Why do so many vulvodynia treatments fail, when the real problem might be that nobody diagnosed what was actually causing the pain in the first place?
Dr. Maria Uloko is a board certified urologist who trained in comprehensive sexual health and is one of only seven urologists in the world doing surgical and medical management of sexual dysfunction across all genders. She built the first vulvar sexual health urology clinic in the US, her work on clitoral anatomy has won international awards, and she recently left her professorship at UCSD to build Vulva AI, a tool designed to bring her clinical approach to other doctors and patients. In this episode, she and Mathilde go through the different types of vulvodynia one by one: what actually treats each, and who each treatment is likely to fail.
Vulvodynia diagnosis: why "pain in the vulva" isn't actually a diagnosis
Vulvodynia literally just means pain in the vulva, and the vulva has a lot of parts: the clitoris, labia majora and minora, the urethra, the vestibule, the perineum. Each of those can be a separate source of pain, so being told you have vulvodynia tells a clinician almost nothing about what to actually treat. Dr. Uloko's approach starts by localising the pain: about 90% of people with vulvodynia have it in the vestibule, the tissue at the entrance to the vagina that most people have never actually seen, which narrows things down considerably before treatment is even discussed.
She compares it to chest pain: a doctor faced with chest pain runs a workup, because the cause could be a heart attack, pneumonia, a blood clot or simple reflux, and each needs a completely different treatment. Pelvic pain rarely gets that same diagnostic rigour. Patients are often handed a prescription, told to come back in six weeks, and left to conclude that the medication is just what pelvic pain is treated with, whether or not it works.
There's one study that says that the treatment success rates is between 13 to 67 percent. That is essentially saying we're just guessing. That's not the numbers that I see in my clinic, because I know what I'm treating.
Hormonally mediated vestibulodynia: how birth control and menopause trigger chronic pelvic pain
The vestibule needs testosterone and estrogen to stay healthy, and losing either can trigger chronic inflammation, itching, burning and stinging, along with changes to the vaginal microbiome that show up as recurrent yeast infections, bacterial vaginosis or UTIs. That hormone loss can come from perimenopause, but it's just as often triggered by oral birth control, acne medications like spironolactone, or hair loss medications like finasteride, all of which interfere with how the body uses testosterone. A Q-tip test that localises tenderness to the vestibule, combined with bloodwork showing the hormonal picture, is usually enough to confirm it.
The treatment is often straightforward once the diagnosis is clear: local estradiol and testosterone compounded directly to the tissue, which can be used even if a patient wants to stay on the birth control that triggered the problem in the first place. Dr. Uloko checks hormone levels on every single patient regardless of what they report taking, because the clinical picture alone doesn't tell the full story.
It's so straightforward. It's Q-tip, pain there, hormones abnormal, diagnosis, done. That is it.
Neuroproliferative vestibulodynia: nerve pain, pudendal neuralgia and when surgery makes sense
The second major type of vestibulodynia isn't hormonal at all: it's neuroproliferative, meaning excess nerve endings in the tissue, either present from birth or acquired after a bad infection or reaction that triggered an exaggerated immune response. These are often the patients who could never use a tampon, or who developed the condition after years of normal function. It overlaps with pudendal neuralgia, where injury or compression of the pudendal nerve, from horseback riding, a straddle injury or a persistently tight pelvic floor, produces the same symptoms from a different source.
Neuromodulating medications like gabapentin, Lyrica and amitriptyline can quiet the nerve signal, and Dr. Uloko finds Lyrica tends to work best with fewer systemic side effects. When medication doesn't get someone to an acceptable quality of life, a complete vestibulectomy is the surgical option, and standardisation is a real problem here: many surgeons are only trained to do a partial vestibulectomy, which leaves patients with ongoing pain, a second surgery, and the psychological toll of having gone through a major recovery for nothing.
A complete vestibulectomy has almost a ninety-six percent success rate. I think for some people neuroproliferative feels like a death sentence, but you actually have really great options. There is a life after that.
Pelvic floor dysfunction and other treatments: why physical therapy alone often isn't enough
Almost everyone with vulvodynia develops some degree of pelvic floor dysfunction, because the body braces against pain the same way it would against being repeatedly hit: tensing in anticipation, whether that's from wearing tight pants, using the bathroom or attempting penetration. Pelvic floor physical therapy is the gold standard for treating that tension, but Dr. Uloko is clear that sending someone to PT without first diagnosing what's driving the bracing in the first place just leaves the therapist fighting a losing battle, since the muscles will keep re-tightening as long as the underlying cause goes untreated. She also warns against Kegels for anyone with pelvic pain without an assessment first, since strengthening an already-tight muscle usually makes things worse rather than better.
For pelvic floor tension that doesn't resolve with therapy alone, options include muscle relaxant suppositories, TENS therapy, acupuncture and, for the most resistant cases, Botox injections to reset the muscle. Topicals like lidocaine and compounded numbing creams have a place too, but Dr. Uloko treats them as symptom management rather than treatment: useful for taking the edge off while a systemic medication builds up in the body, not a substitute for identifying and addressing the actual cause. Her broader point throughout is that a proper workup, hormones, a tissue exam and a clear diagnosis, is what turns guesswork into a treatment plan that actually has a chance of working.
