Endometriosis, Awareness, Fully Realized

The month of March is Endometriosis Awareness Month. If you don’t know what endometriosis is, I encourage you to look it up, because this article is all about awareness. I am trying to live a life with a debilitating illness that no one can see. An illness that has cost me, and many women like myself jobs, relationships, money, dignity and strength. Some days I cannot physically get out of bed. My bed sheets are consistently stained with blood. Each step I take to get to my array of prescription pills feels like knives digging deeper and deeper into places I never even knew could hurt. I take the pills, but they don’t help.

I take medication daily. Since finally being diagnosed with the disease in July of 2010, I have been treated with a cocktail of hormones and pain medications. When I say, “pain medications,” I am actually referring to over-the-counter NSAIDs like Advil or Aleve or Motrin. Doctors will never prescribe a chronic pain patient with anything more. The dangers of becoming addicted are far too great. I have been to the Emergency Room, screaming and crying and in so much pain that my body was contorted from the waist down, and doctors treat me like a drug seeker if I ask for anything stronger than Ibuprofen. So I sit there and pop Advil hoping it will take away the feeling that I can only imagine is similar to being shot in the stomach multiple times a day.  The hormones give me migraines. I take Aspirin. The Aspirin and my prescription NSAID (the only semi-reliable pain medicine I have) tears holes in my stomach, forcing me to go a week or two without any medication at all.

I bleed. I bleed constantly and every day. My iron levels are low. I am always pale. I suffer from rashes between my legs, down my legs, on my stomach. I have bled for three months straight, never missing a day, never letting up. When I go to the doctor they tell me there is nothing they can do to stop the bleeding. They increase my hormones. They restart my cycles. They give me cream for a rash they can’t identify.

I diet. I have changed my diet, constantly following trends on what is good for me to eat and bad for me to eat. I went on the ever-popular “Endometriosis Diet” that was pushed to me by my naturalist doctors in the UK and the nutrition specialists at Whole Foods. I lost twenty pounds in one month and while my pain was marginally better, I was extremely malnourished and dangerously thin. I eat regularly. On bad days, I hardly eat at all for fear that I will throw up everything that touches my stomach. I go to the doctor. They give me another pill.

I seek treatment. Colposcopies and laparoscopes and transvaginal ultrasounds and vaginal physical therapy and hormone therapy. My insides have been poked and prodded in every single humiliating way possible. More medical students than men have seen my vagina. I become detached from myself. At times, I have had upwards of five different doctors spread out amongst two countries working on my treatment. I go through diagnostic surgeries that total $30,000. I am diagnosed at 21 with Stage III endometriosis. My organs are already gluing themselves together and it is becoming more impossible for me to ever have my own children. I may be able to conceive, but my life will be rife with miscarriages. I don’t even have a boyfriend. I can’t think about children now. My surgery causes me to develop IBS. I vomit multiple times a day for months. I am given more medicine.

I fight battles. The extremely aggressive hormone therapy that I have been scheduled to start is continuously denied by my insurance company. The treatment is most often used to aid in chemotherapy. Its side effects are terrifying. Permanent bone damage and loss, extreme hot flashes, diabetes, chronic migraine, weight gain and permanent change of metabolism, loss of bowel and bladder control, loss of muscle use, hair loss, extreme depression, anxiety and suicidal thoughts. My insurance company tells me that they will pay for an ablation or a hysterectomy. Everything about this disease calls for sacrifice. I have to sacrifice my body to end my pain. But people don’t understand this treatment. They understand chemotherapy. They understand cancer and HIV and heart disease and organ failure. They refuse to understand a disease that they cannot see, a disease that is not killing me. I can’t go around telling people that endometriosis is like having cancer or HIV because my endometriosis is not killing me. But sometimes, I think, in a way it is.

I overcompensate. I push myself harder than most men at the gym, even though exercise always leaves me in excruciating pain. I thrill seek and run adventure races and obstacle races and travel and try to have the best grades, the most awards, be involved in anything and everything I can be involved in. I do not allow myself to rest because there is a part of me that always feels less than everyone else. I am broken and I try hard to convince everyone that I am not. I very rarely open up about my disease to anyone, and even when I do, I spare the “gory” details. I spare the fact that a good 70% of my week consists of being wrapped up in bed with heating pads and hot water bottles and pill bottles while I cry and scream because I just don’t know what else to do.

I fear. I hate when people tell me I can get over this, that things will get better, that I will feel better. My disease does not get better. It gets worse. The older I get and the more I bleed, the more I become a slave to my constant pain. I fear that I will never achieve what I want out of life because I will always be held back by pain. I fear that all of my serious relationships have ended in cheating because I cannot function in a normal sexual relationship. I fear that all future relationships will have the same ending. I remember the time when a boy I loved told me in an exasperated tone, “You will never be able to please a man in the way you should.” He was trying to clean my blood out of his bed sheets.

I fear that this disease will continuously isolate me from my own life.  I fear that being happy and healthy will never be my story. I fear that my interactions with people will continue to be tainted by perceptions that I am only pretending to be miserable for attention. I don’t want sympathy. Most of the time, I don’t even want anyone to know that I’m sick. I want normalcy. I want to be someone whose life hasn’t been wasted in the waiting rooms of doctor’s offices and emergency rooms, on the couch or in bed watching TV. I fear that people will never take the time to understand and will forever ask why I won’t settle down, why I don’t have children, why I can’t ever manage to keep a relationship going, why I came into work late, why I didn’t come into work at all, why I get fired from every job, why I can’t just get over it?