I am a rare disease warrior. For 19 years, I kept it a secret. I was ashamed, in chronic pain, and every bit alone.
It’s a relentless disease. It’s torture to the body. It’s absolute torment. I lived in silence masking my pain underneath my jeans. I didn’t have the courage. I didn’t have a voice in the fight.
Breaking The Silence: Lichen Sclerosus
I’m one of 200,000 living with this rare disease. I’m one woman out of hundreds of thousands whose voices are still silent, but they are brave enough each day, to put on their makeup, their jeans, high heels and fight this disease.
It’s a heartbreaking disease. It’s a thief. It robs women of beauty, intimacy, womanhood, confidence, and instead replaces it with helplessness, with pain, with misery. There are good days, bad days, and days you feel like you’ll never wake up from the nightmare. Those are the dark days and the darkest of times with this disease.
It’s a disease with no cure. It can often lead to cancer and genital fusing. It can deform or permanently change your genitals. You don’t know the name of it unless you have it. It’s called, Lichen Sclerosus or LS. It’s a rare genital skin disease. It’s a disease children and even men can get.
My skin is attacking itself in the areas of my (I have to be blunt with this) vagina, vulva and anus (or my genitals). I’m literally uncomfortable in my skin every day. My skin is paper-thin-like tissue or toilet paper in both areas.
Uncomfortable In My Skin: "It Feels Like Stinging Hornets"
It creates deep penetrating itching within the skin constantly during the day and night. It feels like I’m being stung by 10,000 hornets and 1,000 red fire ants at any given moment in multiple areas of my genitals, inside of my legs and underneath my stomach. If I can’t scratch, then my body breaks out in sweats. You wake up in the middle of the night crying and scratching in pain.
The constant itching causes the skin to tear or shred. Your skin bruises, it bleeds, it tears, it blisters. It causes itching, burning, wounds, cracking and unbearable pain. It’s excruciatingly painful to use the restroom. I can’t tell you how many times I’ve cried in restrooms. If someone has gone in with me, I wait until they leave and then cry out in pain. It feels like a constant urinary tract infection.
Silencing Women: Intimacy Stolen
This disease is devastating for women. If you can have sex, it’s highly painful. Many women can’t be intimate with their spouses or partners. The pain lasts not just for a few hours but 3 - 4 days later. It feels like you’re being scrapped inside with a dull knife. Like you’ve fallen down, hurt your knee and that burning pain remains. However, there’s still hope for women with symptom management to become intimate again but still, there are sexual difficulties.
The one place I should feel my most beautiful as a woman, I feel my ugliest. This disease changes the very color of your skin. It looks dark purple and blue as if I’ve been beaten. It also causes your skin to become wrinkled and scaly. This disease can also cause the inside of your vaginal opening to narrow. It can cause fusion of the labia, clitoral hood and urethra.
I have a severe case of the disease. I’m in a constant fight for my life every day to prevent the worsening of symptoms of LS to prevent cancer and genital fusing. I’m monitored every few months. In fact, I will have to be monitored for cancer, skin changes, and genital fusion every few months for the rest of my life. I’m at an even higher risk because vulva, uterine and skin cancers also run in my family.
This disease has taken me to the darkest places of my life. You feel alone. It’s overwhelmingly isolating. It’s all you can think about because you’re constantly in pain. It’s made even worse by the absence of a cure. It’s equally made worse when intimacy is suddenly taken away from you. It creates anxiety, depression and sexual anxiety. For women who have experienced sexual violence or abuse in the past, it magnifies the issue. You just become highly depressed. I’ve experienced all the emotions of the stages of grief with LS from denial, anger, bargaining, depression and now acceptance. It’s taken me years to get to this place. Not talking about LS, allows it to feed upon itself in a dark place within your soul.
A Warning For Women: Who Gets Lichen Sclerosus?
I’m breaking the silence. I want to save lives. There are hundreds of thousands of women in their 20s, 30s and 40s who are just sitting ducks. They have no idea that their lives could drastically change after menopause or even before then, as in my case. It will then take them years to find a doctor and with LS you don’t have a moment to spare. Early detection is key. We need doctors on the front lines who are knowledgeable about the disease. We need more specialists at the ready who are committed to saving lives, improving quality of life for their patients. We need drug makers who are willing to explore rare diseases and find cures. One cure is a closer cure for everyone battling a rare disease.
Every woman who has an autoimmune disease, or Polycystic Ovary Syndrome (PCOS), or thyroid issues, or who has any kind of hormonal imbalance or is premenopausal or in menopause should read this story. You need to be aware. If you have a constant itch in your genitals that never goes away – see a dermatologist who specializes in LS who can possibly either rule it out as a condition or get you the treatment you need. Don’t delay.
