Shadows of the Past: Endometriosis Part I

If you had asked me as a little girl what I wanted to be when I grew up my answer was without a doubt, a mom! Sure I had fleeting dreams of being a nurse, or a teacher, but first and foremost I wanted to be a mom more than anything else. As a child I took life way too seriously, something I’ve thankfully grown out of for the most part, or maybe I’ve had it beaten out of me by the sheer force of circumstances in life. Either way I see it as a change for the better because I really needed to lighten up. I’ll explain. When I played, it was organized and as close to real life as I could make it. My dolls were on a set feeding schedule. They took regular naps and even had their diapers changed on cue. I was meticulous in how I played house. I did my laundry. I cooked extravagant meals with my play dishes. I even had a small ironing board on which all of my dolls’ clothes were pressed to perfection. My siblings found it difficult to play with me because I didn’t like it when they would “mess up my house” or make fun of my schedule. What I’m trying to say is that, other than the fact that I might have been slightly obsessive compulsive, I have taken my right to be a mother very seriously from the very beginning. It is what I have always wanted to do. It was and still is the deepest desire of my heart to be the absolute best momma I know how to be.

So it was with great sorrow that at the tender age of sixteen years old I was told that my ability to have children might be compromised. I had always had really bad cramps with my periods, almost since day one. These weren’t your typical menstrual cramps either. They were so severe that there were days when it was difficult to even walk. I would be doubled over, sweating bullets, just praying that no one noticed just how pale and shaky I was. After all I was in high school where we all can relate to the fact that image is everything to a teenager. It was torture! It didn’t help that the bleeding was completely unpredictable and extreme. I can remember my gynecologist asking me why I didn’t keep a calendar to track my cycle. I tried to explain that there were times when I’d go for two or three days at most between cycles and then others that I would go for a few weeks, if I was lucky, and sometimes I would bleed for weeks and weeks while others I would only bleed a day or two. Then there was the intense bleeding. Most often I would need to use those heavy duty pads, you know the ones; it’s as if you’re sitting on top of a pillow top mattress? Well I could bleed through one of those suckers in about ten minutes flat. And when I say bleed through, I mean totally soaked, running down my legs and still gushing. And tampons? Impossible, they were useless against the flow. Now, if you are one of my male readers, I apologize. For a better perspective go talk to your wife, girlfriend, a trusted female confidant, they’ll tell you this isn’t normal, nor is it fun. Needless to say this was not cool when I was in high school. Luckily I was able to avoid any really embarrassing moments; at least I think I did for the most part. I never wore white. I always carried supplies… a lot of supplies. I developed a good relationship with my teachers allowing me to maneuver leaving class when necessary.

It was such a hard thing for someone to go through at that age that I did everything in my power to hide it. I didn’t tell my friends what was going on. I was sure they couldn’t really relate. Besides it was taboo to talk of such things, even to a certain extent among your girl friends. Oh sure, I had a few select girl friends that knew some of what I was experiencing, but in truth, I didn’t really like to talk about it either. Then there was the PMS. I would only find out later that it was heightened for me because of my condition. There were many days I just wasn’t myself. It felt like having an out of body experience. We’re talking extreme PMS here, I’m sure to the outside observer I acted as if I was in need of an exorcism. At that age there was no way I could really explain to my friends what I was experiencing. It was all so foreign and frightening. The emotions were so out of control that one moment I would be fine and the next something small and insignificant would set me off. One afternoon I had come home from school and was looking for a snack. My mom had baked a cake the day before and there were a couple of pieces to finish off. I asked if I could have some and she proceeded to divide the cake between my sister and me. My sister’s piece came out of the pan beautifully and sat looking pristine and perfect on her plate. My piece, on the other hand, crumbled on the way to the plate and then tipped on its side so the frosting was smeared all over. I lost it. I mean I REALLY lost it. I started yelling at my mom, screaming actually, about how unfair it was. I was crying uncontrollably and putting out all kinds of crazed teenage dramatics. All the while I can still remember clearly thinking to myself, “What in the world am I doing?” It might have been comical had it not been so incredibly irrational. It was after I slammed my fist on the counter and started stomping my feet that my mom finally picked her jaw up off the floor and said, “That’s it, I think we need to take you to a Dr.”

Off to the gynecologist we went. As a sixteen year old this was the absolute last place I wanted to be. In fact, I don’t care what age you are, the gyno is the last place ANY woman wants to be. After sitting there with my mother discussing my symptoms with the Dr, he of course wanted to conduct an exam. My mom stepped out and the Dr proceeded with his work. It was the most embarrassing and painful thing I had ever experienced in my life, up to that point at least. The Dr just shook his head and told me that it shouldn’t have been so painful. He stepped out and let me dress. Afterword he and my mother returned. With a grim face he delivered the news. “I think you may have something called Endometriosis.” I’m pretty sure I said in my most ignorant teenage voice, “Huh?” He went on to tell us that the only way to be sure was to have diagnostic surgery. Apparently the surgery was to be no big deal, just a laparoscopy in which they make small incisions on your abdomen so that they can look inside and see what is happening. If they found endometriosis they would clean as much of it out as they could reach with a laser, cauterizing the areas afterward. I’ll remind you again that I’m just sixteen and so the thought of anyone cutting me open, whether the incisions were small or not, definitely did not strike me as “no big deal!”

