This personal journey is the one I am most nervous to share, but I feel it is the most important. If I can support one person who is going through similar symptoms to not feel alone, and help advocate to encourage one person to receive an earlier diagnosis, then this is all worth it. Here is my Lichen Sclerosus journey.
When I was younger and my body started changing, I noticed I would get small cuts around my vulva and perianal regions. I never thought much of it (other than “Ow!”) but figured it was just part of what was happening. If I walked too far or sat in a certain position, I would get this sharp paper cut like sting, it would itch, then slowly go away. That was that, I never brought it up.
Fast forward to grad school. It’s a week before my Thesis is due. I’m working full time, trying to manage school, work, and life. One evening my body felt like it just broke. I was in so much pain. I couldn’t breathe, I was shaking, freezing, sweating, all from the pain. I couldn’t stand, I couldn’t sit, I couldn’t move, I felt like I couldn’t possibly exist much longer. The last place I wanted to go was the hospital. After years of not being taken seriously and being belittled by medical professionals I gave up on any help or relief coming from a medical facility.
My husband convinced me to go to the hospital. The pain was coming from my perianal area. It felt like shards of glass were ripping through my skin. The doctors didn’t know what to do with me. After receiving an MRI, the doctor said I was “constipated”, but couldn’t figure out how to manage my pain. Constipated?!!?! I’m sorry, the last time I checked, constipation does not feel like getting stabbed with a serrated knife in my rectum. They admitted me over night. That one night turned into a week. Nothing they did could get my body to become unconstipated. According to the doctor, if they could relieve the constipation I would be fine.
I couldn’t understand this and I asked questions in an attempt to advocate for myself. I have been constipated many times prior to this, and this was nothing like that. The pain was directly associated with my skin. I was constipated because my body would not let me pass anything due to the excruciating pain that would then occur. Nothing, nothing could get through to this doctor. In his mind it was constipation. And that was that. No one looked at my skin.
When the doctor lost his patience and voiced his frustration, he prescribed an enema. Let me just say, this was by far the most painful experience of my life. When the nurse came in, she made my husband leave the room. She knew this was not going to help my situation, this was going to be incredibly painful. My mom was able to stay. She and the nurse did their best to comfort me. It was horrific. I screamed. I screamed a lot. It felt like they were stabbing a sharp and jagged stick all the way through an open flesh wound. Moving it around and tearing the wound open even more. The pain. The pain was excruciating.
The nurse stopped after a few minutes. She couldn’t finish the enema. She knew this was not the answer and couldn’t believe what I was going through. As I cried myself to sleep after that, I heard the nurse rip into my doctor. If by chance, that amazing nurse reads this, please know how grateful I am for you and thank you for sticking up for me.
After that, still without looking at my skin, the doctor discharged me and told me to go see a colorectal surgeon. I did just that. When I met the surgeon, I felt like this was it. She was confident, determined, and understanding. She was going to figure out what is going on, she was going to fix me. Off the bat she did a sigmoidoscopy, a minimally invasive procedure similar to a colonoscopy but only goes up to the sigmoid colon rather than the whole large bowel, and an anoscopy, which looks specifically at your anal-rectal areas. She immediately found multiple anal fissures and internal hemorrhoids. To help relieve the anal fissures, she administered botox in my rectum. This was right before my wedding, and the running joke of my bachelorette weekend was that I got botox! (Just in my butt).
This helped for a little bit, about a year. When my symptoms started up again I went back, was diagnosed with chronic anal fissures, and we decided another surgery was best. So, botox in the butt round two! This time, it did not go as well. It had no help to relieve my symptoms. I lost control of my muscles. Going into work in the office every day was a nightmare. I never thought I was going to make it to the bathroom on time. What were little paper cuts all over now morphed into not being able to control my bowel movements. I was 24 years old.
One day I was at work in the office. I was in so much pain that I doubled over and fell to the floor. While still on the floor, hiding under my desk so my coworkers couldn’t see me, I reached for my phone and called my doctor. The office refused me when I asked to leave a message for my doctor to call me back. They said she is not available to call me. I was able to speak with a nurse, but she wouldn’t listen or document any of my currently active symptoms. She actually said over the phone that there was no need to write any of this down. The way she spoke belittled and reprimanded me. I was not taking care of myself. The pain I’m in is my fault. The answer was so simple, consume more fiber and take more Sitz baths. Using everything I could to not break down and sob, I tried to calmly explain that when I eat more fiber it makes the pain worse. That did not make sense to her. I must have been lying, being lazy, and incompetent. I am embarrassed to say that this exact scenario happened many times.
I went back to see this doctor and she said the next step was a full reconstruction (Sphincteroplasty). She went over the risks, and at 24 years old, I would have a new anal sphincter and a very high chance of permanent incontinence.
