It Started in Childhood
My story of life with endometriosis begins early. I was four years old the first time I collapsed from anemia. I was such a character, my parents laughed at first thinking I was acting to entertain them only to realize quickly something wasn’t right and rushed me to the doctor. I was given liquid iron supplements with dietary changes involving raw liver, spinach, raisins, and other natural sources of iron, but energy levels were a struggle.
At the age of nine, I was a competitive baton twirler training for competitions. I suffered from severe seasonal allergies that seemed to affect me in ways the kids with asthma didn’t envy. While all the kids were running outside in the spring at recess, I was kept indoors until June looking out the window at all the fun because my eyes and throat would swell shut by evening (even with antihistamines) if I walked on the grass. Rapid weight loss prompted a visit to a GI specialist as adults around me openly suggested I was suffering from an eating disorder, making me feel ashamed and insecure about my body, and wondering what was wrong with me. I felt bad that my parents were having to defend their parenting to so much judgment and wanted so badly to stop the pain that dropped me to my knees during bowel movements. Maybe I was constipated. Maybe I was under too much stress. I was given a special diet and had to sit out of the annual 24-hour Fast for hunger at school while my peers hangrily accused me of not caring about poor kids that can’t eat. At that age it was the end of the world.
Puberty
My mother prepared me for puberty with careful age-appropriate discussion to alleviate fear when it should come. Nobody prepared me for the emotional roller coaster and pain I would be in for that is a “normal” part of becoming a woman. I didn’t take it well at all and was convinced my mood swings were evidence of a personality disorder. My energy levels dropped so low I couldn’t get up in the morning and the pain with menstruation felt like I was going to die. I would wake up to loving letters of encouragement from my mother on the night stand letting me know I was going to be okay and acknowledging such a confusing stage in my life. I was angry with her and angry with the world. Nobody understood how I felt and I resented having to go about life each day as if I was normal. My mother took me to doctors that all insisted I was just difficult. The battle to get me up in the morning stressed the entire household, with my father away at work and my mother trying to start the day with two other young children.
By my late teens the rifts and mood swings in combination with my stubbornness, tore my life apart. As one period ended, the fear and stress of the anxiety and pain to come was already beginning. I saw counselors and doctors. I was told to take Midol, that it was all in my head, and that some girls have a low pain tolerance.
My social life didn’t exist. I was an anxious ball of nerves ashamed I was so damaged and unable to snap out of it like a strong person. Why was I so weak? My senior year of high school involved a bout of rubella (even though I had been vaccinated), and a mysterious acute immune response we never gained answers for after numerous allergy tests and specialists. I almost missed my high school graduation, and drank water while my peers partied to usher the end of 1999.
Years of Pain and Anguish Before my Diagnosis
Young adulthood wasn’t any better. I would wake in a thunderclap of pain, crawl to the bathroom, and lock my boyfriend out of the bathroom so he wouldn’t see the blood spilling out of me. It looked like a murder scene, but I knew I wasn’t dying because it had been going on for years, and doctors insisted some women just have worse periods than others. I was just sensitive. I would spend my shower time fighting between washing myself and cleaning the tub with barely enough energy to hold myself up.
One night my boyfriend didn’t come home and I knew he was lying about where he had been. Too weak to fight, I went to the bathroom, feeling like I couldn’t breath, pulling my necklace off, telling myself he wouldn’t have done that if I was normal. If I could just have sex without it hurting, and stop my body from being so unfair to him weeks out of every month maybe he would love me. I took a bottle of antihistamines and told him I was going for a walk to think things through. I wanted to die, but I didn’t want anyone to try to stop me. Maybe if I wasn’t around anymore the burden on my loved ones could be lifted?
He came after me once he found the medication packages and took me to the hospital where he had my parents waiting. I went home with my mother and father who were so angry with the situation, and extremely concerned for my mental health.
I didn’t want to die. I wanted my pain to stop!
I desperately wanted to be normal.
Over the years the pain became worse and lasted longer and longer in the month. I was given birth control pills that made me feel mentally unstable and didn’t seem to make any difference in the pain.
Abusive Doctors
My worst experience with a doctor happened when I was 21 working in the art business. I was experiencing frequent kidney infections on top of my “menstrual pain” and pain during bowel movements that brought me to my knees. The pain during urination wasn’t like a UTI I had known before. It was different with stabbing pains on my left side. My ovaries throbbed and nodes in my thighs swelled, with pain shooting from my pelvic region down my thighs to my feet. I collapsed when I stood and decided I needed to go to the ER. I was given antibiotics and released with the doctor advising to return straight to the ER if it didn’t improve later in the week.
