As told to Nicole Audrey Spector
My very first period, which I got when I was 13, was a real doozy to say the least. There was so much nausea, so much fatigue, so much pain. And so much blood. No menstrual pad was thick enough to contain the flood that was pouring out of me, and my attempts to insert a tampon were too torturous. I wore diapers.
Each period that followed the first was just as bad. My period could last well over 10 days without any relief. It weighed heavily on me. I was always a sporty and happy child. The girl was gone. I lay in bed more than I did in gym class, and when I made it to school during my period, I was anxious and self-conscious because I often bled through my clothes.
I wondered if there was something wrong with my body and if my period was abnormal. But everyone, including the doctors, told me that I was fine.
By the time I was 19 and a sophomore in college, I could barely hold on. At this point, my periods sometimes lasted not just weeks, but months. Everything I ate made me vomit and I was so constipated that I seriously couldn’t poop. I was disappearing. I was no longer healthy and athletic, but weighed 60 kg. too sickly and frail. I was a straight-A student, but now I could barely make it to class. My grades dropped along with my weight.
I was extremely proactive in advocating for myself and was determined to get a diagnosis. But no one else was. Within five months, I saw about 25 doctors in three states, all of whom said I was physically fine as they watched me writhe in agony on the exam table. A doctor brought my mother into the hallway and suggested she go to a psychiatric hospital. He pointed out that I am at an age where mental illness is common. My mother wanted to take me in, but couldn’t because I posed no danger to myself or others.
Doctors, my family, even my best friend: they all thought my torment was something psychological or, worse, a masquerade to get attention.
My health continued to deteriorate. Later that year, my husband found me passed out on the floor. I was burning up, with a temperature of 104°. After trying to cool me down in the shower, he rushed me to the emergency room, where doctors diagnosed me with a kidney infection. They said it was caused by an ignored urinary tract infection. I was offended and knew this was a misdiagnosis. As a competitive swimmer, I was all too familiar with urinary tract infections. All these painful years had nothing to do with a bladder infection.
What would it take to get people to listen to me and realize that my body is being destroyed?
It turned out that I was going to die.
After I was given antibiotics and discharged from the hospital, I was too weak to walk. My husband carried me to the car. My last memory is picking up my phone and then dropping it.
Two days later I woke up in the pediatric intensive care unit. The doctors told me that I had been taken to the emergency room. DOA: Dead on arrival. They managed to revive me, but then I programmed twice more. My fever was so high that doctors feared I might suffer brain damage. I went into septic shock and my kidneys were struggling so much that I almost needed dialysis. In order to have a chance of recovery, I was put into an induced coma.
It all took until I got what I’d been begging for since I was 13: the time of day – and a diagnosis.
A doctor told me I had endometriosis.
“Endo what now?” I said. I had never heard that word before.
He further explained that the endometriosis had caused lesions along my pelvic cavity. The lesions grew so large that they tore out tissue and formed new collections of scar tissue called adhesions. Adhesions can act like spider webs and attach themselves to nearby organs. That’s what was going on inside me. They strangled my ureters and rectum.
Surgical scars
Endometriosis is a whole-body disease for which there is no cure. But there are effective treatments, including special excisional surgery aimed at removing endometriosis lesions from their roots. Root removal is crucial and challenging for surgeons because the roots are often deeply hidden.
In the 20+ years since my final diagnosis, I have had six surgeries related to endometriosis. I had organs removed including my cervix, fallopian tubes and uterus.
Each of these procedures was hard for me, but the hysterectomy was uniquely difficult to endure. I have strong maternal instincts and have always imagined being a mother. I was incredibly angry that I had lost the ability to bear children, an ability that might have been retained if doctors had believed me when I was younger.
Allison and her husband
Considering how much endometriosis hurt me, it would make sense for me to feel nothing but hate for it. But hate is a trap that keeps you from experiencing the beauty of life. That’s why I choose to feel love when I think about what endometriosis has done to me.
I can honestly say that I greatly appreciate the gifts that endometriosis has given me. I have become more confident, accepting, compassionate and free. This condition inspired me to create art that I would never have created without it. This led me to write and publish a book for girls about endometriosis, exactly the book I would have wanted as a girl. I’ve learned to channel my motherly instincts in ways I never thought would be enough. (I lean heavily on my cats!)
Living with endometriosis—even if you’re in complete remission, as I am now fortunately to be—is living with a black hole of grief inside you. You may feel like you are being pulled into the negative void. The trick is not to hide from the black hole, but to embrace it. This does not mean that you dismiss or bury your grief and anger. It means allowing the full extent of your feelings to be felt without resistance and trusting that none of this darkness can exist without light.
I often think about how other living beings deal with fear and threat. Did you know that as a bison? Do you see a storm coming, do you turn around together and walk through it? They instinctively know that trying to escape the catastrophe will only result in their death. And we’re really no different. To survive the storm, we must go through it.
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Our “Real Women, Real Stories” are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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