Several weeks later there I was in the hospital at o’dark thirty in the morning being prepped for my “no big deal” procedure. I told only a very few close friends what was happening. This was heavy stuff to be dealing with in high school and no way was I going to explain things to the boys! I just left it at “I’m having minor surgery. I’ll be back in a few days.” When asked what it was for I would just say that they needed to look in my stomach to see why I was hurting and leave it at that. Sure there were a few more curious friends but I just refused to discuss it in detail. This left most of my friends wondering at my odd behavior. Which really wasn’t anything new since most of them had seen me have my attacks of drama. What they didn’t realize was that it wasn’t because I was an overly-dramatic teenager, but instead it was because I was quite literally out of control. These hysterics would follow me for some time in the future making it difficult to hold onto relationships of value. It was so hard for people to understand my behavior and why I couldn’t just “control myself.” Between the constant PMS, since my cycles were so messed up I was an emotional wreck 90% of the time, and living with chronic pain, well, I was really hard to be around. Those friends who stuck by me even when I lashed out and refused to explain things still have a special place in my heart to this day.

The surgery went off without a hitch. Physically it did indeed turn out to be “no big deal” but emotionally I was tied in knots. The worst part of recovery from a physical standpoint is that they pump your abdominal cavity full of carbon dioxide so they have plenty of room to move around and can easily see what they need to with their instruments. They try to remove most of the air after they are finished but inevitably some gets trapped. Later that night the air starts to move up through your torso where your muscles attempt to absorb it. This means that every time you breathe your shoulders and chest scream in protest. There were several hours when it was so painful to breathe I thought I might suffocate. The emotional recovery was worse. There was the fear of what the Dr was going to say at our follow up appointment. He had met with my parents and me after the surgery and confirmed that I did have endometriosis. It was extensive and he had done his best to clean me out. Up to this point I still wasn’t sure that I fully understood what this meant, but I figured I would be getting a clearer picture at my follow up appointment with the Dr.

Sure enough at that appointment the Dr delivered the news. I had endometriosis and the damage was widespread. I will let you read up on my link to endometriosis for more details. Here is a brief description from my point of view. This disease occurs when tissue that lines the inside of your uterus begins to grow outside of your uterus. There are varying theories as to why this occurs but, in truth, they really have no idea how it happens. Usually it is found in areas surrounding the uterus, the bowels and bladder, the inner lining of your abdominal wall, on the outside of your uterus or stomach and other organs. In rare cases they have found it as far away as the lungs. It can be very painful because, like the lining in the uterus, it swells and grows with the menstrual cycle. The problem is that, unlike what is shed from the uterus during your period, these deposits have nowhere to go. These clumps of rogue uterine lining go through the same cycles as the lining in the uterus but, rather than exit the body, they become toxic and cause scar tissue. In addition to endometriosis the Dr also thought that I might have a small pituitary tumor which was causing the irregularity of my cycles and the heavy bleeding. A tumor on your pituitary gland affects your body’s ability to regulate hormones. To sum things up for you, it wasn’t pretty.

There I was, sixteen, wholly unprepared for the burdens life was about to dish out. The Dr went on to tell me that endometriosis often causes infertility, then add to that the tumor on my pituitary, and it was unlikely that I would ever be able to get pregnant. He told me he would do all he could to help manage my pain, regulate my hormones and hold the endometriosis at bay with a combination of drugs and intermittent surgical procedures in hopes that someday I would be able to try starting a family. All I heard was no babies, no babies, no babies… My world cracked in two and I hung my head in devastation. To say that I was heartbroken is an understatement of colossal proportions. How does a teenager absorb this news, especially someone like me who wanted nothing more than to grow up and be a mom? I felt soul weary and much older than my tender sixteen years. This is a feeling I’ve felt many times in life and I can tell you that it does get easier with the perspective and wisdom of age. As a teenager though, this was something I was not prepared for. My mom and I sat in silence during the car ride home. What do you say? There is nothing to say, nothing that dulls the pain… nothing that makes it better.  My sadness was complete and all consuming. There was nowhere to turn. My mom had endometriosis and could understand the pain, the PMS and all that came with it, but she had three children. She could only relate to a point. None of my friends was properly equipped to understand or empathize. What teenager has the maturity to do so? I had never felt so bereft and alone. This was the beginning of a long, hard, emotional journey that I still struggle with today.

After a few weeks had passed I began the first exercise of many to come in my life of readjusting my attitude and expectations. I decided that I was going to fight for my right to have children. I wasn’t going to give in to this disease. I fought hard to push the doom and gloom away. I strove for a “normal” teenage life. I was determined to prove the Dr’s wrong and make the most of my situation. This might seem like a healthy mental outlook, and it is, but I also numbed myself to the pain and refused to come to an acceptance of the reality of what I was dealing with. This became a volatile mix of optimism and denial which would later come crashing down. In the mean time I think I did a pretty bang up job at teenage normalcy. If you can call being a teenager normal, ha! Well, more on that later. This story cannot be told in clipped tones and short order so stay tuned, besides who doesn’t secretly like a good cliffhanger… to be continued!

So as not to leave you with a sour taste in your mouth I’ve included a picture of my adopted sons and myself to show you that triumphs over sadness do come, even if it is packaged differently than what you first expected!