What does it take to get an accurate diagnosis when your pain doesn't fit the textbook symptoms?
Stephanie Berman spent over a decade chasing a diagnosis for chronic vulvar pain, misdiagnosed and dismissed by provider after provider before finally learning what was actually going on. She's the founder of the Aziza Project, a nonprofit that funds flights, hotels and treatment for women who can't otherwise access specialist pelvic pain care. This episode traces her decade-long path to diagnosis, what it's like navigating chronic pelvic pain as a neurodivergent patient, and the work she's now doing to make that path shorter for others.
Misdiagnosed for years: the long road to identifying vulvar pain and lichen sclerosis
Berman's symptoms started in 2011 with itching, assumed to be a yeast infection. What followed was years of chronic pelvic pain and dead ends: two failed courses of pelvic floor physical therapy, a visit to a specialist vulvar pain clinic that ended in being told to "do yoga," and eventually a suspected diagnosis of lichen sclerosis that led to a year on a biologic medication that never should have worked, because the real cause was something else entirely - atopic dermatitis, only confirmed years later by a proper vulvar biopsy.
Along the way, she ran into "step therapy," the insurance requirement to try cheaper medications first before being approved for the ones more likely to help - a process that delays accurate treatment for exactly the kind of complex vulvar pain and pelvic floor dysfunction she was living with. It was an Instagram community, not the traditional referral pathway, that eventually connected her to a specialist who could actually help.
He looked at my husband, he said, be gentle, and sent us right back out the door.
Finding the right specialist: pudendal neuralgia, pelvic floor Botox and getting an actual diagnosis
Berman found Dr. Cory Babb through Instagram, sent a direct message describing her symptoms, and had what she calls the best doctor's appointment of her life - entirely virtual. She'd already put together an eleven-year timeline of her symptoms before that first consultation. It led to an in-person diagnostic nerve block for pudendal neuralgia and pelvic floor Botox using the PASIC protocol.
The nerve block confirmed what years of providers had missed: genuine pudendal nerve involvement. She went on to have five rounds of pelvic floor Botox, paired with myofascial release and nervous system-focused pelvic floor physical therapy, work that made a lasting difference even as the Botox itself wore off after a few months each time.
I had the best three days I'd had in about a decade, thanks to that block.
Chronic pelvic pain and neurodivergence: why ADHD and autism change how pain gets communicated
Berman is neurodivergent, and she's candid about how that shapes navigating chronic pelvic pain. Describing pain accurately, advocating in the moment, and not second-guessing whether a symptom is "real enough" to mention all take extra cognitive effort - effort spent before a clinician even gets to the medical problem itself. Emerging evidence also points to higher rates of chronic pain among neurodivergent people generally.
What helped most was clear, literal communication: written instructions instead of verbal ones easily forgotten, and a pelvic floor physical therapist who used a video app with checkable tasks rather than vague verbal homework. Small changes in how care was delivered, not just what was prescribed, made her far more able to follow through.
Going into the room, it just takes extra energy. You worry about, am I gonna get gaslit again? Am I going to be believed?
The Aziza Project: funding flights, hotels and treatment for women who can't afford specialist pelvic pain care
The Aziza Project is a funding organisation Berman runs that channels donations directly to providers, hotels and travel costs so women can access specialist pelvic pain care they couldn't otherwise afford. It deliberately covers travel and accommodation before medical costs, specifically to stop people going into high-interest credit card debt just to get to an appointment - partnering with the nonprofit Angel Flight for free flights to specialists like Dr. Babb in Tulsa.
For listeners looking for their own starting point, Berman points to the Aziza Project's website for resources, alongside the International Society for the Study of Women's Sexual Health and the Menopause Society, both of which maintain provider directories. Her broader advice: find a trauma-informed provider willing to keep digging until you have an actual diagnosis, because everything else - treatment, advocacy, community - gets easier once you have a name for what you're dealing with.
