My first post about fear highlighted various fears you can experience after getting diagnosed with and processing a Lichen Sclerosus diagnosis. Some of those fears included fears about relationships and sex, fears about developing vulvar cancer, and fear of the unknown. You can read about this here. In my follow-up piece, I discussed fears relating to sex and current/future relationships and provide some practical advice (checklist-style) to help lower the volume of those fears, read that piece here. In today’s post, I tackle the fear of developing vulvar cancer and the fear of the unknown. The main theme with this post and last week’s post is the power of education and how empowering ourselves can help ease our worries and fears.
Don’t forget to read until the end for this week’s #TLLCTuesdayTip.
The fear of developing vulvar cancer typically comes into play relatively early in your Lichen Sclerosus journey. For many, it starts shortly after your doctor announces, “You have Lichen Sclerosus.”
For example, when I was finally diagnosed, my doctor told me I had Lichen Sclerosus, that it was believed to be an autoimmune disease with a genetic component, and that it increased my risk of vulvar cancer.
As soon as she uttered the word “cancer” I dissociated. My ears started buzzing and I could no longer hear her; my eyes glazed over, and my mind was running a million miles a minute in every possible direction. I barely remember leaving her office and filling my Clobestasol prescription.
For months, I was plagued with the fear of developing cancer, and worse, sometimes believed I actually had cancer. This felt like torture, and the 9-month wait-time to see a gynecologist didn’t help ease my mind or my fears.
In time, of course, the fear of having and developing vulvar cancer lessened. That is, I was slowly able to decrease the intensity of my fears by educating myself about Lichen Sclerosus.
Specifically, I needed to know what I was dealing with, so I dove deep into my Lichen Sclerosus research; what LS is, the symptoms, the cause(s) of LS, the risks, and the treatment(s). I won’t go into all those aspects of research here. Instead, I will focus on the risks associated with an LS diagnosis, specifically, the risk of developing vulvar cancer. I will begin by examining the main points from the scientific literature and then discuss its implications regarding vulvar cancer.
First, receiving a diagnosis of vulvar Lichen Sclerosus does mean you carry a 2-6% risk of developing, “malignant squamous cell neoplasia of the vulva, including invasive squamous cell carcinoma and vulvar intraepithelial neoplasia…” (Lee and Fischer, 2018).
Importantly, when my doctor told me I was at risk for vulvar cancer, she did say the risk is low. And sure, I suppose it is. Regardless, it is extremely scary to be told that on top of this awful vulvar disease, you might also be at risk of developing vulvar cancer, even if that risk is, albeit, low.
In 2015, Dr. Lee, Bradford, and Fischer published the results of their study of 507 people with biopsy-confirmed vulvar Lichen Sclerosus who they examined over the course of 6 years.
-357 people who were compliant with steroid therapy = 70.4%
-150 people were not compliant or partially compliant = 29.6%
-of the 357 people who were compliant with steroid therapy, 0 developed vulvar cancer (0% of the 357 people).
-of the 150 people who were not compliant with steroid therapy, 7 developed vulvar cancer (4.7% of the 150 people).
the 357 people who were compliant with steroid therapy (regularly used their steroids as prescribed by their specialist/doctor) did not develop vulvar cancer. 7 people who were not compliant with steroid therapy (didn’t use steroids consistently or at all) developed vulvar cancer. (Lee, Bradford, and Fischer).
This suggests the proper use of steroids (click here to learn more about proper steroid use from Dr. Jill Krapf here) may help in the prevention of vulvar cancer for LS warriors.
I stated above the current scientific literature suggests proper and consistent use of your steroids may lower the 2-6% risk of vulvar cancer. Of course, this is not guaranteed, but for me, knowing I am compliant with my steroid therapy made me feel much better and eased my fears and anxieties.
Keep in mind there are other important pieces to the education puzzle when it comes to helping to reduce the fear of developing cancer, such as, ensuring you go to your follow-up appointments with your specialist and knowing what visible signs of vulvar cancer look like.
These next two sections are critical, especially if you do not use steroids, either because your body cannot tolerate them or for personal reasons. I understand not everyone can tolerate steroid use, and I respect that, for some of you LS warriors, steroid use is a personal choice and it might not align with your values. If you fall into either of these categories, be sure to read the following two sections.
I cannot stress how important follow-ups with your specialist are. How often you follow up depends on you and your health care provider, but once you are in remission you will typically see your specialist once a year. This is important because your doctor will examine your vulva and check for potential malignancies.
Specialists know what to look for when examining your vulva and they have specialized equipment to ensure there are no suspected malignancies. If they do see signs of vulvar cancer/malignancies, they will do a biopsy. As someone with Lichen Sclerosus, regardless of whether you are worried about vulvar cancer or not, it is so important to have a set of trained eyes examine your vulva to ensure everything is okay.
Early detection and diagnosis are crucial for every health condition, and vulvar cancer is no exception, which is why it’s important to know what signs to look for.
Ideally, you perform a vulva check once a month (here is a link to a podcast on vulva checks if you want to know more).
With respect to vulvar cancer, these are the following signs to look out for:
(Lee and Fisher, 2018).
The key aspects are: know what to look for and know your normal. When you check your vulva once a month, check for all of these signs. If you notice any, call your specialist ASAP and inform them about what you found and your current symptoms. Furthermore, and I cannot stress this enough, know your normal. That is, know what is normal for your vulva. Vulvas come in all shapes, sizes, and colors, so it’s crucial to know what your baseline is so you can identify any significant changes to address with your doctor.