Later in the week, I was even worse. I had heavy “break-through” bleeding as my “kidney pain” escalated, which required that I attend the IV clinic multiple times a day for several days for antibiotics and observation. One particular morning the nurse noticed my pain was only getting worse. Something wasn’t right and the kidneys should be clearing up. The doctor on-call picked up the phone and I could overhear him telling my family doctor to stop being such an “censored” and come look at me.
My family doctor did come that day. He yelled at me. Berated me. Screeched how I needed to stop going to the hospital for attention! My kidneys were fine and I had nothing but mild inflammation and told me there’s no way my pain was where I was showing him. It wasn’t possible for me to have such acute pain on the left side and a little break-through bleeding is normal for a woman my age.
The middle aged woman sharing the room with me wept. The nurses rushed in teary-eyed after he stormed out to release me, and advised me I had the right to refuse to let him ever practice medicine on me again. I lay there crying until he returned to tell me he had already informed the ER doctors I was wasting everyone’s time, so don’t bother going back. I told him he was no longer my doctor and never to approach me again. “You need me more than I need you” he said, as he stormed out yelling how I need to get a life.
I was taken back down to the ER where I was sent for a vaginal ultrasound. The doctors were dismissive and insisted the GP I had just “fired” is a highly respected medical professional I should have appreciated more.
I had no infection, but inflammation was present and loose blood unrelated to my menstrual cycle was found. I was told “sometimes that happens,” and sent home to rethink my life.
I went from doctor to doctor until my weight ballooned from 125 to 165 pounds practically overnight. My boyfriend’s friends and family fat-shamed me as he sat in silence embarrassed by my appearance. I began having seizures, migraines, repeated bouts of the flu, then mononucleosis. A medicentre physician sent me for testing that revealed that I had Hashimoto’s disease even though my thyroid had been tested very recently with no results. He said, “they don’t normally check the more expensive test.”
It would take time adjusting my synthetic thyroid levels, but they said I was going to be fine. My weight dropped off naturally, but the pain became worse. I went back to the doctor that diagnosed my Hashimoto’s disease at the walk-in clinic, hopeful she would be the first doctor to listen to me. It was the first time a doctor ever suggested I may have ” endometriosis ” and I was referred for laparoscopic investigative surgery with a top gynecologist.
My life was in ruins and I ended my long-term relationship exhausted by the constant accusation that I was faking everything for attention.
Finally Diagnosed with Endometriosis
I had surgery on November 1, 2013 and a week later the gynecologist validated me for the first time of my life at the age of 31. He looked me in the eyes and said “this pain you’ve had most of your life is very real, but we don’t know a lot about this disease”. Ablation was done on the lesions he saw and I agreed to keep taking continuous birth control, but my pain became daily even in absence of a menstrual period.
My Lupron Nightmare
I went back to the gynecologist in hope he could offer a better solution. There was none. He suggested I research a drug called Lupron and make an informed decision to try it. I read women had devastating experiences on this drug, developed for end-stage prostate cancer (the one Lena Dunham has been taking), but I was desperate to try anything.
I wasn’t prepared for what instant chemical castration would do to my body. The day after my first injection I felt extremely nauseated, weak, depressed, hot flashes, and muscle soreness. I went to the doctor and was told it was too soon for the drug to be the cause. My pain continued to worsen with new symptoms and brain fog.
I would lose my phone only to find it was already in my hand, put the remote control in the refrigerator, left an oven burner on forgetting I was making dinner, and even left the house well groomed with a nice blouse forgetting to put pants on. “You’re not wearing pants today?” My neighbor greeted me and I ran home to tell the law firm I would be late and cried on my bathroom floor holding my pelvis wondering how I would live the rest of my days in such pain. Was I safe to live alone? I was alone, scared, and desperate.
My best friend encouraged me to try stand-up comedy, and I felt new freedom on stage for a few minutes trying to make others laugh. I had the opportunity to open for Jeff Lesson from Ontario early on, and as I continued my comedy set, pain shot through my rectum like a thousand knives. There is no running off stage to cry, so I finished and shook hands with the audience after the show. We went to a nearby restaurant with the other comedians and when I went to the bathroom I found something was protruding from my bum. The pain caused me to drop to my knees and I felt as though I could black out. On the way home I asked to be dropped off at the ER where I learned I had a prolapsed rectum.
Excision Surgery: The Start of Healing
In June 2014 I traveled to Calgary, Alberta with my mother for excision surgery, by a specialist with additional training specific to endometriosis. During this surgery it was found that my organs were glued together with scar tissue and being pulled by a spiderweb of adhesions, and my rectum torn out and glued to my vaginal canal by adhesions. The inflammation was so raw that I had to be assessed by an Acute Pain Team. The surgeon removed all the areas of endometriosis including my appendix, cut away all of the adhesions, and restored normal anatomy, including my vagina and rectum.
