So, you think you have lichen sclerosus or you've been recently diagnosed? Now you might be wondering “What kind of doctor should I see for my lichen sclerosus?” Great question! In this blog post, I review what lichen sclerosus is, what kind of doctors diagnose and treat it, and which kind of doctor you should see to follow your case.
Lichen sclerosus is a chronic, inflammatory skin disease. It most commonly affects the genitals but can sometimes affect other areas of the body. It is considered to be an autoimmune disease with a genetic component.
According to Dr. Krapf and Dr. Goldstein, there exists a protein in the basement layer of the genital skin that the body identifies as “not-self”. When the body identifies something as “not self”, it responds as if there is an intruder in the body. Accordingly, the body tries to eliminate the intruder to keep you safe. However, in doing so, it sets off an inflammatory response. This inflammation leads to changes in the skin such as skin thickening, discoloration, and changes to the appearance of the vulva.
The changes to the skin lead to symptoms such as itch and pain.
This is definitely a Coles Notes version of what lichen sclerosus is, so be sure to watch my YouTube video where I explain in detail what the research says about lichen sclerosus, how it is diagnosed, and treated.
Lichen sclerosus sits at the intersection of gynecology and dermatology because it affects the vulva and it is a skin condition.
While this makes sense, many folks then wonder, which doctor is best for lichen sclerosus. Should I see a gynecologist, a dermatologist, or a different doctor?
The short answer is you should see any doctor that specializes in or is familiar with lichen sclerosus. This means it could be a gynecologist, a dermatologist, a urogynecologist, etc. Make sure the doctor in question is board certified and make sure they are well-versed in treating lichen sclerosus and/or vulvovaginal conditions. That second point is super important. Gynecologists do not get much training on vulvar conditions in grad school, and this is why vetting your doctors first is super important. (More on vetting later).
What’s more important isn’t necessarily the kind of doctor they are, but their knowledge of and experience with treating lichen sclerosus.
I didn’t. Well, I didn’t know about them until about a year after being diagnosed with lichen sclerosus.
A vulvovaginal specialist is a doctor who works solely with conditions that affect the vulva and/or the vagina. For example, a vulvovaginal specialist can see folks for lichen sclerosus, lichen simplex chronicus, lichen planus, vulvodynia, vaginismus, vaginitis, HPV, Desquamative Inflammatory Vaginitis (DIV), and so much more.
Vulvovaginal specialists are well-equipped to treat lichen sclerosus as it is one of the diseases they are known to specialize in. If you have other vulvovaginal conditions or concerns in addition to lichen sclerosus, they can be a great option.
They are also a great doctor to see if your lichen sclerosus is severe, complex, or you aren't responding to gold standard treatments.
A primary care physician (PCP) or general physician (GP) *may* be able to diagnose you. However, they would probably need to have a special interest in vulvovaginal disease or be up to date on lichen sclerosus. Further, they can only give a clinical diagnosis; most PCPs or GPs are unable to perform a biopsy. If you want a biopsy confirmation or your doctor doesn’t seem confident in their clinical diagnosis, request to be referred to a specialist for a biopsy.
While a good PCP or GP can diagnose and treat lichen sclerosus, you still might want to get a referral to have a specialist follow your specific case. If you aren’t seeing improvements with the medication your PCP or GP gave you, or if you have a complicated case, you may want to ask for a referral to a gynecologist who specializes in LS or a vulvovaginal specialist.
My GP was actually the one to diagnose me. This was later confirmed by my gynecologist. She put me on Clobetasol and she’s actually the one who is in charge of my prescription. That said, I also see a gynecologist for follow-ups every 6 months to monitor my case.
Because vulvar lichen sclerosus affects the genitals and the skin, gynecologists and dermatologists are the most common specialists to diagnose and treat lichen sclerosus. However, there are other specialists that can diagnose and treat lichen sclerosus that may or may not be a part of your team.
For example, a urogynecologist/urologist can diagnose and treat lichen sclerosus. A urologist is a doctor that specializes in conditions involving the urinary tract. A urogynecologist specializes in urology and gynecology.
Your doctor may refer you to this kind of doctor if your lichen sclerosus affects your ability to urinate properly. For instance, some folks with vulvar lichen sclerosus have fusing (partial or complete) over the urethra, which is the tube through which we urinate. If you are having difficulty urinating or suspect urethral fusing, call your doctor and ask for a referral to a urogynecologist/urologist. Please note that difficulty with urinating can be a number of things, not just LS. If you are suffering from urinary issues, a visit to a urologist or urogynecologist may be a good idea.
This one can be hard. Many doctors are unfamiliar with lichen sclerosus or their knowledge is outdated. Luckily, Lichen Sclerosus Support Network has created an LS provider database to help! This directory contains contact information for healthcare providers across the world who treat lichen sclerosus. The doctors in the database are direct referrals from folks with lichen sclerosus. No doctor in the database has paid to be in there. Further, the database contains specialists of all kinds! For example, it has gynecologists, dermatologists, family doctors, nurses, and more!
Of course, before booking with a new doctor, you might want to call or email the office with some questions. Consider asking:
Ideally, you want to feel comfortable with their answers. A good healthcare provider will be happy to answer your question. Both gynecologists and dermatologists should be able to perform a vulvar biopsy if it is necessary for diagnosis.
I want to acknowledge that having access to a doctor isn't easy for all. Not everyone lives in a big metropolitan hub with multiple vulvar clinics to pick from. Further, not all countries have free or affordable healthcare. There are a tremendous amount of equity and accessibility barriers to healthcare across the world that make it such that some are unable to get seen.
If you do not have access to an LS specialist I recommend the following:
There are a bunch of different doctors that can diagnose and treat LS. What is most important is you find a doctor who is up to date and knowledgeable about lichen sclerosus. Additionally, you want a doctor who will listen to your needs and health-related goals. If you have urinary issues, you may want to see a urogynecologist or urologist. If you have a complex case of lichen sclerosus or have other vulvovaginal conditions, you may want to get in with a vulvovaginal specialist.
If you want to chat with me about LS specialists or lichen sclerosus, I can be reached at:
Instagram: @thelostlabiachronicles
Facebook: @TheLostLabiaChronicles
Email: lostlabiachronicles@gmail.com
If you are struggling with grief and emotions, feel free to book a 1:1 call with me. Simply click on this link to learn more about lichen sclerosus peer support calls.
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