It is true and sometimes a little hard to let the word “disease” slip out of my mouth.
The disease is Endometriosis. I have suffered for 9 years, beginning at age 13, and have been diagnosed for 9 months, at age 19. I am now 20 years old.
To start from the beginning, I will describe my life as it was going. I was in 8th grade, experiencing first boyfriends and high school. I was a dancer. The day it first hit me was pure shock and confusion. Yes, I had started my period and had the talk with my mother about cramps and such things. But this day was completely different. I was sitting in my 8th grade math class, after lunch, and my skin felt like it was tightening. I had chills, I had abdominal pain like never before, I was sweating and shaking. What was running through my mind was just different angles as to why this was happening and self-diagnosing myself about bad eating habits, especially the lunch I had just thirty minutes before. I was terrified.
The same thing started to happen now and again. And being young, energetic, and no real responsibilities, I seemed to just get through it. I had convinced myself that this was normal and what every woman goes through during their menstrual cycle. So there was absolutely no reason for me to tell anyone, ask for sympathy, or see a doctor.
More and more frequently the pain and oddity of chills and sweating came across more than usual, and sometimes no where close to my menstrual cycle. At dance class, I found myself holding back, concentration was broken during school. I was in pain and just sitting there in wonderment about this mysterious pain.
I finally brought it up to family members and scheduled my first doctor’s appointment. This was about 9th grade. I was still very young, so my mother took me to my pediatric doctor. It was so unusual to him. I was tested for gallbladder issues. And of course nothing. There were questions about my appendix and everything in that area. Anything besides the female reproductive system, because of course, I was too young for those sorts of problems.
Time went by and the pain got worse. I was constantly calling my mom from school wanting to go home from school because I could not focus, I could not sit comfortably in my seat, and I could not convey this pain to anyone else. I remember very frequently coming home and going directly to bathub and soaking in hot water. Then getting out and laying on the bathroom floor, shivering and sweating. The conversations with doctors and family members came down to “you just get bad cramps” and “some women have bad pain and some don’t”. The bottom line is it affected me mentally and physically.
Finally, my first appointment came with the gynecologist in 10th grade. I had an exam and the words she spoke just mixed all together. The words that stuck out to me were ”cysts” and ”ovaries” and ”infertility” and ”endometriosis”. Endometriosis? A disease? Infertility? Being fifteen years old, I was not really able to fully connect to these words. My only option appeared to be birth control.
My first experience with birth control was not the best. I could not see how it was helping with the pain (because it wasn’t), and why I needed to worry about my periods being on a regular schedule because that was not the greatest of my worries. And my luck, I seemed to get the worst side effects. But then, what were really the side effects and what was the disease? I spent my mornings in high school throwing up in the bathrooms and one pill seemed to make me lose my hair in a patch, or was it the stress? So many questions and no answers. I took it upon myself to research this endometriosis on the internet.
I found a page about a laparoscopy. I had learned this wouldn’t be the cure or an indefinite solution, but it could help. I brought this up to my doctor and my mother. Being sixteen, I was apparently too young for a procedure of this sort. I didn’t really understand because any procedure with hope was worth trying to me because at this time my grades were plummeting and my mental state was purely stress.
Because of my unpleasant side effects from birth control, my irritability, and most important to everyone else, my grades and attendance, I was turned to a different kind of birth control. This was a shot. A shot that stopped my periods. The logic was: no periods means no absences from school. And more logically, without a period there would be no pain. I went in for the shot and the doctor said a little something that could have been a big something with a little more patience and care for a patient. ”You may gain a ‘little’ weight, or you may lose a little weight” she said. Little did I know, this shot would be life altering to me.
Not having a period had its pros and cons. The pros are obvious, but the cons seemed to weigh out more. I found myself moody, more than usual, I was tired, sad, and angry all the time. Then I gained weight. Throughout the months, getting dressed was a more difficult task than ever. Nothing was fitting me! My bra size increased 3 cup sizes, my pants size went up 8 sizes. I couldn’t believe it, and harder yet, cope with it. I was upset. I heard “you’re still beautiful” and “maybe you don’t eat right” and “it will go away”.
By junior prom, I had gained 40 pounds. Dress shopping, being fun and exciting for all of my friends, was a difficult and depressing task for me. I cried in every dressing room for the lack of dress sizes to fit my ever-growing breast and hips. I was depressed. I lost my confidence, my self-esteem, and myself through the span of 5 months.
Graduating high school was a different stress on its own. My absences were too much, and without a diagnosis for a chronic disease, there was no chronic disease. Needless to say, I had to work my butt off.
After that I stopped the shot. I basically just could not take it anymore, feeling like I was pregnant with no baby but at the same time had the stretch marks and hips to show it all at age 17. I pushed onward, tried working out, tried dieting, but the only way I can describe it is “swollen”. I just felt swollen. And if someone were to poke me with a pin, I would burst.
Months after the shot, the sadness and depression followed. Getting off the shot didn’t take away the weight or the bad feelings about myself. I was sad I had nothing else to turn to and no one to turn to that could understand. I was angry.
The beginning of my senior year was the worst. I had the weight gain. I had depression. I had anxiety. I was told I would not graduate. Going through these things, bottling them up because you think no one wants to hear it, is so unhealthy. I went into a depression so strong I attempted suicide.
I am not hear to blame that on endometriosis, or the shot, or anything at all except for the pure fact that a person is a person. And no matter who they are, if they need help, pride needs to be set aside to get it. I was so alone in my head because of what I went through and unable to reach anyone. Feeling like, “Why should I feel sorry for myself? Why should I ask for help? So many people in the world have it worse than me… Why am I complaining?”
Surviving that and all of that being said, I finally had my procedure done September of 2010. They found endometriosis. It is no where in my body that can be safely removed without long term damage.
I am a very firm believer that everything happens for a reason, as cliche as it has become, but I find comfort in it. A disease is something that can be who you are, or make you who you are.
Today I am the person it made me. I struggle at times, but know when I need help. I know I survived for a reason, and it may be many reasons, but one I know for sure is to be an example of a strong woman. To give hope to others. I want to be dedicated for being the person that understands, maybe the person I didn’t have when I needed them.
I want my story to be something to relate to. Not just to the person reading it, but to give me someone to relate to also. No one should feel lonliness in a disease that effects so many.
I love who I am today, and endometriosis has brought me to a place more in tune with me and my feelings as well as a place more in tune with others and their feelings.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.