I don’t want anyone to suffer as I have suffered over these years. I have finally found my voice. I’ve become a patient advocate in the process. I now help to fight for the 30 million Americans living with rare diseases. I contact lawmakers about legislation and issues that impact the entire rare disease community, I help to spread awareness and I’m sharing my story in hopes that it will save just one life.
Purpose In The Pain: Finding Your Voice
I’ve come to realize that there must be purpose in the pain. I have to give it purpose. All those years, of daily constant torment, has to be worth something to someone. This disease can no longer be used for negative. It will only be used for good and it will raise awareness. It will save lives. I’m reclaiming my power. I won’t let it take me down any longer.
For those of you who are battling LS - I’m here with you. I stand with you. I cry with you. My heart breaks with yours. It’s okay, to be silent, if that’s what’s best for you. It’s okay to be mad, upset, angry. It’s okay to feel lost. It’s okay to feel helpless and destroyed. I hear you; I see you, I feel your pain, and you are all wearing crowns of royalty. If I could take it all away from you, I would but I can’t. You have to find your own way through this journey. You have to find your own support, your own comfort. It’s a tough journey I wish on no one, but you will come out stronger, you will come out a warrior. You will find what you're made of and you will learn to conquer and overcome. When you feel like giving up, you kick that thought to the curb and put on your high heels and look within to find your strength. You are beautiful. Every single part of you is beautiful. You wipe away those tears and you lift your head high and you go out and just get it. I don’t know how we’ve made it past one minute, a few mins., even an hour or the day and night, but we have. We’re still here. I want you to feel validated. I want you to feel heard for the first time. I want you to feel loved. I want you to find your own voice within. I want you to have a better quality of life. I want you to fight for yourself. Fight. I want you to fight and not give up. I want you to search and track down every last doctor until you find your miracle if that's what it takes. I want a cure for us. Don’t give up hope. I did and it took everything inside of me to find it again. You can find your hope, your voice and healing. Have faith in your journey. You are not the disease. You can still spread love in pain, you can still be the woman you want to be and you don't have to hide it. Use your journey to heal yourself. Become your own radiant light. Shine like the sun, light shooting stars in the dark sky. You are my own renewed hope. You are gems. You are the diamonds that sparkle in the dust. You are a new pair of expensive lipstick. Take back what has been stolen from you. Take it back. Don't let it take anymore from you. Live, laugh, love and know you have a voice and you are heard today and every day.
I want all people to know if you’re fighting a chronic illness, there is hope. You can fight through it. You can get through it. There is hope to find your own healing. Don't ever give up.
Every day is a battle with LS. I can either win it, lose it, or get lost in it. I wake up with a decision to make. I choose to put a smile on my face. I choose to fight. I choose to be a warrior. I choose to rise above pain, above tears. I choose to find my voice. I choose to spread awareness. I choose to take back my power. I choose to take back my life. I choose to find my own healing.
Living With Lichen Sclerosus: Finding Support
How to Contact Carrie Hodgin
You can share your personal story with Carrie Hodgin by emailing firstname.lastname@example.org
We are rare in our cities but across the world, we stand together. We might not be able to hug each other but we can message each other. We can talk it out on Facebook.
Facebook Support Groups
Facebook has private groups to support women with LS.
- Sharing is Caring About Lichen Sclerosus Et Al is a highly supportive Facebook group that is private.
- Lichen Sclerosus Support Group is another private Facebook group.
- Lichen Sclerosus & Lichen Planus Skin Disorder private Facebook group. This group is great for discussing both diseases and providing support.
- Lichen Sclerosus - sclerosis - UK Support Group for Women - This Facebook group sticks to proven research and does not allow borax talks which is something you should know as a newcomer.
Hospital Support Groups
You can also reach out to a local hospital to see if they offer support groups.
I'm in the process of starting up a support group at Atrium Health Wake Forest Baptist Hospital and will update you on the status.
Wake Forest Baptist Dermatology has a Women's Clinic to treat women with LS.
If you have a support group, rare disease or LS story that you want to share email email@example.com
NORD - About Lichen Sclerosus
Cedars Sinai - Who gets Lichen Sclerosus? Diagnosis and treatment
National Organization for Rare Disorders
Find out about rare diseases and also about becoming a patient advocate by visiting NORD.
Connect with GARD the Genetic and Rare Diseases Info. Center
National Suicide Prevention Lifeline - 1-800-273-8255.
Rare Disease Support
About Rare Disease Day
Video: What can we all learn from a doctor who treats rare diseases?