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The Mental Health Side of Lichen Sclerosus

The Mental Health Side of Lichen Sclerosus

Introduction

This week I make my contribution to World Mental Health Day and took a closer look at the mental health side of Lichen Sclerosus. In this episode, we discuss what research has been done on Lichen Sclerosus and mental health. Further, I highlight some stories from other LS warriors who talk to us about how Lichen Sclerosus has impacted their mental health.

Mental Health Awareness Month image.

Important Message about Lichen Sclerosus and Your Mental Health

First and foremost, when it comes to Lichen Sclerosus and mental health issues, you are not alone.

You aren’t alone in feeling isolated, anxious, confused, scared, frustrated, lower self-esteem, etc. Many of us struggle with similar feelings. In fact, I often hear women reach out to me saying they find the mental health aspect of Lichen Sclerosus to be worse than the physical.

The Research on Lichen Sclerosus and Mental Health

Study #1

Perhaps unsurprisingly, the research on Lichen Sclerosus and mental health is sparse. And when I say sparse, I mean I found a whole of two studies on this topic.

Image of research representing the two research studies on Lichen Sclerosus and Mental Health

The first is ‘Psychological and Psychiatric Morbidity in Lichen Sclerosus in a Cohort Recruited from a Genitourinary Medicine Clinic’ (2010) by Shasi et al.  This study looked at 45 cases of Lichen Sclerosus between 2000 and 2018 and sent out questionnaires; only 26 responded.

Here are some results:

  • 4/26 were worried they would give their partners LS, even though they were counselled Lichen Sclerosus is not an STI; it is not a contagious disease.
  • Over 50% experience moderate to severe anxiety.
  • More than a quarter of them reported depression, insomnia, and were stressed.
  • A few were worried about started new relationships.

In sum, they concluded LS has a profound effect on mental health. But we could have told them that, right? They also note LS patients, should be routinely referred to clinical psychologists.

Despite this conclusion, 99.9% of the people with LS I speak with never get any psychological referrals. This needs to change! Doctors need to start referring us to psychologists/counsellors every time they diagnose LS.

Study #2

The second is a review article by Pragya Ashok Nair ‘Vulvar Lichen Sclerosus et Atrophicus’ (2017). In this article, they go through everything relating to Lichen Sclerosus (e.g., pathology, treatments, etc.). Towards the end of the article, however, there is a small section dedicated to mental health and counselling. They note according to the National Vulvodynia Association, people with LS have things like anger, low self-esteem, feelings of hopelessness, isolation, depression and anxiety. They state:

“Psychological counselling is very much needed for patients with vulvar Lichen Sclerosus”.

Despite this, however, protocol for most doctors is diagnose Lichen Sclerosus, write a prescription for topical corticosteroids, and send the patient on their merry way.

Thus, we need to raise awareness and use our voices to push for counseling referrals every time someone is diagnosed with Lichen Sclerosus.

Throwback to the Early Days

At the beginning of the podcast, I did an episode called ‘Lichen Sclerosus Symptoms’ where I discuss mental health and LS; listen to it here. And this is before I really familiarized myself with the research; before I spoke with dozens of people with LS. Early on in my podcast, I still knew that mental health was a critical part of LS and one that was often overlooked in the medical communities.

Mental health issues – what I call secondary symptoms – may be even more difficult than physical ones. That is, our physical symptoms can be seen and treated. However, mental health is invisible and thus harder to treat. This is why it is important for us to build a community so we can support each other through these issues.

What Mental Health Issues do People with LS experience?

Here are some examples of what you may experience. You may:

  • Feel broken.
  • Depression and anxiety.
  • Suffer from low/loss of self-esteem.
  • Worry about the impact it will have on current and future relationships.
  • Be terrified of developing cancer.
  • You may be grieving the loss of anatomy.
  • You may feel as though your body has let you down.
  • Feelings of sadness, grief, anger, confusion, and frustration.
  • You may feel isolated and alone.

These things weigh on you and they make you exhausted. It is hard to go through these thoughts and experiences.

Words from LS Warriors on Mental Health

I will now move away from the research and instead shine the spotlight on the lived experiences of others with LS.

Lisa on Mental Health

First, Lisa, who is one of our LS warriors states: “The mental anguish is often as bad as the disease itself. And doctors will not address the mental health disease”.

