When last I left you I promised to continue sharing my experiences with Endometriosis. Still struggling with the fact that I may never be able to have children, I had vowed to move forward with my dukes up, ready for a fight. And that is what I did. Being sixteen, the first order of business was to attempt a normal teenage life. I wanted to go through high school with as little interruption and public humiliation as possible. After my surgery I went back to school as soon as I was cleared to drive, determined not to miss a beat. I attempted to appear normal despite the emotional turmoil that was always bubbling under the surface. I threw myself into anything and everything that would help build the illusion of normalcy. I would find a boy to have a crush on and dive in head over heals. I figured this is what normal teenaged girls did, only I did it with everything I had. Being the overachiever that I am, I took every AP or advanced class I could squeeze into my schedule. I play the flute and so also attacked that endeavor with a vengeance. In short, if I thought it would help me be a “normal sixteen year old” I pursued it. The problem you ask? Well, I didn’t just pursue things, I became obsessive about it. I would obsess over the boy I had a crush on, I would obsess over getting good grades despite the heavy workload of so many advanced classes, and I would obsess over being the best flute player my high school had ever seen… EVER! Within that desperate need for normalcy was buried a deep sense of inadequacy and depression that lay at the heart of what was really going on. I was physically sick and hurting, and I was drowning emotionally.
Amidst the emotional denial, my Dr started experimenting with different drugs to help me manage the endo. Some of these treatments were pretty mild, a low dose birth control or prescription pain killers. However, when those relatively noninvasive methods did nothing to control the pain we moved on to a drug called Lupron. If you have endometriosis you may have heard of or even taken this drug. It is a drug used as a chemotherapy treatment for men with prostate cancer. I never told my friends about it because how do you explain you are on chemotherapy but you don’t have cancer? How do you explain that the reason you have to take this drug is so that they can essentially turn your hormones off? Easy to explain to adults and I’m sure most of my friends would have understood if I’d had the guts to explain but I was too embarrassed. This drug is nasty, nasty, nasty. My parents still feel bad that they didn’t understand enough about it to get a second opinion at the time. So much more research has been done in the mean time and the side effects are much more widely known that had they suggested it to me now I would have said, “Not on your life!”
Lupron works by suppressing your body’s ability to produce hormones. For me this meant that by the time I was seventeen I was in full-blown menopause. I can still remember the first time I had a hot flash. It was like someone had turned an oven on inside my chest and it was set to 1000 degrees. I was walking through the grocery store when it happened. I could feel this funny sensation starting deep in my core. It quickly became a burning sensation that started at warm, rapidly moving toward balmy and finally turning into a down right inferno. It started in my torso and spread to my extremities in waves. All I could think was, “I’m going to melt, my skin is seriously going to melt right off of my body!” I pictured myself in that scene from an Indiana Jones where they open the Arc of the Covenant and it proceeds to liquefy the poor unsuspecting fools. Not quite sure what was happening, I was scared out of my wits, and sure I was going to pass out any moment. As discreetly as I could I moved to the frozen food aisle where I practically jumped in with the ice cream. I was convinced that anyone who saw me would actually see steam rising off of my body. I’d been standing there for some time when some poor woman cleared her throat behind me apparently waiting to get into the freezer. I quickly stepped back thinking that she was going to be sorely disappointed to find that I had melted all of the ice cream with my hot flash!
I found myself in all types of awkward circumstances during the time I was on this treatment. I overheard two of my female teachers talking one afternoon about menopause, hot flashes, and night sweats. In a rare moment of weakness I let my guard down and blurted out, “Oh, the night sweats are the worst! There’s nothing like waking up in the morning and feeling like you’ve just hopped out of a pool of your own body fluids!” To my dismay they just laughed me off not realizing that I really truly did know exactly what they were talking about. Again came the feeling that there was no one I could relate with or talk to about all that was going on. Certainly none of my friends were going to fully comprehend what was happening and anyone old enough to appreciate my predicaments thought I was too young to know better when it came to the throws of menopause. This became another excuse for bottling up all of those toxic emotions. In fact, I bet if you were to ask my high school friends I’m pretty sure that most of them would tell you that they had no idea I was even on chemotherapy for a good part of my senior year.
At some point the depression in high school overtook me. I wasn’t able to keep up the façade and the surface began to crack. I became so obsessed with normalcy that I was anything but normal. Finally something had to give and in a heroic moment of motherly proportions mom called the school counseling office and told them to pull me from class one day. The counselor explained her phone call and, reassuring me I wasn’t in trouble, he admitted that he was worried about me as well. He had pulled my unrealistic class schedule and after looking it over he suggested I drop a few of the advanced courses I was taking to lighten my load. My face crumpled in defeat. This was the last thing I wanted to do. In my immature young mind it meant that somehow I had failed. Failed at school, failed at being “normal”, and deep down I thought it would lead to failures with my health that I wasn’t willing to acknowledge. I’ll never forget what he told me next, “There is no shame in taking a step back and enjoying life. You are obviously very intelligent and capable, stop trying to prove it to the world and instead just believe it for yourself.” In that moment I felt a huge burden lift. I had never thought of it in those terms before. We chose a few class changes and with a lighter heart I left his office. This was the first of many lessons I’ve learned in life about how I deal with self-image. I’ve always tried to remember that I don’t need to measure myself by anyone else’s yard stick but my own.
