I read with great interest recent news about the planned opening of a multidisciplinary endometriosis and chronic pelvic pain clinic at the IWK Health Centre in Halifax. Hospital officials note that the facility will stand as the first in Atlantic Canada.
Nearly 200 million women around the world suffer from the disorder in which the endometrium — tissue that lines the womb — grows outside of the uterus and attaches in the pelvic cavity (and sometimes elsewhere). Unable to exit the body, the displaced uterine tissue can become inflamed with cysts and adhesions that trigger excruciating pain during menstruation.
Note to male readers inclined to tune out now: Imagine a sledge hammer pounding on the lower right quadrant of your abdomen and multiply the agony ten-fold. Then jab the same spot repeatedly with a red-hot poker. That’s the torment I endured for three days a month for 15 years. Given the prevalence of endometriosis, chances are high, fellas, that there’s a woman you care about who is afflicted with the malady. As Etta James put it: “Roll with me, Henry.”
My odyssey with the disease began when I was a college sophomore and one day found myself blindsided by severe abdominal pain. “What’s wrong with you?” my friend Gail asked, as I clutched my belly. “I don’t know,” I said, grimacing. “The only difference between yesterday and today is that I’ve started my period.”
Gail shot me a look that screamed “Send in the Clowns.” “You’ve got cramps,” she sighed and handed me a bottle of Harveys Bristol Cream and a Darvon capsule.” Take these and you’ll feel better in no time.”
To be sure, Gail’s “remedy” eased the pain. But my ordeal had just begun. My first medical consultation (circa 1974) about my period was with a white, male physician who, after a cursory pelvic examination, determined that I had gonorrhoea. He hastily wrote a prescription for Tetracycline and showed me the door.
I was dumbfounded by the diagnosis which the doctor made sans a vaginal culture or any other test for a sexually transmitted disease. Still, hoping to rid myself of menstrual pain, I filled the prescription. I vomited after the first dose and immediately trashed the rest.
I later shared the saga with Dr. Evelynn Hammonds, a distinguished historian of science at Harvard University. In her landmark 1994 essay “Black (W)holes and the Geometry of Black Female Sexuality,” Hammonds explores the damning perception of Black women, among many health care professionals, as both invisible and hyper-sexual.
“The white medical establishment routinely views Black women as promiscuous carriers of disease,” Hammonds told me. “At the same time, our real health needs and concerns don’t register at all. Anyway you look at it, our well-being is consistently compromised.”
As a participant in an early 1980s-era dysmenorrhea study at a major US university, I received a more sympathetic but similarly dismissive response. The lead researcher (white and female) ultimately declared my horrific cramps “psychosomatic.” The experience was especially disheartening as the researcher had shared with me her desire to boost the “demographics” of the study. Then as now, I suspect she counted my Black body as a statistical bonus. In the much ballyhooed parlance of today, let’s call it equity, diversity and inclusion (or EDI).
The exploitation of people of African descent in medical research has been well-documented. Consider the Tuskegee Syphilis Experiment in which several hundred syphilis-infected Black men in rural Alabama were intentionally denied treatment so that federal public health officials could observe “how syphilis affected Blacks as opposed to whites.”
Lured to the 1932 study through offers of free health care, meals, transportation and burial insurance, none of the impoverished men were ever told that they had syphilis.
By 1947, penicillin had emerged as a standard therapy for the disease. And yet the researchers withheld the antibiotic from the infected men. The study was not shuttered until 1972 when a whistleblower leaked information about the project to the press.
By that time, many of the men had unknowingly spread syphilis to their wives, lovers, and children (via congenital transmission). Scores of the men had died from the then curable disease.
Now meditate on The Immortal Life of Henrietta Lacks (2010) by Rebecca Skloot. The acclaimed book documents the pained journey of a Black woman who, in 1951, became the unwitting donor of cells that were harvested from her body during treatment for cervical cancer at the Johns Hopkins Hospital in Baltimore, Maryland. Later that year, Lacks, age 31, died of the disease.
Named after Henrietta Lacks, the HeLa cell lines have garnered multi-billion dollar profits for the cancer treatment, gene mapping, vaccine and in vitro fertilization industries. The struggling progeny of Ms. Lacks first learned of her vital role in scientific research through a chance dinner-party conversation, nearly a quarter century after her death.
It’s not been lost on me that the Black woman whose cells helped German scientist Harald zur Hausen develop a vaccine for the human papilloma virus (HPV) was first tested for syphilis (cue: damning perception) at the onset of her illness. The result was negative.
In 2008, Harald zur Hausen won a Nobel Prize for his discovery of HPV. Fast forward to the coronavirus. Those devising strategies to address the so-called “vaccine hesitancy” among some people of African descent and other marginalized groups are well advised to get schooled on the Tuskegee debacle and the HeLa cells “harvest.”
Weary but determined to end my monthly misery, I pursued a variety of recommended treatments for my menstrual cramps: anti-inflammatory drugs, massage, nutrition counselling, increased exercise, Chinese herbs and acupuncture. Ballantine’s Scotch replaced Harveys Bristol Cream.
The mid-1980s found me in northern California where I hit a wall with the pain. Having started mental health counselling for other matters, I one day arrived for an appointment when the torment of my cramps was still fresh on my mind. I immediately told my therapist that it was pointless for me to continue counselling until my physical health problem was resolved.
“My period is controlling my life,” I told her, detailing the rising tally of lost work days, postponed travel plans and canceled social outings wrought by my paralyzing cramps.
She wrote a telephone number on a piece of paper. “Call this doctor,” she said. “I think she can help.”
