matter. That we are somehow subhuman—alien. That we do not deserve the medical treatment, attention, or intentionality to sustain life.
In my still ongoing search for a diagnosis, I have learned the following things:
1.) vaginal disorders and the identification of bacteria present in any vaginal disorder or vaginal experience is oftentimes considered “experimental” by insurance, thus rendering it not payable by insurance.
2.) Oftentimes, medical school doesn’t include the explanatory diagnosis, procedural processes, and formulation of what is going on with the uro-genital portion of the body. Medical school often doesn’t teach its students about the pelvic floor, pelvic floor health, about how the pelvis and the nerves running through the pelvic area affect pleasure, pain, and pressure.
3.) There is currently a dearth of Black urologists, doctors, and medical staff professionals in general. This cannot continue to exist like this, as clearly, communities of color and people of the global majority need access to quality medical services from people who LOOK like them.
4.) Insurance and the violent system of how insurance gaslights and racistly and ableist-ly chooses how coverage is determined and not determined is also something that needs to be addressed.
Reflections on Living in a Body with Chronic Vulvovaginal & Pelvic Pain
The above four points speak to the work that needs to be done in light of how so many people are suffering, including me. Every day that I wake up to go urinate, I am thrust into a trepidatious world. I cower over my toilet and imagine soothing balms covering my urethra, that I one day might recover from this premonition come to life, come to actuality. I bowl down, bowling ball between my legs, and shrug my shoulders in correspondence. I dance to the beat of some off-pan tune in my head and wonder about area codes.
I remember and sift through thoughts and feelings around God—how he has failed me. It hurts to wipe and I can’t stop thinking about it. When Sam fucks me raw, I feel a prickle travel up there and stay a while, take a deep breath and linger there a while. I do not want to think about anything else.
I wonder about toilet papers; I wonder about Mom. I wonder about Sam. I can’t stop thinking about what it now means to occupy a body in pain. I can’t stop thinking about what it means to keep navigating a body that is alerting me to pain sequence, a nerve sequence misfiring, how I do not want to feel anything else anymore—have my nerve ending synched and zapped somehow.
A Call for Action – We Need More Research on Pelvic Pain & Vulvovaginal Health
There is little research on pelvic pain. There is little research on why we need more practitioners in this field. I cannot continue to imagine stirrups in my feet, a retching from the stomach or from the mind anymore. How are we to do anything of ourselves? How are we to make an exit? How are we to live when our bodies are making it physically impossible? How do we make an egress in the pitt of what society is making of us? I want the burning to go away. I want my bladder to recognize me. I want you to recognize me again. Hear us, see us again. Us Black. Us Queer. Us Trans and Non-binary and Intersex.
I want you to hold me in the belly of my body and swim underneath. Don’t lose me in this. Stay here. A while. I will be getting my Ph.D. in Pelvic Pain Psychology so that I can help people. I want to precise and exact and reduce their pain. I want to become the canon in one day’s newfound research. I want to sing the birds home and wish that pain could stop greeting me like an old friend, dropping its bag, declaring it is here to stay. There is no citation for me to make. I am the research. I am the clinical trial. I am the body turned other, the body made ghost.
A huge thank you to Sabrina Sarro for this incredibly powerful and moving piece. Pain is political, and marginalized groups feel this hard. When we think about what lichen sclerosus and vulvovaginal awareness means, we have to think about how this affects different groups of people and how we can enact change for the better.
Sabrina's Psychology Today profile
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OMG…I feel their pain! What a powerful story. I cried…so much resignates with me, especially trying to find the medical practitioners that have an understanding of our needs.
We completely agree! Sabrina is an incredibly talented writer/story teller. I’m so grateful they shared their story with the LS community. I know it will resonate with many. Thank you for honoring their story and for your comment <3
I am actually furious that not one of my doctors ever explained anything about the vulva/vaginal problems that menopause can bring to a woman. I had never heard of vaginal atrophy, vestibulitis, LS, or any of the other horrors that affect thousands of women worldwide (even young women and children) until I was afflicted myself. Shame on the doctors who don’t warn us. Shame on the doctors that refuse to give us bio identical (safe) hormones to possibly stave off some of these issues. There is a growing belief that many of these problems are hormone related. When our hormones are not balanced correctly, all kinds of things can happen, including LS. I know plenty of young women with debilitating pain with their periods. Hormone imbalance? Why not go to the root of the problems instead of suggesting Midol? Oh, and don’t get me started on the cost of the medications that would help us!!!
Totally hear you and your frustration is valid. I never heard of anything vulvovaginal related from any health care provider until I was finally diagnosed with LS after over a decade of trying to get a diagnosis and help. I learned nothing about menopause growing up. Now, I’m trying to catch up and learn about menopause, since I’ll be there in a few years, potentially.