High school continued and I survived, barely. The high doses of Lupron were beginning to catch up to me physically. When using Lupron to treat endometriosis they usually only like you to be on it for about six months. During those months I had melted the ice cream in the freezer aisles at local grocery stores more times than I could count. My hair, while thankfully it never fell out, was beginning to thin and break. I lost more than 50% of my bone mass sending me into osteopenia, a condition that can lead to osteoporosis but luckily is reversible, but this lead to severe bone and joint pain. It made me nauseous most days and I found later that it contributed to my depression, constant headaches, and weight gain. Sometimes the cure is so much more debilitating than the disease!
Around the time I graduated from high school, it was time to switch up the treatments. The plan was six months of Lupron followed by six months of intense birth control therapy and then back to the Lupron etc… All the while there were intermittent laparoscopic procedures done to clean out the excess uterine lining from my abdominal cavity. The intense birth control therapy wasn’t much better. I would take eight birth control pills a day (yes eight, I can see your eyes bugging out now) and skip the placebo week. The thought behind this treatment is to trick your body into thinking that it is pregnant. The irony of endometriosis is if, and I mean if, you can get pregnant the endometriosis goes away for the duration of the pregnancy. Remember endo causes uterine lining to grow outside of the uterus and when you’re pregnant the lining in your uterus changes and does not need to slough off, so it is with the lining outside of the uterus as well. At seventeen years old after experiencing the symptoms of menopause, I moved on to experiencing some symptoms of pregnancy. I had morning sickness everyday all day and despite this would gain weight like crazy. Just as my hair was repairing itself from the Lupron, it would change texture again from the pseudo pregnancy hormones. Up until this point I’d had perfect vision, this treatment caused swelling around my retina that left me with permanent damage so I had to get glasses and contacts. In the grand scheme of things this wasn’t too great a sacrifice, but pile it on with everything else and I was feeling pretty beat up. I kept thinking to myself, “Great, the “joys” of pregnancy, only I don’t get the bundle of joy at the end.” The emotional turmoil from these hormone treatments made my extreme PMS pale in comparison. If you thought my hysteria over a few cake crumbs was bad, you should have been a fly on the wall when I broke a nail one day. I’ll spare you the details, luckily I was home alone with no witnesses and so we’ll leave it at that. What happens during a hormonally imbalanced ranting moment stays with that moment.
It was around this time that I found a friend and confidant. Despite the fact that Julie was the same age as my own mother, I found more in common with her than any of my young friends. Once all of this started happening I found that I would gravitate toward older women because I felt a certain kind of kin-ship with them, sadly it was hardly ever returned. As mentioned before what woman in their late 50’s or 60’s really believes that a seventeen, eighteen year old can relate. I also needed a break from the “teenage life dramas” that my friends were experiencing. Had I a normal teenage life myself I’m sure I would have shared those concerns and I acted, for the most part, like I did. After a while though, I would sit amongst my friends and think, “This is so trivial, doesn’t anyone know what I’m going through? Doesn’t anyone care that there are much bigger fish to fry out there in the real world? For crying out loud, I may never have children!!!” Of course they didn’t know, because I didn’t tell them. Julie, on the other hand, she knew and she knew first hand what I was going through.
I met her through her kids. Although she was my mother’s age, she had been unable to have kids of her own and so adopted two little boys when she was a little older. She and her husband needed a babysitter for a short trip they were going on. We all know how much I liked to play house as a young girl and so you can imagine how happy I was to accept. When I babysat I really enjoyed the act of devoting myself to the kids. I loved it, I felt right at home taking the kids on outings, making meals, cleaning house. You’re probably rolling your eyes at me right now, but I can honestly say that these things make me happy. Kids always had a calming effect on me, and these boys in particular were able to sooth my battered soul. As the years progressed I would spend more and more time with their sweet family. Julie was my rock, my friend, the one person who fully understood what I was going through. She never dismissed me because of my age; in fact she had been through many similar treatments and suffered with similar health concerns of her own. She and I would laugh like school girls, cry on each other’s shoulders, and the best part? She welcomed me into her family as one of her own. They threw me birthday parties and called me the “sister with the yellow hair.” I’m positive that without Julie I would have tripped over the edge of my grief and pain and landed firmly in the deep end of insanity.
Our friendship endured through several years afterward. Eventually my career choices took me out of state. During this time she remained my true and loyal friend. She and I would talk always. I clung to her tightly, probably too tightly, but she never complained. So I had survived high school, albeit within an inch of my emotional life. I finally had a friend and confidant with whom I could pour out my soul and find support. I was still cycling through Lupron, pseudo pregnancy treatments, and surgeries but life seemed a little more manageable. Then the drug therapies stopped working. In a desperate move my Dr suggested putting me on Lupron for longer than six months, so I spent one year on these injections. It was a miserable year in which I don’t remember much. I think I’ve blocked it from memory out of necessity. While my pain was manageable, the side effects caused other health problems that left me struggling. I was so glad when that year was over but my relief was soon tempered by the return of the endo in full force.
This seems a good place to leave you for today. I know; another cliff hanger. I promise there is a conclusion, so don’t give up just yet. Stay tuned for a few more bumps in the road, maybe a few tears, and probably a good laugh or two along the way. Again, to be continued…