And I concur; so true. Of course, there are some incredible medical professionals out there who do provide referrals for and talk to their patients about counselling options. However, at the time, these professionals are in the minority. Accordingly, we need to advocate to make this best practice for diagnosing individuals with LS. Let’s work to make this just as common as it is to write up a script for steroids.

Lou on Mental Health

Next, Lou discusses the impact of mental health when she was first diagnosed. You can listen to Lou’s diagnosis story here.

“I think even more broadly than seeing a gynecologist and dermatologist, it’s very important to think of your mental health as well. […] Because the mental health and emotional aspect are so undervalued and I’ve really struggled since diagnosis. […] I don’t feel feminine, womanly, and desirable, I feel scared and shriveled.”

Please don’t be afraid to reach out for help. Talk to your doctor, a family member, or partner and say “I’m struggling and need some help”.

Dr. Sanaz on Mental Health

In her diagnosis story, Dr. Sanaz spoke on what we can do to minimize the impact of mental health. In this episode, which you can listen to here, she states:

“As women who are speaking up about it now, I think we need to speak about it more and more to destigmatize all of the feelings, all of the mental and emotional health issues that come with LS, needs to be more normalized. The more we normalize the fact that there are a lot of serious mental health struggles that come with LS, the more and more women will start talking about it, and saying, “yes, me too! And maybe I can speak to someone to lower my levels of stress”.

Listen to Dr. Sanaz speak more on mental health here. Dr. Sanaz is a brilliant trauma-informed yoga instructor, she does 1-1 and group therapy. All of her information can be found on her website, listed below.

Support for Mental Health

Emma Norman and Clair Baumhaur

Refinery29.com published an article called “My Vulva Burned Like it was on Fire, then I got a Diagnosis that Changed my Life” by Emma Norman.

In this article, Emma noted she remembered having issues with her vulva at the age of 4. This continued into adulthood. It deeply affected her mental health; she avoided relationships because she knew she couldn’t have sex. She became deeply depressed.

Finally, she was diagnosed with LS, and eventually got the help she needed. She was finally treated and monitored for cancerous changes. Today, she is in a much better place mentally.

Image of a phone with social media apps representing the number of platforms out there where you can get support for the mental health aspects of Lichen Sclerosus.

Emma, from @lichensclerosusuk, is an incredible superhero activist who works alongside Clair Baumhaur, another superhero activist. Together they have multiple Facebook support groups, spread awareness all over social media; they are everywhere, putting in the work, day in, and day out. They are using their voices and getting the story out and their work is so important. These links can be found below so you can follow them. They have wonderful support resources.

Lichen Sclerosus Virtual Meetup

If you need support on your mental health journey, email me at Kathy@lssupport.net or DM me @lichensclerosuspodcast on Instagram.

Furthermore, sign up to join our Lichen Sclerosus Support Virtual Meetup. We meet every other Saturday from 2 pm – 4pm and/or 7pm and 9 pm EST. Click the button below to sign up and get on the list! It’s a great opportunity to share your story, connect with others, ask questions and for advice, as well as find support on your mental health journey!

You don’t need to go through this alone!

So what are you waiting for? Click this button and join us!

Resources:

Psychological and psychiatric morbidity in lichen sclerosus in a cohort recruited from a genitourinary medicine clinichttps://pubmed.ncbi.nlm.nih.gov/19917638/

Vulvar lichen sclerosus et atrophicushttps://www.jmidlifehealth.org/article.asp?issn=0976-7800;year=2017;volume=8;issue=2;spage=55;epage=62;aulast=Nair

My Vulva Burned Like It Was On Fire, Then I Got A Diagnosis That Changed My Lifehttps://www.refinery29.com/en-gb/2019/01/221855/vulva-disease-lichen-sclerosus-cancer

Dr. Sanaza’s website – https://www.alchemyoftrauma.com/

Dr. Sanaz on Instagram @dr.yaghmai

Emma Norman and Clair Baumhaur’s Accounts

Facebook – https://www.facebook.com/groups/221930761513570/

Website – https://lsvcukawareness.weebly.com/

Twitter – https://twitter.com/LSclerosus & https://twitter.com/Vulvalcanceruk

Instagram – https://www.instagram.com/lichensclerosusuk/ & https://www.instagram.com/vulvalcancerukawareness/

By Kathy

I'm 42, a wife and mother of three. I have been suffering from Lichen Sclerosus since 2013. I started this podcast to build community and learn more about this incurable condition.

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