During this consultation, I shared with my doctor a typed and organized list of all of my symptoms and medical history (still did not have my Endo diagnosis yet). I was convinced that everything was related, and if she just took a minute and read through them she would be able to go, “Aha! This is what’s going on, and this is how we solve it!” Instead, she took the piece of paper, crumpled it up, tossed it in the garbage can, and walked out of the room, all while not skipping a beat in her reasoning on why I should move forward with the surgery. My mom and I turned and looked at each other, each of us with our jaws dropped. We silently walked to our car, still in disbelief of the doctors dismissive actions. In my desperation, a part of me still wanted to trust her and considered moving forward with this surgery, if it meant that there was a chance for this pain to go away. I am so grateful I stuck to my gut and walked away.
At this point in my journey I tried to do everything I could to find relief. Since the start of my symptoms I have kept countless food diaries, health journals, tried various diets, exercises, and alternative medicine. I attended a local class where a nutritionist discussed how to approach and maintain a balanced life. I was so taken with her discussion that after the class I reached out and began working with her.
When working with the nutritionist, I decided to do an Elimination Diet. I cut out all of the common food allergens (gluten, dairy, fish/ shellfish, soy, eggs, nuts) for a few weeks, then would reintroduce one at a time, with a week of full elimination in between each reintroduction. This took some time, and was very difficult to maintain while also trying to go out with friends and well, live.
The results of this self inflicted science experiment were interesting. Nuts, eggs, and fish/ shellfish had no impact. Soy and gluten had an affect on me mentally, rather than physically. These foods made me more emotional and less happy than my normal baseline. Keep in mind, I am only sharing my experience and I realize that diet is only one of the many variables that change during any given week (this is not a designed experiment with perfectly controlled conditions). With that said, I personally also felt a difference when I reintroduced dairy. About a few hours after I ate my first piece of cheese in maybe a month, I felt the all too familiar sting shoot right through me. There it was, the paper cut. Soon enough, I was covered in the little cuts. This is why I’ve cut dairy out of my diet (or at least try to). I am not here to say that this will make a difference for anyone else with LS. This is just my story.
Around this time I was looking for a new gynecologist. I got a few referrals and made an appointment. This is the doctor who has changed my life. In my first appointment with her, she took one look and told me I was a textbook case for Lichen Sclerosus. (Um what?). After 15 years, this woman needed to take just a quick peek?!! Let me just reiterate here how happy I am that I did not get my butthole reconstructed.
She prescribed steroid ointments and had me on a strict regimen to slow down the disfiguration that was occurring. With this, and my new found dairy avoidance, over time my LS symptoms have become more manageable. It is still there, but I can live with this amount of pain and discomfort. When it was time for my first surgery for diagnosis of Endometriosis, my doctor also took biopsies to confirm LS.
After this I went and saw a vulvar specialist. She identified a few other diagnoses: clitoral phimosis, vaginal stenosis, spastic pelvic floor syndrome, and dyspareunia. I still have to look each of those terms up to figure out what they mean. This doctor put me on an even stricter steroid regimen and had me check in every so often to review progress. She also recommended physical therapy. This was the first time I heard of physical therapy being beneficial for anything other than your standard sports injury.
Curious about this, I started physical therapy for my pelvic floor. This was life changing too. One of the most surprising and beneficial outcomes of physical therapy was overcoming the sense that this was my fault. Having multiple diagnoses regarding my vulva, clitoris, and vagina made me feel “dirty.” Those were words that were never commonly used in a positive or normalized way. I felt ashamed of my body and the diagnosis, and I felt like I caused these issues. When someone would ask what was going on, I’d stumble with words and then rely on the familiar phrase of “stomach trouble”. Working with my physical therapist made me feel like it wasn’t my fault. It brought to light how complicated the reproductive system is, and how minimally it’s discussed. We need to normalize these conversations and vocabulary, and eliminate their stigma.
Since my diagnosis, I have been focused on managing my LS and it’s symptoms. I’m still trying to learn more about it and trying to not be embarrassed about my body. This is my everyday normal. This is part of who I am, and although illness doesn’t define anyone, it certainly has an impact on how you see yourself. Together, we can dismiss the negative stigma and work to support and encourage each other.
Thank you for sharing this very personal, and very important story. People who are suffering need to know they are not alone, there is hope, never give up. It takes courage to be the one to encourage, inspire, and empower others in their daily battles with these debilitating diseases. Diseases that take far too long to be correctly diagnosed. You are a beautiful and brave warrior in sharing your experiences.
This is so well written! Brought me back to the days when I was in your office talking to you about some of these appointments! Still can’t believe the doctor and the crumpled up paper. Unreal! It also reminded me of how far you have come and how much more in control you are of your health journey! You go girl! So proud of you! 😘 xoxo
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