What does it mean that vulvodynia - once described as a medical black box - now has a 97% surgical success rate for the right patients and active clinical trials for new treatments?
Dr. Andrew Goldstein is a Clinical Professor at George Washington University, past president of ISSWSH, the author or co-author of over 170 peer-reviewed articles and eight books on female sexual pain including "When Sex Hurts" (2nd edition, 2022), and the founder of vulvodynia.com. With 27 years of specialised experience, he is among the world's leading authorities on vulvar and pelvic pain. In this episode, Dr. Goldstein maps the distance between where the field started and where it is now - from mystery to mechanism - and shares what the next few years of treatment development may bring.
From black box to treatable condition: 27 years of progress
When Dr. Goldstein began working in vulvovaginal pain, vulvodynia was considered a diagnosis of exclusion in the fullest sense: the name was given to something medicine couldn't explain and had largely stopped trying to. The cultural and institutional conditions that produced this - a combination of historical neglect of women's pain, inadequate research funding, and the absence of a specialised clinical field - are the context for understanding why the progress of the last 25 years is so significant.
The research has revealed that vulvodynia is not one condition but a cluster of overlapping conditions with identifiable biological causes: mast cell inflammation in the vestibular tissue, hormonal insufficiency at the vaginal epithelium, pelvic floor muscular dysfunction, nerve sensitisation, and combinations of these that require different treatment approaches. The work of moving from a black box to these specific, targetable mechanisms has taken decades - and is still unfinished.
"Vulvodynia is not a black box. It is not something that we can't figure out what it is. It's actually different things that overlap."
The real causes of vulvar pain: mast cells, hormones, and the birth control link
Dr. Goldstein discusses the mast cell hypothesis - the evidence that inappropriate activation of mast cells in the vestibular tissue drives inflammation, nerve growth, and sensitisation in a significant proportion of vulvodynia presentations. He explains what this mechanism looks like histologically, how it is assessed clinically, and what treatment approaches target it.
He also covers the hormonal link - specifically the well-documented association between certain combined oral contraceptive pills and the development of provoked vestibulodynia in genetically susceptible women. The mechanism involves androgen receptor sensitivity in the vestibular tissue, and the practical implication is that for women whose pain began or worsened after starting the pill, a hormonal evaluation is a priority, not an afterthought. The JAMA study proving that the majority of pelvic pain patients have been gaslit is also discussed.
Vestibulectomy: the truth about who needs it and the success rates
Few topics in the vulvodynia space attract more anxiety and misinformation than vestibulectomy - surgical removal of the vestibular tissue. Dr. Goldstein provides the clearest available account of who is and isn't a candidate (approximately 7% of vulvodynia patients), what the procedure involves, and what the outcomes actually look like for properly selected patients. The 97% success rate for appropriate candidates - one of the highest in any chronic pain condition - is a figure that most patients have never encountered because the conversation around surgery is so often distorted by fear.
He is equally clear about who shouldn't have vestibulectomy and why, and about the alternative pathways that are available and appropriate for the majority of people with vulvodynia. This section of the episode is a corrective to both over-medicalisation and to the reflexive avoidance that keeps appropriate patients from accessing an effective intervention.
"We're at a point where we're enrolling people in these trials now. It's a golden era of research into vulvodynia and pelvic pain for treatments."
New treatments on the horizon: ketotifen, resiniferatoxin, and Xeomin
Dr. Goldstein closes with the clinical trials that are currently enrolling and what they are investigating. Ketotifen, a mast cell stabiliser, is among the most promising candidates - directly targeting the mast cell activation pathway that is central to many vulvodynia presentations. Resiniferatoxin and Xeomin represent additional lines of investigation. The 2023 Vulvodynia Therapeutics Summit, which brought together the leading researchers in the field, is discussed as a marker of the field's current momentum.
For people who have not found adequate relief through existing treatments, knowing that this research is active and that clinical trials are open changes the picture. Dr. Goldstein's optimism about the next phase of treatment development is grounded in specific mechanisms and specific trials - not in general encouragement - which makes it worth taking seriously.
