At 25, I started having pain during sex. It arrived without warning. No injury, no infection I could point to, no explanation. What followed was years of appointments, swabs and creams, and a feeling I now recognise in almost every woman I speak to: that I was making too much of something ordinary, and that the problem was probably me.
The sentence I heard, in various forms, from more than one clinician, was this. We don’t really know why this happens. Some women just experience this kind of pain. There isn’t much we can do about it.
I believed it for a while. Then I found out how common these conditions are, and something in me snapped. How can this many of us be handed the same shrug?
Here is what I want every woman reading this to know. “We don’t know” is not the truth. It is the edge of one clinician’s knowledge, and those two things are not the same thing at all.
Vulvar pain is an umbrella, not a diagnosis
Vulvodynia, vestibulodynia and vaginismus are not single conditions with a single cause. Pain can be driven by an overactive pelvic floor. It can be hormonally mediated, often linked to combined hormonal contraception. It can be neuroproliferative, where the vestibule carries an excess of nerve endings, sometimes present from birth. It can involve inflammation and mast cell activity. It can be neuropathic, as in pudendal neuralgia. It can sit alongside a skin condition such as lichen sclerosus. Very often it is more than one of these at once, layered on a nervous system that has learned to expect pain.
These distinctions are not academic. They lead to completely different treatments. Hormonally mediated pain often responds to topical hormones. Muscle-driven pain responds to pelvic floor physical therapy, not another cream. Neuroproliferative pain may eventually need surgery. Getting the driver wrong does not just waste time. It teaches a woman that treatment does not work for her, when in fact she was given someone else’s treatment.
Do we have all the answers? Not remotely. We need far more research before anyone can promise a clean diagnostic pathway. But there is an enormous distance between “we do not yet know everything” and “we do not know anything”, and women are routinely handed the second when the first is true.
The gap is geographic as much as it is clinical
The knowledge exists. It just does not travel. Findings presented openly at international conferences can take years to reach clinics a few countries away, and terminology used routinely by specialists in one country is unfamiliar to well-regarded clinicians in another. That is not a failure of individual doctors. It is a structural problem with how knowledge moves between countries, specialisms, and the people actually living with these conditions.
What advocating for yourself actually looks like
Ask what is driving your pain, not just what it is called. Ask whether your pelvic floor has been assessed, and by whom. Ask whether hormonal contraception could be a factor. Ask for a cotton swab test that maps where the pain actually is. Ask for a referral to a pelvic health physiotherapist. If you are told nothing can be done, you are allowed to ask who else might know more.
You should not have to arrive at an appointment armed like this. But until the system catches up, vocabulary is power, and the vocabulary is available.
Why I built The World’s Tightest Community
I left a career in finance to build the resource I needed at 25, when I was convinced I was the only person in the world dealing with this. The podcast brings leading clinicians and researchers in vulvovaginal and pelvic pain into plain-language conversation, because the answers that do exist should not stay locked inside conference halls and paywalled journals.
That is why Raelene’s work here matters, and why the two of us found each other. None of us closes this gap alone. But together we can make sure the next 25-year-old with unexplained pain gets a name for it, a reason for it, and somewhere to belong while she works it out.
