Gut on Fire: Chapter 2
A true story about my stomach, my life, and my autoimmune disease
Chapter 2: Vaginal Woes and Uterus Pain
So this is my story. You might think it’s just about a stomach. It’s also a story about growing up, finding love, dealing with loss and heartache, suffering, joy, and a struggle to find my place in the world. It’s a story about being human. It’s about my journey. My stomach was, is, and might always be a little bit broken, but it’s not just my stomach. Dysfunction started there but doesn’t end there. My ovaries are broken too. My thyroid is under attack from my overactive immune system and my intestines used to be a hot mess.
Just like with my stomach troubles, the timeframe for the beginning of my ovarian dysfunction isn’t really clear. I may have been 16 when my doctor recommended the pill to “control” my hormones. I didn’t want them controlled, I just wanted the pain to stop. I didn’t have PMS or mood swings as a teenager, I just had the worst pain imaginable during my menstrual cycle. It felt, and if I’m not mindful, can still feel like a hand is inside me squeezing my uterus. Other times it feels like my uterus might just fall out. The worst is when it feels like I will pass out. My legs go numb and I don’t think I can stand or walk. Often times I would just lay in the floor wherever I was so that I didn’t fall. Those times were not few and far between when I was a young girl and a young adult. That was my normal monthly periods. I don’t remember missing school, but I do remember suffering at school. My period began when I was in 5th grade. You can imagine the difficulty of dealing with a painful period when you are only 11 years old.
The worst of the pain years was concentrated in high school but still came around every few months through college and as I joined the workforce. There are many times where I had to tell my technicians that I would be in the back in the floor and when the pain stopped I would get up again and work. These episodes usually lasted 20 to 30 minutes, but I have had times where it lasted hours. The pain happened even on birth control and Ibuprofen around the clock. I often wondered why I was taking birth control in the first place if it didn’t do a thing to control my period pain.
Whenever I would describe these episodes to the multitude of doctors that I saw over the years, not one single doctor acted like that was abnormal. I had some tell me that was just having a period. I believed it. I actually thought suffering was just par for the course. I thought I was normal, that the pain would be something I just had to deal with for the rest of my life. I had no idea that the pain was my body crying out for help. The first of many signs, just like my gut pain, that something was wrong.
Pain became the norm and I went on with my life. I was embarrassed when it happened at work and frightened if it came when I was out driving by myself. Back then I couldn’t determine when the pain would come and as I got older it was less frequent, maybe every other or every third period. I never once thought that the pain might be a sign that long-term damage was happening and that hormone dysregulation and my gut dysfunction might ultimately lead to infertility. Infertility, a heart-breaking, soul crushing, word that is now a part of my identity.
I had always wanted to have children and to be a mother. Sometimes I dreamt of living on a large plot of land with flower gardens sprinkled throughout, children running around, lot of dogs, and maybe a cat or two. I wanted to have twin girls. Twins run in my family; my grandmother was a twin, I have aunts that are twins, and then my other aunt gave birth to twins. I thought for sure I would be the next generation’s mother to twins. I thought all that would happen eventually. My first husband was in the military and we moved around quite frequently. We started to “try” to have children while stationed in Alabama. All the other army wives around me were getting pregnant quickly. I thought my time would come quickly too. It didn’t. When I look back on that time of my life, it’s not hard to see how the stress of being a pharmacy manager, army wife, and young adult contributed to an increase in menstrual woes as well as a new symptom of disease and dysfunction.
Even though this might be the most embarrassing part of my autoimmune diseases, I am going to tell it anyway. So, here it goes. I have a disease called lichen sclerosis. It sounds like some sort of weird mold or fungus and I felt like a gross version of my self for several months before I finally went to a nurse practitioner on post for help. It started with just mild itching on my outer labia. Then it just got worse. It itched all the time. It was worse when I was on my period. It hurt too. I also felt like I could never satisfy the itch. I was worried I had some sort of STD or raging bacterial or yeast infection. But then it would randomly resolve itself before I would go to the doctor. The itch would be gone, the redness gone, and all would seem well. I could not figure out why it came and went. I got a mirror and tried to check for some clue that there was something growing on me. There was obviously something not right, but just by looking at my vagina, I couldn’t tell anything was amiss except for a white patch on the inner fold of the labia, right where the itching normally occurred.
On top of this itchy situation, I still wasn’t pregnant and the new vaginal symptoms made sex painful. I think that’s what finally drove me to finally make an appointment. After months of dealing with the urge to scratch myself all day and night, I would finally take myself to the doctor.
