The search for a cure for endometriosis

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For centuries, physicians had struggled with repairing vesicovaginal fistulas, a common 19th-century complication of childbirth, where a hole develops between the uterus and bladder, causing urine to leak into the vaginal cavity. It was painful and regarded as untreatable, and especially affected enslaved women who survived a difficult and traumatic birth. Seeking to devise a cure, in 1845 Sims began experimenting on slaves. At least ten women were experimented on, but only three are named in Sims’s case records: Anarcha, Lucy and Betsey. None received anaesthetic.

As historian Deirdre Cooper Owens argues, black women’s bodies were regarded as hypersexual and capable of withstanding incredible pain. Sims’s numerous experiments caused immense agony to these women. He eventually perfected a technique for vesicovaginal fistula and developed a vaginal speculum to aid the treatments. In 1852, after announcing his technique, Sims moved to New York, where he founded a hospital for women.

Gynaecology thus became a surgical speciality. Though other vulnerable women suffered medical injustice in New York during Sims’s time – including poor Irish women in almshouses and prisons – even today it is predominantly black women “who are still forced to confront the violent assumptions of Sims and his contemporaries” at every doctor’s visit, as Ayah Nuriddin argues.

Pain is politicised, dividing people along class and race lines. It is a phenomenon in which racial bias has deeply impacted patient care in North America, where black women and indigenous women face disproportionately high rates of pregnancy-related complications or death because their bodies are perceived as being able to withstand higher rates of pain and, hence, suffering. In the UK, too, a recent report has shown that black women are five times more likely to die compared to white women during pregnancy or the weeks after birth.

Hormones, surgery and side effects

There is no cure for endometriosis.

From the 1980s, diagnoses of endometriosis have increased rapidly. What was once perceived to be a rare disease is now common, afflicting up to 20 per cent of all women. Just as a surgical procedure – laparoscopy – is necessary to diagnose the disease, so too did the knife become the solution to remove lesions and to repair scarring.

Treatment is largely about minimising and managing symptoms, often starting with hormone therapy. Birth-control pills, suppression hormones or high doses of synthetic androgens are prescribed to lower oestrogen levels and reduce pain. These create an artificial menopause in the hope of shrinking endometrial tissues, but often cause severe side effects: weight gain, lethargy, mood changes, depression, nausea, hot flushes, sweats, decreased libido, muscular pain, vaginal dryness, thinning of the bones, insomnia, irreversible liver damage, abnormal bleeding and breast tenderness, among others. ‘Add-back therapy’, in which small amounts of oestrogen and/or progesterone are prescribed, can be helpful in lessening side effects.

Hormonal treatment only masks the symptoms and does not treat the disease. At the very least, it is a stopgap until surgery to remove endometrial lesions, scar tissue or adenomyomas (benign tumours composed of muscle and endometrial tissue). But all these treatments are temporary measures.

Even if a patient manages to wrangle though medics’ pain bias, receive a diagnosis of endometriosis, and go through the roster of hormone therapy and surgery, it’s highly probable the disease will resurface.

For some women, radical surgery is necessary. Hysterectomy, double adnexectomy (removal of the fallopian tubes) and oophorectomy (removal of the ovaries) all pose their own challenges. They also result in infertility, an issue not without controversy, given the cultural emphasis on women’s reproductive capacities. Actress Lena Dunham, for instance, made headlines for her decision to have a hysterectomy at the age of 31: “With pain like this, I will never be able to be anyone’s mother. Even if I could get pregnant, there’s nothing I can offer.”

Doctors’ loyalty to fertility

When science writer Abby Norman had her first surgery to drain ‘chocolate cysts’, she assumed her displaced ovary and twisted fallopian tube would also be removed to cure her disease and improve her sexual experiences. When she woke up, she discovered only the cyst had been removed, for her surgeon wanted to preserve Norman’s fertility – though Norman had never expressed any desire for motherhood. Despite women’s constant advocacy to eliminate the pain bias, medicine still retains “loyalty to fertility above all”.

I never had my initial surgery. Once the biopsy results confirmed my mass was not cancerous, I was sent home with another regimen of painkillers to wait another month until I could see a gynaecologist specialising in endometriosis. The mass had wrapped itself around my bowels, she explained. Shrinking it with hormones would prevent a risky bowel resection surgery. For six months, my body fought against the hormone therapy as I withered to a shadow of my former self.

Then I had my surgery to remove the mass and endometrial lesions, but I left the hospital with the awareness that I had to live with the reality of the pain returning – possibly even worse than ever – and go through the process all over again.