Endometriosis Symptoms began with Menstruation
I remember that day perfectly. I was eleven, in the sixth grade, 4’8 with brown frizzy hair – in the midst of that awkward transition from girl to woman. It was the first time that my Dad had taken me to the doctor (the pediatrician to be exact). My dad – a sympathetic and caring man – quite naturally hated seeing his daughter in so much unsubstantiated pain. Usually both he and my mother would accompany me to the doctor, but today that responsibility was left solely to him. As we sat in the examination room, him in a plastic chair and me on the examination table – feet dangling off the side, I remember hoping not for an answer but for validation, validation that my pain was real.
When I was ten I started getting these mysterious ‘stomach aches’ they’d come and go and with each one I’d go to the nurse and the nurse would tell me I had to stop avoiding recess, or gym, or whatever activity I decided to skip that day. To be somewhat fair, I would usually go to the nurse during gym. My doctor sent to the gastroenterologist several times, with no luck. The gastroenterologist suggested that maybe I was lactose intolerant and that I should take lactaid. No tests were ever run – I was told; “take lactaid and if it helps, your problem is solved.” My problem wasn’t solved but I still took the lactaid hoping that eventually it would work.
So there I was – at the doctor, missing yet another day of school, with my Dad in his suit, missing yet another hour of work. The door opened and in walked my pediatrician, disapprovingly muttering my name at the sight of me yet again, in her office. We went through the steps, her feelings my abdomen, asking me about my eating and bathroom habits, the works… Except this time she seemed more exasperated than usual “Jordan” she said emphatically “You are like the little girl who cried wolf, there is no reason for you to be in this much pain. If you keep ‘crying wolf’ one day you might actually be very sick and no one will believe you. Don’t make me send you for a sonogram!”
How I wish I wasn’t 11 years old at the time and absolutely petrified of a sonogram; which I assumed to be some gigantic needle that would be placed through my forehead or some other awful place. Needless to say, I never got that sonogram until about a year later, when I rushed into emergency surgery for a problem that a sonogram could have picked up a year earlier.
The average endometriosis diagnosis takes 7 years; fortunately, mine only took 2 ½. The day I found out I needed surgery I had an appointment with an endocrinologist to discuss why I was so short. I was born with a Ventral Septal Defect (VSD) – a hole in my heart- which took longer to close than expected. For some reason, unbeknownst to my doctors, I failed to thrive as a child. I was mentally advanced but physically I was in the 1st and 3rd percentiles respectively for height and weight. I was very small.
I had gotten my period for the first time 6 months prior to that appointment. My period would come every 7 days and last for about 11 days. When I did have my period, I would be incapacitated for the first several days, writhing in pain, unable to move from fetal position. My doctor told me “Welcome to being a woman, you must have a very low pain tolerance; it should get better within a year.” Well, it didn’t. So there, at the endocrinologist, I laid on the examination table, curled up in more pain than usual. I was sweating and barely coherent. My mom stood there wiping my forehead with a cold paper towel. The doctor walked in took one look at me and her face contorted with horror. “What’s wrong” she exclaimed as she made her way over to examine me. As she made her way towards me I jumped up and ran across the room, barely making it to throw up in the sink. My mom followed after me; “she has her period” she nonchalantly conveyed to the doctor, since this had become the normal routine in my house. My doctor took another look at me, shook her head at the insistence that I had been lead to believe this much pain was normal and called for an orderly to escort me to the emergency room.
Uterine Didelphys: Two Uteri
Less than three hours and one morphine shot later, I was being prepped for surgery. Turns out my periods were so out of sync because I have uterine didelphys – two uteri (aka the plural of uterus). One of my uteri, was blocked and so when I would get my period, the blood wouldn’t drain, rather it would collect in my uterus. Every time I got my period my uterus would contract and try to push out the 6 months worth of blood that had collected in my uterus – to hold all of this blood and uterine matter my uterus had filled to what was analogized as the equivalent of being 3 months pregnant. They removed the blockage and told me that was it, the pain would be over.
Except the pain wasn’t over and six months later, I was back in the hospital for exploratory surgery to try and find the cause of my pain. After an hour long procedure, it was discovered that I had mild endometriosis. My surgeon told me they removed all of the endometriosis and that was it, the pain would be over.
Except, the pain wasn’t over and still isn’t. There is no cure for endometriosis. While surgery has alleviated some of my pain, it has not cured the disease. I am 21 now; I have had 5 surgeries for what is now stage IV, recto-vaginal endometriosis that is working its way up towards my liver. Altogether I have had 15 surgeries – 9 for my eyes and one to remove a cyst unrelated to my endometriosis. I know pain better than I know my best friend but not once have I let pain get in the way of my life. I went to prom with a 103 degree fever, half delirious from morphine, with my clutch overly stuffed with pads and tampons. In addition to my endometriosis, I have a lot of auto-immune and digestive issues. I am highly sensitive to yeast, I have thyroid disease, glaucoma, and I suffer from migraines.
I have a secret though, a secret for dealing with my pain. Even though on paper, I might not be healthy; I live my life as if I were healthy. I decided that I wasn’t going to let myself (or rather my body) stop me from doing the things I love to do. Some days that is harder than others but it is all about positive thinking and motivation. Your body is your temple; you need to take care of it. I am a vegetarian, I do yoga and I try to love my body, even when it doesn’t love me back. My rough road to womanhood has taught me strength and has given me the ability to stand up for myself and what I know to be right; and for that I am thankful.