Lichen what? I remember the nurse telling me in a matter of fact way that lichen sclerosis is actually more common than one would think (if you google itchy vagina that doesn’t even come up) and yet I had never heard of it and certainly never remember hearing about it in pharmacy school. Lichen sclerosis, she explained, is a form of eczema. It can affect the entire vulva and surrounding tissues, even the anus. It needed to be confirmed by a biopsy, but she was 99% sure that this was what was plaguing me for months. She also told me stress was why it would come and go without any rhyme or reason. Treatment was to minimize stress (not very likely for me at the time) and the use of a topical steroid to treat and minimize flares.
Clobetasol, a steroid ointment, became my best friend for several days, as I generously slathered the goop on myself; eager to stop the itching. Steroid ointments are wonderful inventions of the modern world and they help so many people manage symptoms of eczema and psoriasis. However, they aren’t without risks. Even small doses of corticosteroids can thin the skin or cause atrophy, cause pigment alternation, delayed wound healing and exacerbate skin infections. Prolonged use can cause permanent stretch marks (striae) and suppress the hypothalamic-pituitary-adrenal axis.
The steroid ointment helped and soon the itching was gone and stayed away for long periods of time.Even to this day it will flare up if I don’t minimize stress and, I learned many years later, if I eat or drink certain foods that I am sensitive too like gluten and some grains. Alcohol, especially beer, will cause a flare as well. At the end of the day, lichen sclerosis, along with eczema and psoriasis, is an autoimmune disease. Lichen sclerosis isn’t my first battle with eczema.
When I was in elementary school and into middle school I had severe eczema on my skull, right behind my right ear. It would itch, flake, and hurt. I used topical steroids and medicated shampoos to try to control the itching and redness. I could scratch so hard sometimes the skin would bleed. I wish I could remember more about this particular time in my life but the elementary and middle school age just seems to blend together when I try to recall instances of flares. Eczema comes and goes in flares, just like many other autoimmune diseases. I am sure that there were times I really struggled with this dynamic and times it was barely there at all. Then it was just gone. The steroids may have played a part in the regression, but I believe my immune system just moved on to another target, my uterus, ovaries, and gut. Growing up I believe weird things just happened to me. I didn’t give it much thought and certainly no adult or doctor thought there was anything to be concerned about in the future. I had seemingly random things happen to me, none of which seemed connected.
So at 28 (or somewhere around there) I was diagnosed with lichen sclerosis and I still wasn’t pregnant. This diagnosis did not help me understand the real why behind the disease. Yes, stress is and was involved, but that couldn’t be the only reason. I had no idea what was going on and I often lived in fear of a flare up. Not only because the embarrassing urge to scratch, but the pain it caused during sex. It seemed like it was a joke being played on me. I wanted to get pregnant, instead I got an itchy vagina.
I had no close emotional support. My family lived states away and my husband was busy and emotionally distant. I had a few friends, but they were getting pregnant and preparing to be moms. I struggled to even be around them and just hoped to move soon and maybe make some new friends who were not pregnant. Looking back now I see how strained my marriage had become. I think about these years as the sad years. I cried alot. I began to have so many doubts about my future and all the hopes and dreams of childhood seemed silly.
The move to Texas came as a relief. A new place, new friends, maybe a new start. I loved Texas. I felt happier in some ways. However, becoming a mother was not going to be in my immediate future. My husband was going to be deployed and all talk of being parents stopped. He did not want to seek medical intervention with a deployment coming up and I let my dream go for a few years, believing that it just wasn’t the right time and that was why I wasn’t pregnant yet.
I started focusing on my health by running. Running was never something I did as a young adult and it was a struggle. I became obsessed and decided to run a half marathon and then a marathon. I thought running would make me skinnier and healthier and it was a relief to focus on that rather than the loneliness of deployment and the stress of being a pharmacy manager. Now I know I was running from a dark cloud hanging over me. I would not have classified myself as depressed then, but I know I was. I was depressed and anxious and I was alone. My heart hurts for that woman that I was, the woman running and running and running from her troubles. I was using the adrenaline from long runs to fill alive for a few hours. Even though I was using the excessive running as a drug, it did give me something to focus on and I was able to make it through Texas alone without totally losing myself. I made friends and visited some amamzing cities. I traveled to several areas of the state to run marathons and that became my identity. It was easier to be a runner, than to be a stressed out pharmacist or a infertile woman.
Years alter, it took a lot to let go of this identity that I created. Lettig go of that identity was one of the best things I ever did for myself. I had to move again, change how I view fitness and health, and get a divorce. My life completely changed within a span of 10 years and my future was so much different than I had ever imagined.
Follow me as I write my story and explain the correlation between all my broken body parts and the poorly regulated system behind it all, my immune system. I will delve into my mental health, my infertility, my thyroid struggles, and my quest to heal physically and emotionally. I hope this story resonates with you and I hope it encourages you to find the reason you are struggling and not get swept away with treating symptoms, your body’s cry for help.
This journey is hard, but it is worth it. No matter how much I have struggled, there has been an equal amount of growth and thriving and I am grateful for all the challenges.
