The first time must have been a year or two ago, but I dismissed it, thinking it was nothing more than a muscle cramp or leftover period pain. It made its appearance then left, so there was nothing left to think about.
Yet, it persisted. Occasionally throbbing or stabbing me. I was fine though, for it was not something debilitating enough to stop my workflow. Besides, my diet and sleep were terrible; if I get these two under control, I told myself, then the pain will go away. I looked at the calendar and deduced that this was nothing more than a severe case of PMS. Every woman has it.
The attacks came in waves, but they always aligned with whatever immense stress was engulfing my life. Writing deadlines. Heartbroken moments. The worst had me on my knees in a friend’s bathroom, vomiting for hours before my husband Geoff carried me to bed where I passed out from the pain.
Bottle after bottle of painkillers. They rattled in my purse. They were strewn across our apartment floor, because our puppy Lizzie loved to play with the empty bottles. I took enough to pass out; it was better to sleep than to try and work through the pain. My abdomen distended. It’s happened many times before, always a consequence of my poor dietary choices. The term “IBS” (Irritable Bowel Syndrome) was suggested to me several times. Okay, in that case, I’ll restrict my diet, I’ll exercise more, and I’ll take care to manage my stress levels. I listened to the dietician, to the nurse, to the naturopath.
It was my birthday when Geoff took me to the hospital. Perhaps I shouldn’t have had the sake with my dinner; alcohol occasionally triggers my symptoms. I convinced myself I was fine. Then I found myself lying on our bed, screaming in agony. I couldn’t stand up and the pain was becoming unbearable. Hours later, the doctor discharged with an over-the-counter prescription and no diagnosis. I went home in pain.
Just take painkillers and the pain will be fine. Perhaps that’s why we have an opioid crisis, because we’ve become accustomed to believing that a prescription is there to fix every undiagnosed condition. At the hospital the nurses and physicians, used to seeing blood and gore, and the worst of pain addiction, assessed my situation as non-critical. They weren’t rushing me because I wasn’t dying. That was good. Except I sat on the chair in the hospital waiting room, my head on Geoff’s shoulders, sobbing uncontrollably. The morphine drip was useless.
Weeks went by. The pain became entrenched into our daily life. We made plans, adjusted our schedule, and negotiated deadlines when we knew it was going to be particularly bad—usually around my menstrual cycle. The sound of the kettle boiling became familiar, as did the mild burn scars on my stomach from falling asleep with the hot water bottle. One day I slept for 18 hours. Most days I had trouble walking.
And I cried. I cried over cancelled dates, over frustration, over disappointment. I cried over the feeling I was a terrible wife and burden on Geoff. I cried because it was becoming too much, too difficult, and I couldn’t fix it. There were too many days of anguish and excruciating pain.
I kept convincing Geoff I was fine. It’ll go away, I was used to it, I just need to rest and make sure I eat properly. We went for long walks through conservation parks. I returned home to the pills and hot water bottles.
Weeks went by. I couldn’t do it anymore. It was also a Sunday, which meant most family doctors’ offices were closed, so we went to a walk-in clinic. Fifteen minutes later, I clutched in my hand a referral for urgent care—I must have some sort of abdomen or pelvic inflammation and need to go to the hospital immediately. We packed our bags with books to read, though we knew we would likely just be sitting in the waiting room for hours, staring at blank walls and waiting.
The first thing I noticed was neither of the two doctors who assessed me actually touched me, nor inspected my abdomen where I had a very specific pain. I pointed to my lower left quadrant and described the pain in detail. One doctor ordered morphine for me, even though I explained it doesn’t help. The pain is specific. We asked for an ultrasound and was told my lab work revealed all tests were normal.
The second doctor looked at the lab results more than he looked at me. I sat there, vulnerable and exposed, face stained from hours of tears, clutching to the left side of my stomach. Do doctors take women’s pain less seriously? Or is it simply a case of me over-reacting to a minor condition? I became convinced I was deluding myself, triggering physiological reactions to anxiety—I ignored the throbbing pain on the lower left side of my abdomen. I ignored it even as I caught myself taking a break from going up the stairs at the university, leaning against the wall and clutching my stomach.
Perhaps I have to suffer through the pain. As a historian of medicine, I understand how people have negotiated with medical practitioners over a “cure,” or even shopped for “good health.” How the horrors of pre-anesthetic surgery kept people afraid of the surgeon’s knife, and how pain became politicized, driving a tension between liberal compassion and conservative care.
Then there’s also the tremendous stigma surrounding pain and pain management, especially the invisible kind of pain. We have to dismiss objectivity and rely on the patient’s subjective experiences to understand the depth and degree of chronic pain, which can make it difficult to receive a proper diagnosis, or even be taken seriously. Especially if you have a “woman’s pain.” And of course, this is a problem. “When we tell a woman that her suffering is normal,” Heba Shaheed writes, “we take away her right to receive treatment for her pain.”
Geoff and I drove for nearly two hours back to my old neighborhood, to visit my doctor of 15 years. A day before, nearly half of my body was covered in a rash that I’ve never had before; it would worsen for several days before disappearing. I had lectures scheduled. Yet I could barely stand up. To prepare for another hospital visit, I cancelled a class. This upset me. I adore my students. I knew they would understand; some would even be relieved at having the day off.
More lab tests, an ultrasound, and an x-ray were ordered. Geoff phoned the doctor’s office daily to receive updates. “Her tests are normal.” No wonder no one takes my pain seriously; how could they when there’s no tangible evidence of any abnormality? We wondered if there was something wrong with my kidney, for my symptoms hinted towards a kidney infection. We made plans to follow up with another visit to the doctor.
The pain continued. I can’t eat, because the nausea overwhelms me. I slowly lose weight, but it’s hard to tell because my abdomen is still bloated. I do notice that some clothes that were too tight now fit me well.
A week goes by before we get a phone call. There’s a large “mass” – likely a cyst – and several large fibroids. I might have endometriosis, but I need further testing to confirm that, because it can be tricky to diagnose. The next step: an urgent referral to a gynecologist.
I collapse into tears. Not of pain this time (though the pain was certainly there), but of validation. For nearly two years I had been pointing to a very specific pain, only to have my concerns dismissed and a new prescription to fill. I was not imagining the pain. It is there, and it is real.
Now we wait.
Header Image: “Drugs and the Mind,” by Bill McConkey. Wellcome Images
Thank you for sharing your story. I have two friends in perhaps a similar situation. i hope you find a resolution to your pain asap.
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Susan Abernethy says:
I had ovarian cysts off and on for years. A trip to a woman gynecologist hopefully will put everything right. Wishing you all the best.
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Wendy Xie says:
This was pretty hard to get through, I could feel many of your frustrations and and emotional pain. I really hope you receive proper treatment and that it helps SOON!!!
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Liz Hay (@FOHAdviserLiz) says:
Yes, yes, yes. The politics of pain. May you be well, may you be heard, may your pain be relieved.
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