Introduction
Many folks with lichen sclerosus have complicated relationships with their doctors and healthcare providers. If you ever felt gaslit or dismissed by your doctor, you are not alone. Similarly, if you have trust issues with doctors, you are also not alone. In this blog post, I am writing from the heart about what I want doctors who diagnose and treat lichen sclerosus to know. It is a call to do better and show up with compassion and empathy for your patients.
Of course, there are some wonderful providers out there who have a wealth of knowledge and who treat their patients as fellow human beings with respect and dignity – thank you to those of you already doing this work.
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An LS Diagnosis Can Feel Devastating
Listen, we know LS can be manageable, and I’m sure you see hundreds of patients with LS so maybe it’s not a huge deal to you. But it is for us. And it can feel deeply dehumanizing to feel so much emotional distress, only to be told, “don’t worry, it’s not a big deal, it’s just a skin thing”. (And yes, I have heard many people tell me their doctor told them this).
Please try to remember that for many of us, this diagnosis can be devastating. It can completely knock the wind out of us and cause our mental health to deteriorate.
It’s Not Just About Us (We Worry for our Relationships Too)
In addition to concerns about symptoms and vulvar cancer risk, many of us also worry about our relationships.
For example, folks who are currently in partnered relationships worry that they may lose the person (or people) they are with due to sexual dysfunction. For folks who aren’t in partnered relationships, some feel like they can never date or have sex again. To feel like something as powerful as an intimate bond with another person/people can be ripped away from us due to LS can destroy some of us.
Folks may also now be stressed about birthing a child and if that’s even a possibility (spoiler alert, it is possible, and we will be discussing LS and pregnancy here on LSSN this year, so be sure to subscribe to our newsletters (links at the end of the post).
Further, folks who are very symptomatic may also worry about losing friendships because they cannot go out anymore because walking and commuting cause too much pain, stress, and anxiety.
The Stressful Assembly Line of Doctors We Go Through
If I’m coming to see you for vulvar itch or pain, there is a strong likelihood you are not the first doctor I’m seeing for this. I’ve probably seen several before you, all of whom completely dismissed and ridiculed me. Consequently, by the time I see you, I’ve had a lot of medical trauma in my history and my stress/anxiety levels are at an ultimate high.
I might cry or break down, and this is because with each new doctor I see, I hope they will be the one to help me. Time and time again, I’m let down by the medical system and left to my own devices. I may have serious trust issues by the time I step into your office. This is because of just how hard I had to fight to get to this point. I need you to be patient and compassionate with me and to help build my trust up, and that won’t happen overnight.
LS Affects our Mental Health Too
The itch and pain that come with LS can be awful and for some, debilitating. While it is important to focus on and treat the physical symptoms, LS also affects our mental health. For every patient you have with LS, I’d be willing to bet over 90% of them have experienced new or worsening mental health issues due to their diagnosis.
Check-in with us. Not just once, but at every follow-up visit. Ask us, “how is your mental health? What are you struggling with at the moment”? Practice active listening when we share how we are doing. Show up for us with meaningful action by referring us to various mental health support resources and/or directing us to quality support groups.
Ask Me About my Sexual Health
Same thing with sexual health. After being diagnosed with LS, my doctors never once asked me how my sexual health was. If we had a conversation about it, it’s because I had to bring it up and fight for us to actually have a discussion about it.
Just like with mental health, check in with us at each visit and ask us how our sexual health is. For example, “are you having penetrative sex, are you having non-penetrative sex, how is your desire/libido, do you have arousal issues, are you experiencing pain with sex, etc.”. Practice active listening and follow up with meaningful actions such as referring the patient to a sexual health medical doctor, running relevant tests, and/or prescribing medications.
Doctors: We Need Better Education
One of the main reasons we started Lichen Sclerosus Support Network was we saw a massive lack of education between doctors and patients. The number of people that were just told, “it’s a skin disease, just apply this steroid” is staggeringly high. This is unfortunate because this leads a lot of people to either not use their steroid or medication or not use it properly, which can delay symptom improvement and remission. Especially because LS does carry a slightly higher risk of developing into vulvar cancer, it is fundamental that patients receive proper, up-to-date, evidence-based information so they can make informed decisions about their healthcare plans.
LSSN has programs to help get the education out to the LS community and our long-term plan is to create a provider education program so that more healthcare providers can access up-to-date LS information so folks can get diagnosed earlier and get into remission quicker. Of course, building out that program requires a lot of time, effort, money, and resources, so if you are able to, consider donating to LSSN here or volunteering for LSSN here.
Advice for Current Patients
Of course, a patient-provider relationship involves more than one person. Healthcare providers are just one side of that relationship; we are the other side.
One important tool to have in your LS/chronic illness toolbox is knowing how to advocate for yourself. This is a skill and one that requires practice, but it is so important to actively work on. It is something that I am still actively working on. Check out this discussion I had with Dr. Chauhan with tips and tricks for advocating for yourself by clicking here.
Learn more about self-advocacy and LS and get a FREE PDF handout with tips and advice for being your best self-advocate at the doctor's office, click here.
Conclusion
In sum, LS can be a very hard diagnosis for many patients. There are many components to LS – physical, mental, and sexual. It is important to address all of these with patients and ensure they are receiving proper education. LSSN/TLLC are both partnering with and working with healthcare providers to change the future of LS and this may involve creating educational pieces.
If you’re a doctor and want to partner with me on content creation, please email jaclyn@lostlabia.com.
Let us know in the comment section if any of this resonates with you or what you want your doctors to know.
Here is guest post that discusses how minorities with vulvar conditions are mistreated.
Reach Out to Me
Whether you are debating booking a support call with me, have a quick question, or want to share something related to my content I can be reached via:
Email: Jaclyn@lostlabia.com
DM: @thelostlabiachronicles on Instagram, Facebook, and TikTok.
If you want to book a 1:1 LS Peer Support Call with me (or learn more about the calls) click here.
Support Resources
FREE Lichen Sclerosus Virtual Meetup hosted by myself and Kathy of Lichen Sclerosus Podcast – sign up here.
LSSN Membership – sign up here.
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.
For a more detailed list of free and paid support resources, check out my LS resources page here.
Thank you for your blog’s. On this Worldwide LS and vulvar cancer day, I have been calling, on Facebook LS groups for sister LS sufferers to write to their MP’s or government representatives asking for more consistent treatment, better support and recognition that LS can be a disability for some women. Your blog endorses this. Could I ask you to also make the call to your followers to write or email their MP’s or government representatives.
Hi, Kath. Yes! I love that you do this and what an amazing call for action. I already do this personally; happy to get them on the line. Change happens through so many different channels and I love that you are encouraging this.