And so I scheduled a consult with the recommended internist who, having determined that I had symptoms of endometriosis, arranged a series of diagnostic procedures that confirmed same. After my long slog through several physicians — none of whom had ever mentioned the disease — I was stunned by the doctor’s rapid approach. The common denominator between the therapist and the internist? Both were Black women.
As for treatment, the internist referred me to an obstetrician/gynaecologist (white, feminist) who, in an effort to shrink my endometrial adhesions, prescribed a time-limited hormonal drug regimen that ushered me to a false state of menopause. The medication also rounded my face into a likeness of boxer Mike Tyson. I didn’t care.
For I cannot overstate the psychological benefit of not having a period. The TKO (“technical knock-out”) from the pain immediately eased the anxiety and depression that had overtaken me with the onset of each menstrual cycle. I felt freed.
My hellish periods recurred after I stopped taking the medication (as had been the plan) and I plunged into despair; the return of my “normal” visage notwithstanding.
Ever supportive, the Ob/gyn referred me to one of her colleagues. By then I was in my mid-30s. Reminder: the sledge hammer/red-hot poker scenario started when I was 19.
I arrived for my first appointment with Ob/gyn #2. There, I was greeted by a white, male physician whose office was decorated with dozens of African fertility dolls. Commonplace throughout Africa, the carved wooden figures are believed to induce pregnancy and insure the safe delivery of a child.
During a 1970s trip to Ghana, I’d noted the fertility dolls in many locales. But I’d not expected to encounter a resplendent display of the sculptures in the tony office of a white doctor. I felt immediately welcomed.
After I was seated, Ob/gyn #2 said that he’d reviewed my (copious) medical records. He then whipped off his reading glasses and declared: “Ms. White, you’ve suffered enough.”
Still bedazzled by the fertility dolls, I was only half-listening when he described a procedure that, he ventured, could possibly end my menstrual cramps — laser laparoscopy. The next thing I knew, he was thumbing the pages of an appointment book (this before computers). He then looked up at me and said: “How about next Tuesday?”
As with the internist, I was floored by the physician’s “can-do” attitude. I nodded my head in agreement. And that was that.
In the brief interim before my surgery, I decided I wanted to visit the Hearst Castle at San Simeon, outside of San Francisco. The opulent residence of newspaper mogul William Randolph Hearst (1863-1951) was opened for public tours in 1958.
My desire to visit the estate was fuelled by fears that I might not survive the surgery. Psychologically, I’d cast the trip as “compensation” for the many years my menstrual pain had been dismissed. If I died on the operating table, I wanted to have spent my last days in the lap of luxury. “Like a wealthy white woman,” I thought, to myself.
As I toured the palatial estate, I imagined hobnobbing with a frequent Hearst Castle guest, Marie Dressler (1868-1934). Angered by the racism she’d witnessed in the US, the Canadian-born actress left a substantive bequest to her household help, Mamie and Jerry Cox, both of African descent. Honouring Dressler’s final wish, the married couple used the funds (about $1 million today) to open lodging for Black travellers in the Jim Crow south.
See the movie Green Book for a portrait of the indignities Blacks needing public accommodations once endured in Dixie.
In December 1989, I was admitted to hospital where Ob/gyn #2, noting “diffuse endometriosis,” excised adhesions in my bladder, rectum, uterosacral ligaments, fallopian tubes and ovaries.
I recovered well and never again suffered debilitating menstrual cramps. During the single post-operative appointment, the doctor “screened” for me a video of the procedure. His triumphant smile stands as my lasting impression of him.
Nearly three decades after my surgery, I was thrilled to discover that an internationally renowned endometriosis expert was to deliver a lecture in Halifax. I re-arranged my schedule to attend.
Having arrived early, I introduced myself to her as a former sufferer of the disease and shared a bit about the physician who’d successfully treated me and the solace I’d found in his African fertility dolls. She looked shaken and quickly said that her research was “more scientific.”
Indeed. In a PowerPoint presentation, the speaker reeled off a stream of mind-numbing statistics about the genetic testing she was conducting on women who’ve undergone treatment for endometriosis.
She further noted that the study included “several hundred women of European ancestry.” “We wanted to avoid genetic variations in the research group,” she said, with a sheepish glance toward me, the only Black person in the room of about thirty.
As a counter, I hummed to myself the gospel tune “Climbing Higher Mountains” (as belted out by Aretha Franklin): “I’m going up the rough side of the mountain, trying to get home.”
Before my departure, I also claimed my voice by telling the group about the pivotal role Black women health care providers had played in my endometriosis victory. For in the absence of their compassionate care, concern, and action, I might not have ever connected with the other healers who, in turn, eradicated my pain.
Packing up her PowerPoint paraphernalia, the lecturer smiled (wanly) after my remarks. She then suggested that I Google her “to keep in touch,” and walked out the door.
Interestingly, I’d noticed, while speaking, the widening eyes of several women who quickly gathered around me after “Ms. Genetic Testing” left. Turns out they were mental health practitioners who’d attended the presentation hoping to learn more about the psychological impact of menstrual pain to better support their clients.
Noting the inspiration they’d found in my comments, they echoed my thoughts about the need for more health care providers of colour in Nova Scotia. They also pledged to become even stronger advocates for the women they counselled.
As it happened, the lecture by the big-time researcher from abroad was held in a board room at the IWK Health Centre. Again, I cheer media reports about the facility’s forthcoming clinic. March is endometriosis awareness month.
And another thing. Nearly 50 years after upchucking a dose of Tetracycline, I’ve never been diagnosed with gonorrhoea or any other STD. Booyah!
The author of Alice Walker: A Life, Evelyn C. White is a freelance writer in Halifax.