Dr. Krapf’s Cutting-Edge and Groundbreaking Research
I am so thrilled to start this season with Dr. Jill Krapf who is spearheading some amazing research on Lichen Sclerosus and women of reproductive age. She will be sharing some of this research with us as well as providing us with critical information regarding steroids and how to optimally use your steroid treatment. You'll soon find out how both topics are really similar! Stick around, you won't want to miss this!
Historically, in textbooks and in scientific literature, Lichen Sclerosus is typically diagnosed between two distinct age groups: pre-pubescent girls, and post-menopausal women. There is a bi-modal distribution wherein we have Lichen Sclerosus present in the early phase of life and the later phase of life, but it is seemingly non-existent in the middle. The middle phase would consists of women between the ages of 18-50, and they are omitted from the scientific literature.
The Problem With Lack of Representation in Scientific Literature
However, Dr. Krapf notes, we know that women in this age bracket can be symptomatic and do, in fact have Lichen Sclerosus. Unfortunately, these women often spend years before getting a diagnosis because medical professionals are taught this age group cannot have Lichen Sclerosus.
Dr. Krapf’s research team focuses on women of reproductive age with Lichen Sclerosus and addresses on questions like, “what are their main symptoms”, “what is their experience”, “what happens during pregnancy and post-partum”. This research is critical because health care providers get their information from textbooks. And if there is no representation of Lichen Sclerosus for women of reproductive age in the scientific literature, then many women will continue to go undiagnosed and untreated.
*Read/listen to some diagnosis stories from fellow Lichen Sclerosus warriors who all when un-diagnosed for years here https://lssupport.netlichen-sclerosus-diagnosis-stories-you-are-not-alone/
Insights from The Research So Far
One interesting finding emerging from Dr. Krapf’s research is women of reproductive age seem to present with different symptoms than pre-pubescent girls and post-menopausal women. While itching is often the primary symptom for post-menopausal women with Lichen Sclerosus, tearing and pain during sex tends to be the primary symptom of Lichen Sclerosus for women of reproductive age.
Critically, this isn’t documented in the scientific literature, which is why this research is all the more ground-breaking and significant. If we start documenting this data, then maybe we can get women diagnosed sooner, thereby preventing scarring and loss of anatomy.
*If you are a woman between the ages of 18-50, consider filling in Dr. Krapf’s survey go to lssupport.net/survey. Make your voice heard and let’s raise awareness for this disease!
Myths about Steroids: The Science Behind How Steroids Work
Early research on Lichen Sclerosus described it as a thinning skin condition. However, this has been shown to be false. In reality, the skin is too thick. Women experience tearing because the skin loses elasticity, there is no give to it, and therefore when women engage in penetrative sex where tissues are stretched, they often experience pain and/or tearing.
Importantly, one of the most widely believed myths about Lichen Sclerosus and steroids, according to Dr. Krampf, is the idea that steroid use thins the skin. Dispelling this myth is critical because Lichen Sclerosus is an inflammatory skin disease and steroids reduce inflammation. By decreasing inflammation in the tissue with steroids, it can once again begin to function like healthy tissue by regaining elasticity. This helps to reduce tearing.
What Can You Expect from Steroids? – An Expert Weighs In
According to Dr. Krapf, the answer to this question depends on the severity of the Lichen Sclerosus, as well as the results from the patient's clinical examination.
Generally speaking, however, it can take about 3 + months to experience some relief.
Steroids, when used optimally, can help prevent future scarring, anatomical changes, pre-cancer, cancer, and help manage symptoms.
Unfortunately, many women go misdiagnosed for years, and often it takes fusing/anatomical changes for a diagnosis to be made. This means many women are already fused before beginning steroid therapy.
Can Surgery Help with Lichen Sclerosus?
Let’s address the fusing issue for a moment. I know many of you out there are concerned and preoccupied about this.
Many of us with Lichen Sclerosus experience anatomical changes such as shrinking of the labia, fusing of the labia, and/or fusing of the clitoral hood to the clitoris.
Sometimes a minor procedure can be performed to remove a layer around the tear to allow the skin to heal.
Clitoral Fusing and Surgery
For example, let’s consider the clitoris and the clitoral hood. When the clitoral hood fuses to the clitoris, a dorsal slit procedure can be performed where the doctor restores the anatomy by releasing the fused tissue. Recovery times for this procedure vary, but many women Dr. Krapf sees feel better between 4-6 weeks, sometimes sooner.
Keratin Pearls and Surgery
Another example is Keratin Pearls. Our bodies are covered in dead skin cells and our vulvas are no exception. Dead skin cells in the vulva can form into a hard ball, which can get trapped under the hood of the clitoris. Think of it as a grain of sand being trapped in your eye. These are known as Keratin Pearls and they make the clitoris extremely sensitive and cause extreme pain. More often than not, keratin pearls can be removed by a simple procedure performed in-office.
How to Optimally Use Your Steroids: 4 Must Follow Expert Tips
Many of us, myself included were not using our steroids optimally. This is often because doctors don’t have the correct knowledge to give us. Accordingly, we use our steroids with little guidance on how they should be applied.