A big part of my anxiety and fear at the beginning of my LS journey were fears about the unknown. I had recently been diagnosed with a disease I had never heard of, and my Google searches didn’t initially provide me with much information other than “use your steroids” and here is what a vulva with Lichen Sclerosus can look like.
It is easier to manage your fears when you know what you are scared of. It’s harder to deal with generalized fear, a fear that says, “I have no idea what my future looks like and what this entails for me.” A fear of the unknown is much harder to work with but it’s not impossible.
Don’t forget, knowledge is power. The more information you are provided with, the more informed you become. And the more informed you become, the smaller that large, expansive fear of the unknown becomes.
I encourage you to do your research and learn about Lichen Sclerosus, the risks, and what you can do to minimize them. Education was a key part of my feeling empowered and helped reduce many of the paralyzing fears I initially had after my LS diagnosis.
Of course, while I hope some of the education and information I provided here helps reduce or calm your fears, they probably won’t go away overnight. It takes time to process your emotions, work through those strong, sometimes scary feelings, and internalize and accept all of the information out there. Be gentle with yourself; this is really hard and you’re doing so well.
In sum, education is empowering. Knowing about Lichen Sclerosus, the risks, and what you can do to mitigate and reduce those risks can help control your fear and keep it from consuming you. While the fear of developing cancer is valid and very real, there are preventative steps you can take, such as steroid compliance, going to your regular follow-ups, and performing vulva checks/knowing what to look out for.
#TLLCTuesdayTip: Remember, fear is normal; LS is a very scary disease and the fear of cancer is valid and heavy. there are things you can do to help quiet those fears, such as educating yourself on the risks of vulvar cancer and what to look out for. So, listen to a podcast, read a research article, follow @jillkrapfmd on Instagram who provides tons of super informative posts about Lichen Sclerosus, etc. You got this!
The Grief Project is a collection of voices from people across the world with Lichen Sclerosus, sharing their experiences and journey with grief after their LS diagnosis. The purpose of this project is threefold. First, the goal is to create a space for other LS Warriors to safely and bravely share their experience with grief. Second, my hope is writing about grief and LS will be therapeutic, cathartic, and provide you with some important insights about yourself. Third, the purpose of The Grief Project is to normalize these types of discussions about Lichen Sclerosus and mental health.
You can contribute in a number of ways such as:
A) Writing your own piece and choosing your own images.
B) Writing your own piece but have me choose the images.
C) Doing a virtual interview with me and I would write out the interview and you choose pictures you’d like.
D) Doing a virtual interview with me and I would write out the interview and I’d choose the pictures.
If you would like to contribute, please reach out to me via one of the options below.
Whether you want to contribute to The Grief Project or you want to chat with me personally, you can contact me in the following ways:
Instagram: @thelostlabiachronicles
Facebook: @TheLostLabiaChronicles
Email: lostlabia@lichensclerosuspodcast.com
Do you want more support in your journey with Lichen Sclerosus? Consider joining our Lichen Sclerosus Support Virtual Meetups. We meet bi-weekly, every other Saturday from 2-4 and 7-9 pm EST. These meetups are a safe space for you to share your story, cry, celebrate, vent, ask questions, and be a part of a community of support. Click the button below to sign up!
Lee, A. and G. Fischer (2018). “Diagnosis and Treatment of Vulvar Lichen Sclerosus: An Update for Dermatologists”. American Journal of Clinical Dermatology. DOI/10.1007/s40257-018-0364-7 https://pubmed.ncbi.nlm.nih.gov/29987650/
Lee A, Bradford J, Fischer G. “Long-term Management of Adult Vulvar Lichen Sclerosus: A Prospective Cohort Study of 507 Women”. JAMA Dermatol. 2015 Oct;151(10):1061-7. DOI: 10.1001/jamadermatol.2015.0643. PMID: 26070005. https://pubmed.ncbi.nlm.nih.gov/26070005/
Bleeker MC, Visser PJ, Overbeek LI, van Beurden M, Berkhof J. Lichen Sclerosus: Incidence and Risk of Vulvar Squamous Cell Carcinoma. Cancer Epidemiol Biomarkers Prev. 2016 Aug;25(8):1224-30. DOI: 10.1158/1055-9965.EPI-16-0019. Epub 2016 Jun 2. PMID: 27257093. https://pubmed.ncbi.nlm.nih.gov/27257093/
Micheletti L, Preti M, Radici G, Boveri S, Di Pumpo O, Privitera SS, Ghiringhello B, Benedetto C. Vulvar Lichen Sclerosus and Neoplastic Transformation: A Retrospective Study of 976 Cases. J Low Genit Tract Dis. 2016 Apr;20(2):180-3. DOI: 10.1097/LGT.0000000000000186. PMID: 26882123. https://pubmed.ncbi.nlm.nih.gov/26882123/
Dell EA, Miest RYN, Lohse CM, Torgerson RR. Vulvar neoplasms in 275 women with genital lichen sclerosus and impact of treatment: a retrospective chart review. J Eur Acad Dermatol Venereol. 2018 Sep;32(9):e363-e365. DOI: 10.1111/jdv.14938. Epub 2018 Mar 30. PMID: 29524285. https://pubmed.ncbi.nlm.nih.gov/29524285/
Krapf JM, Mitchell L, Holton MA, Goldstein AT. Vulvar Lichen Sclerosus: Current Perspectives. Int J Women's Health. 2020;12:11-20. Published 2020 Jan 15. doi:10.2147/IJWH.S191200 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6970240/
*The Lost Labia Chronicles does not provide medical advice or engage in the practice of medicine. The information provided by The Lost Labia Chronicles is for education and entertainment purposes only and does not under any circumstances constitute medical advice. Please consult with your healthcare provider before making any changes to your healthcare plan.
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