StoriesPart of Painful realities
Part5

The search for a cure for endometriosis

Surgery is often necessary to discover the cause of gynaecological pain. As writer Jalpreet Virdi contemplates what her surgeon will find, she explores how surgery became one of the gynaecologist’s specialisms.

Words by Jaipreet Virdi and artwork by Anne Howeson

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Pencil artwork drawn over an engraving of a photograph from the early 1900s which depicts a vaginal hysterectomy. The patient is lying on an operating table, her legs stirrups, covered in a white cloth. She is surrounded by 19 people who are either involved in the operation or just observing. The group is made up of mainly men. The whole scene is black and white apart from the gowns of the surgeons and observers which are tinted red.
Woman in Surgery. © Anne Howeson.

An ambulance took me to another hospital so I could meet the gynaecologist-oncologist who would operate on me. I had yet to receive a diagnosis – of endometriosis, cancer or autoimmune disorder – but surgery was being planned.

I sat in a wheelchair, my arm connected to a painkilling hydromorphone drip, and listened to the surgeon go over the laparoscopy. I was told they wouldn’t know how bad the situation was until they examined me under the knife, but it was highly probable a full removal of my uterus, ovaries and fallopian tubes was necessary.

There was no guarantee, however, that the surgery would lessen or eliminate my pain. Nor did I receive an explanation of why the removal of my organs was necessary. After all, hysterectomy cannot cure endometriosis any better than it could cure hysteria.

Female slaves as experimental subjects

Although records of minor operations exist from ancient times, gynaecology was essentially a non-surgical discipline until the 1850s. The transformation perhaps began with American physician J Marion Sims, who built his reputation among Southern plantation owners by treating their slaves. Sims had little training in gynaecology, but since slaveholders placed great emphasis on enslaved women’s ability to give birth and continue the labour force, he built an eight-person hospital for treating slaves.

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.

This device is a hysterotome or metrotome, and is used to amputate the cervix during a hysterectomy. Its invention was credited to James Marion Sims without reference to the enslaved women that he experimented on in order to develop such tools.

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.

Even if a patient goes through the roster of hormone therapy and surgery, it’s highly probable the disease will resurface.

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.

This illustration from a 1940s text shows endometrial implants on the ovary on the left and the small intestine on the right. The surgeon writer notes that they did not excise all of the implants during this operation.

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.

About the contributors

Photograph of Jaipreet Virdi

Jaipreet Virdi

Author
Jaipreet Virdi’s website

Dr Jaipreet Virdi is a historian of medicine and disability based at the University of Delaware. Her first book, ‘Hearing Happiness: Deafness Cures in History’ will be available in early 2020. She is currently working on her next book, ‘An Invisible Epidemic: The History of Endometriosis’.

Photograph of Anne Howeson

Anne Howeson

Artist
Anne Howeson’s website

Anne Howeson develops projects concerning place, time and communities. She is a Jerwood Drawing Prize winner with drawings in the collection of the Museum of London, the Guardian News and Media, St George’s Hospital and Imperial College London. She was shortlisted in 2014 for the Derwent Art Prize and the National Open Art Award, and in 2017 for the Ruskin Prize. She has twice been an invited artist with ING Discerning Eye. As a tutor at the Royal College of Art she promotes drawing in all its forms – through process, outcome and as a way of thinking.