Luckily, we have one of the leading experts and Lichen Sclerosus researchers to lay out the protocol for optimal steroid use. Our goal with steroid use is to go into remission. Remission, as defined by Dr. Krapf is, “…when the skin no longer appears thickened; the texture has resolved”.
The following are four critical steps to optimally use your steroid use and go into remission.
- Soak 15-20 minutes in the bathtub before applying the steroids. This softens the skin and enables the steroid to penetrate deep into the bottom layer of the skin, targeting inflammation. After your bath, pat dry and apply your steroids.
- Use a steroid ointment. Ointments are superior to creams in that they are thicker and penetrate deeper into the inflamed tissue. Furthermore, many creams contain alcohol. For those with tears or fissures, this can cause additional burning, which can deter many from continual steroid use. (If this sounds familiar and you are currently using a cream, speak to your doctor and request the ointment version of your steroid).
- Rub the ointment in for 60-90 seconds. Even if you soak until your skin is soft, quickly applying a layer over the skin is not sufficient. You need to really rub it in for it to penetrate down into the layer of inflamed tissue.
- Only use a pea-sized amount – no more, no less, and ensure that you are properly following steps 1-3.
Ain’t Nobody Got Time for That!
While this is the most advantageous way to use your steroid, this is unrealistic for some people's lifestyles. Not everyone has a bathtub to soak in, nor does everyone have 15-20 minutes to soak.
My advice is to follow steps 1-4 to the best of your ability but modify in ways that are practical for your lifestyle. For example, if you don’t have a bathtub, take a warm shower for 20 minutes before applying your steroid ointment. Similarly, if you don’t have the full 20 minutes – because you work full-time and have a bunch of kids running around the house – try 10 minutes.
Find what works for you and make it a routine. If you make it a chore, you’re more likely to go off course.
Optimal Steroid Schedule – How Often Should I Use My Steroids?
Again, an optimal steroid schedule depends on the severity of the case and the presentation upon clinical examination.
Generally, many women begin using the ointment once per day. Because of its strength twice a day is too strong and can cause side effects such as yeast infections and irritation. The cream, on the other hand, can be applied twice a day.
Your goal is to establish a maintenance schedule of using the steroid ointment two times a week, with approximately 2-3 days in between each application. Example steroid use schedules are Monday and Thursday, or Wednesday and Sunday.
The period between the initial treatment and your maintenance treatment varies for everyone and should be discussed with your health care provider. But a general guideline is to use the steroid every other day for a certain amount of time.
A Caveat!
It is worth noting that there are different guidelines out there. Some doctors will advise patients to stop steroid use once they are in remission. However, Dr. Krapf disagrees with the cessation of steroid use as a maintenance schedule proves to be beneficial for remaining in remission.
She discussed a paper by Lee et al. (2015) who compared a cohort of women with Lichen Sclerosus treated optimally with steroids versus a cohort who treated sub-optimally/discontinued steroid use. Their findings showed 4-5% of the latter group developed cancer, whereas none of the women who consistently used steroids developed cancer.
“There was a significant difference in symptom control, scarring, and occurrence of vulvar carcinoma between compliant and partially compliant patients” (Lee, et al, 2015).
This, in addition to other review articles and research, is the basis for Dr. Krapf’s advice to continue maintenance steroid use despite being in remission.
Additional Tips and Tricks to Keep You on Track
Conclusion
In sum, steroid use and women of reproductive age are similar in that both are underrepresented by the medical community. Scientific literature has largely omitted women of reproductive age from research on Lichen Sclerosus. Similarly, doctors are not providing patients with instructions on how to best use their steroids. Luckily, thanks to Dr. Krapf and her innovative research on Lichen Sclerosus, this is starting to change.
The key takeaway from this amazing discussion with Dr. Krapf is to use your steroids to decrease inflammation and prevent further scarring, fissures, anatomical changes as well as pre-cancer and vulvar cancer. Bookmark this page and come back to the ‘How to Optimally Use Your Steroids’ section for future reference.
I always say knowledge is power! Let’s take back our lives!
Dr. Krapf's Information
You can reach Dr. Krapf through the Center for Vulvovaginal Disorders at http://www.cvvd.org or through her Instagram at @jillkrapfmd.
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Thank you so much for joining me for Season 2! I hope you stick around because we have some amazing topics and medical practitioners joining us this season.
Did you learn something new about steroids today? Are you excited about new research coming out? Let me know! DM me on IG @lichensclerosuspodcast, FB @lichenscleorussupportnetwork, or email Kathy@lssupport.net.
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Resources:
‘Survey of the presentation, Diagnosis and management of lichen Sclerosus in reproductive aged women’ – https://cri-datacap.org/surveys/?s=KKF98KY4WY
The Center for Vulvovaginal Disorders, www.cvvd.org
Lee, A. et al. ‘Long-term management of adult vulvar lichen sclerosus: a prospective cohort study of 507 women’ (2015), https://pubmed.ncbi.nlm.nih.gov/26070005/
