Endometriosis Awareness

March is Endometriosis Awareness Month. Those who suffer from endometriosis know that it can be a very painful debilitating disease. Endometriosis is an inflammatory condition where the lining of the uterus (womb) can be found in other parts of the body such as the ovaries, Fallopian tubes, abdominal cavity and even in the brain and lung! This ectopic uterine tissue responds to the hormonal changes of the menstrual cycle and results in inflammation, chronic pain and even infertility. Unfortunately, not a lot is known about why this condition exists, and there is currently no cure.

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Not a lot of people are aware of endometriosis even though it affects 1 in every 10 women. Thus, today I felt moved to share my friend and colleague Dr. Imani Caldwell’s battle with endometriosis. I admire her strength and candor, and hope her story will educate and inspire. Her permission was obtained.

Imani’s Endometriosis Story

“I was 17 when I was first diagnosed with Endometriosis. At that time, the disease was relatively unheard of, and my mom had spent maybe 3-4 years prior to that, just carting me around, from one specialist to the next, trying to find a reasonable explanation for the pain that I was in almost daily, without fail. During that limbo, I was told by these same specialists that I had everything from a recurrent UTI to acute gastritis to a psychosomatic pain disorder. Meanwhile, I struggled in completing even the most basic tasks I was fully accustomed to.

“I was missing days upon days of school, in and out of hospital with a “clinically acute abdomen” just to be discharged hours later with the most basic of pain medication and no specific reason given to explain the absolute hell I was in. Looking back now, those hospitalizations were likely as a result of ovarian cyst ruptures that I continue to have even to this day; a very common finding in many women with endometriosis.

“After that first surgery, and a definitive diagnosis was made, I was placed first on short term therapy of “pseudo-menopausal” meds (namely Lupron) i.e, meds to shut down my hormonal axis with the aim of suppressing or preventing growth of lesions, and then on a long term, progesterone based therapy, namely birth control. At the time I was just relieved to know that the pain I was feeling had a name to it and while there was and still is no cure, treatment options, though limited, were available.

“The relief was short lived. The side effects of Lupron were horrendous to say the least, especially for a teenage girl just getting used to the changes happening in her body. For the first time in this saga, the state of my mental health became arguably worse than my physical. For a girl with big dreams, having to stop school just to deal with my health was a gut punch that absolutely wrecked me, and I want to be transparent enough to say there were moments I wanted out. Out of this world. And out of this body I thought had failed me. Many days I wondered why? Why did my vibrant spirit have to be trapped in a shell that I didn’t know, like or recognize? And though now, I am steadfast in my faith and stand boldly in the belief that all things do work together for good, ashamedly I say that sometimes that disconnect between body and spirit still permeates even to this day.

“I was mostly confined to bed in those immediate weeks after the procedure, to be completely honest I’m still not sure why, especially for a procedure with a relatively short recovery time. I was only able to move to the bathroom and the couch in the living room, and my diet became mostly liquid, coconut water, coconut meat and Supligen. I simply just could not tolerate solids. As the months went by, and as I clung to my faith and continued what medicine deemed was best practice at the time, I was able to find some relief from this bone weary battle of chronic pain and fatigue that I faced and by God’s goodness and leading I was able to return to school, and, to the shock of many, including myself even enter medical school (Won’t He do it!)

“Unfortunately, with the overwhelming stress of both keeping up with and funding my studies, as well as the long hours on ward rounds my baseline pain did return, and although I held out for as long as I could, I had to endure another course of Lupron in my final year. By the time final exams and internship rolled around, after many hospital admissions for extremely painful cysts the size of watermelons, the pain was again too much to bear. Even basic functions such as urinating became excruciating, and, with the advice from my gynecologists, in January 2021 I did my second surgery in 9 years at the age of 26. I was told the endometriotic lesions on my bladder were so extensive, a simple 1 – 2 hour surgery became 4 hours. I was sent home with a urinary catheter for a week and had traces of blood in my urine for many months post procedure.

“With all glory to God, and with the overwhelming support from my family, friends and physicians, I have made significant strides in the little more than two years since my last procedure. But here I am again having to make peace with the fact that without any further advancement in Endometriosis treatment, further surgery is likely, and will be the mainstay to offer me significant relief.

“This condition has made me learn to honor my feelings, accept what isn’t , live every moment out loud and without fear, and to always seek to make beautiful, lasting memories that I am able to hold tight to on the bad days. I have developed an empathy to the many varied struggles of my fellow humans as well as a thankfulness that guides my every step, and an attitude of gratitude for tiny moments of peace and joy, like those few seconds in the morning right after my eyes flutter open and my heart mutters thanks to God for allowing me to see another day.

“Although how my body feels is unpredictable, day by day, it is in those tiny moments that I am able to breathe in and prepare my mind for either what will be an ok day, i.e a day where I am sufficiently able to fake it through just enough to appear “functional” or a day that I’m pretty sure a freight train hit me during sleep and I prepare to fully grace my human frame in the pain that seems to even involve my finger tips.

“Quite honestly though, I’d be lying if I said I was not EXHAUSTED. Not just from my own battle, but from the fact that despite this disease affecting an estimated 1 in 10 women globally, many women are still left for years without proper diagnosis and treatment leading many to feel vulnerable, depressed and isolated. Those with endometriosis are absolutely drained from having their experiences trivialized into just being “a bad period” that a Panadol and a hot water bag can help. It won’t and it doesn’t. While some of my medical colleagues are now knowledgeable and sympathetic, some remain incredibly dismissive of the many facets of this disease. Endometriosis pain is more than just physical – it’s a constant battle that affects every aspect of life, a mountain sized burden on one’s partner, finances, mental space etc., and deserves to be taken seriously.

“I have refused to let Endometriosis define me, or to define how others see me, even while I still learn to walk through the many hills and valleys of this condition. As we continue to research and advocate for the cure that is urgently needed, my endometriosis sisters and I deserve a faster time to diagnosis, better and subsidized treatment options, psychological support services, menstrual leave (Yes!) and above all we deserve to have our voices heard unashamedly.”

Wrap Up

I hope Imani’s story resonated with you. If there’s ever an endometriosis support group in Jamaica, I can’t think of anyone better than Imani to represent. She’s the epitome of perseverance and pushing through pain– unfortunately, very literally. Continue to educate and inspire, Imani. For all the other endo warriors out there, continue fighting as we search and fight for a cure.

‘Til next time.

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