When I was in Calgary for excision I called a friend at 3 am crying incoherently that I was going to jail break from the hospital to steal cheeseburgers from Pete’s Drive-Thru (I had an elaborate plan set). I was on high doses of pain killers and still feeling the effects of the anesthetic. On the drive back to Edmonton my mother finally got me a Pete’s Drive Thru cheeseburger, but I fell asleep eating after a few bites. When we pulled into Edmonton I woke with my beloved cheeseburger stuck to the side of my face.
In recovering from my surgery, I’ve abstained from sex for years since my last relationship, focused on rehabilitation and learning to live a “new normal” with a multidisciplinary approach to care adding nutritionists, pelvic physiotherapist, acupuncture, mindfulness, meditation, holistic medicine, Reiki, and an army of professionals for an improved quality of life I was told couldn’t be possible with my endometriosis. I’ve even had one pain-free sexual experience that left me feeling like a satisfied woman for the first time in my 34 years of life.
In December 2015 a CT scan found benign lesions on numerous organs throughout my body. Although not surgically confirmed, they are suspected to be endometriosis. I know now that an allergic reaction can trigger my over responsive immune system and the inflammation can cause lesions to bleed, and scar tissue to develop. I am working with my multidisciplinary team for the best quality of life I can have.
No woman should have to go through the pain, humiliation, and isolation of such a silent devastating disease.
Stand Up and Speak Out
I have been EndoMarching with Worldwide EndoMarch since it’s first year in 2014 to put an end to systemic failure in care for endometriosis. I have met thousands of women, a couple of men (very rare, but some men have endometriosis too), countless medical professionals, and I’ve heard too many heartbreaking stories similar to my own. Frustrated doctors that want to help, and desperate families struggling to understand that also need support. One thing has been the same in all of the endo warriors I’ve talked to and that is an active willingness to do anything to make a difference to lift others no matter how bad they may have it. They have the hope and the will, but lack of access to resources to get the effective care/support they need.
I started crying when I read you’re story. It felt like you knew what had happened through my life. I am so sorry that you suffered in the way you did. I started suffering at around 12/13 when my periods started, Before that I was Juvenile rheumatoid arthritis since age 6. My mom had horrible painful periods, lets just say her parents are people I will never talk to in my entire life. She thought painful periods were normal so I thought I was just weak and couldn’t handle the pain. Though no other girls around me had as much flow or even close to the pain I ever had. They would walk around like they were never even on there periods. My anxiety through school was debilitating. It was not until 2011 that I was diagnosed. I had to tell them what I thought it was and fight and I mean fight to get a laparoscopy. The dr was far from nice. I was able to tell me what I though I had because I started to bleed rectally only during my period. They first though I just didn’t know how to wipe myself. I explained,excuse the bluntness that bleeding like you are peeing from your rectum is not easily confused with vaginal bleeding. They did a rectal test and sure enough I was really bleeding and pretty bad from it. I had to do the research because they were trying to say Crones disease, yet I didn’t have normal symptoms of it. I finally found the research on endometriosis and my drs pretty much laughed at me. Said they would have seen it on images. when I finally did have the laparotomy it turned into a bigger surgery then they ever anticipated! my ovaries were wrapped under my uterus, as they were for the second surgery as well. They found it everywhere. all of my organs were fused together. it was on my bladder and in my bowels. after the surgery my dr came in and apologized and said good for me for fighting her on this! She was wrong she said. I had stage IV endometriosis. My life has still been hell since. I am still fighting though.
I also had endometriosis and then Lupron in Canada. The mistreatments endured proved far worse than the original disease.
Oh dear! What an incredibly sad story. Obviously, because the story began at the age of four years, the early symptoms could not have been from endometriosis. What really burns me is that this unfortunate young lady was so badly treated throughout all those years. The trouble is that modern medicine has not yet caught up with the idea that the brain rules the body and that it has nothing to do with Freud. We know now that inflammation is controlled by the brain and endometriosis is clearly an inflammatory disease. I am so incensed by this horrible story that I have agreed with Dr.Marrs to write a post that addresses this subject much more fully. Because of this failure in concept, the lab studies that are used conventionally are often normal. Because the medical model states that the lab provides proof of the organic nature of the illness, it is then referred to as being psychological or psychosomatic. This poor young lady had absolutely apalling symptoms that were referred to by the physician as being somehow imagined and produced “for attention”. I am positively ashamed of my profession.