TESTIMONY “My relationship with my genitals is very painful. With what I know now, I can see that my symptoms began when I was 14. For nearly twenty years, I was told that they were yeast infections and that I needed to practice better hygiene. At one point, I stopped seeing doctors and treated myself with over-the-counter medications. I saw gynecologists and healthcare providers once or twice a year for the five years leading up to my diagnosis, and none of them noticed my lichen sclerosus. I wonder if my anatomy might have been better preserved if a doctor had noticed it sooner; maybe I’d still have my inner labia.”
The fact is that vulvar conditions are rarely, if ever, taught in general medical training. And some, such as lichen sclerosus, fall under the purview of two specialties: dermatology, because it is a skin condition, and gynecology/urology, because it affects the genitals. Given the widespread lack of access to specialists, those affected may live for 5, 10, or 15 years in pain, without a diagnosis and without access to medications that can keep the condition under control or even bring about remission. This has terrible repercussions on physical and mental health, as well as on romantic and sexual relationships.
In 2024, I met Jaclyn Lanthier, a patient-expert behind the Lost Labia Chronicles platform. We hit it off, and decided to combine our strengths and resources to create tools to better train medical staff and support patients.
Results of our collaboration:
- A gathering of people living with the condition to provide information, resources, and create a local support network in Montreal.
- A first-of-its-kind anatomical kit on the condition, featuring five vulva casts taken from individuals with lichen sclerosus whose vulvar anatomy has been affected in different ways.
- A simplified adaptation/translation into French of the Lost Labia Chronicles book on vulvar lichen sclerosus for people living with the condition (viewed nearly 1,000 times since its release)
It’s something I’m quite proud of, because it has a tangible impact on the lives of the people affected, and that’s pretty much why I do this work…
We would have loved to present this experience and the patients’ perspectives at the upcoming conference of the International Society for Vulvovaginal Diseases, taking place this summer in Halifax. But unfortunately, disciplinary silos still exist, and our participation was denied because the conference is only for healthcare professionals…
In short, there is still work to be done to ensure that the experiences of patients and professionals coexist. I’d like to take this opportunity to commend the organization Tight Lipped in the United States, which has successfully brought patients expertise into the fields of research and medical education. This should be standard practice, but well, there’s still a long way to go…
To those living with vulvar pain, hang in there! It’s hard enough on its own, and the journey to get competent and empathetic care isn’t always easy! But in the case of vulvar lichen sclerosus, with the right care, remission is possible!
TESTIMONIAL “Being diagnosed gave me an incredible sense of validation. There was a reason beyond my control for the symptoms I was experiencing: the itching, the pain, the absence of internal labia, the dryness of the skin on my vulva…. Being able to treat them and having an effective treatment plan has changed my life. I haven’t had a flare-up in months, maybe even a year. Being able to live my life to the fullest without reabsorption or prolonged flare-ups is liberating.”
The kit containing five vulva casts from individuals with vulvar lichen sclerosus is available at positivesexed.org.
The casts are awaiting scanning to be added to the 3D genital database. If you’d like to support the initiative and help fund the next round of 3D scans, you can contribute to the fundraiser on ZEFFY. We need to raise $2,782.40—plus the cost of a rental car to get to Drummondville.
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