/ 9 May 2023

Endometriosis shows up patriarchy in the medical field

A woman holds a hot water bottle to her lower abdomen while lying in bed. Many sufferers of the abdominal disease endometriosis suffer from severe symptoms and associated restrictions in everyday life. (Photo by Annette Riedl/picture alliance via Getty Images)

A dreadful, all too familiar radiating pain seeps into my dream. Now half-conscious, I am still hoping that the pain is part of the dream but, as I become aware of the blood in the bed and on my pyjamas, I steel myself to wake up and face the full wrath of my body. 

Alongside the excruciating pain, and the clean-up process that must now begin, sit embarrassment, shame and anger at myself. At least this time it has happened in the privacy of my bedroom and not during the day, when various humiliating scenarios can play out.

The pain, and all that accompanies it, has come every month since I went through puberty at the age of 12. At times, the pain and bleeding would keep me in bed for between 10 and 14 days in one cycle. Growing up with an extended family, with cousins and sisters who experienced similar agonies, meant that I did not feel alone. At 14, when the pain became paralysing, I paid my first visit to a gynaecologist.

This visit began a lifelong journey into what can only be termed experiments with reproductive health, some rash, some damaging, and many accompanied by a medical paternalism that left me feeling de-selfed. I was told that I needed to have a dilation and curettage (D&C), which is a procedure to remove tissue from inside your uterus. I was also put onto contraceptives to help regulate my menstruation cycle. Both measures did very little to alleviate my condition. I later learned that the D&C was not the correct treatment.

I muddled through high school with very high absenteeism. I was at home for at least a week a month. Along with the pain, the bleeding led to anaemia and migraines. My parents tried many doctors, alternative healers and an assortment of quacks and religious types to help me. They meant well and I was lucky to have their care and support. Many girls are just told to stop complaining and get on with it. But the doctors, including gynaecologists, told me and my family that I was being over dramatic. “She just needs …”, they often said, with a knowing look at my parents, “to get married.”

As a teenager, it was clear to me that there was a deep current of patriarchy running through the medical profession, and that it was apparent in everything, from bedside manners to informal conversation with families, as well as formal diagnosis and treatment. Later, I would discover that my experience was typical and that many girls and women are treated with very little consideration for their pain and its consequences in their lives.

The pain does not let go and, as an adult, working, being a mother and just living has been constantly interrupted by periods of ill-health. At 21, I finally got a diagnosis beyond the usual comments about growing up, getting on with it and getting married. The diagnosis was endometriosis. It came after my father and I stumbled on an article in Cosmopolitan magazine describing the symptoms — I had each one. 

We learnt that endometriosis is a chronic autoimmune gynaecological disease in which the tissue that usually lines the uterus also grows on outside of it. It can be extremely painful, cause excessive bleeding and irregular periods, and can make it hard to get pregnant. The pain experienced by endometriosis sufferers during menstruation is often worse than childbirth. Endometriosis, which can start at a person’s first menstrual period and last until menopause, is not easy to treat. 

The article provided the contact details for the newly opened endometriosis clinic at Park Lane Hospital in Johannesburg. Although I lived in Durban, I was fortunate to be able to travel to the clinic, to get a diagnosis and begin to receive treatment which was in the form of laparoscopy surgery. 

I was told that I would not be able to have children, something I was okay with at the time. Being a mother had never been an ambition. As is so often the case, the diagnosis was a relief but it didn’t stop the pain and the periods of disability violently punctuating my life. I was often on schedule six drugs for the pain and, from 21 to 28, I had 11 surgical procedures, mainly laparoscopies. 

When I turned 30, I was astounded to discover that I was pregnant and I was elated. I had received a gift I didn’t even know I wanted or needed. The pregnancy came to an end a month early with an abrupted placenta and I had a night of terror where I was left in a hospital bed, covered in blood, and with no word about my child. But my son was okay and today he is a beautiful 13-year-old, the great gift of my life.

The bleeding didn’t stop after the birth, and after six months, I had a hysterectomy. This was meant to decrease the pain and stop the bleeding. The only reason this solution was offered to me was because I had a child. Had I not had a child, I would not have been able to have the hysterectomy as many in the medical profession still think the role of women in the world is to have children. 

If you are a young woman, who is certain you don’t want a child and suffer terribly from endometriosis, a partial hysterectomy that removes your uterus and relieves you of the excessive bleeding and debilitating pain will more than likely not be an option.  

The hysterectomy dramatically reduced the pain, and for the first time since puberty, I could live a normal life. As I thought back on all the time lived in agony, I came to terms with the damage done by years of often crude and extreme healthcare interventions, and a series of doctors who thought, in the classic patriarchal trope, that the problem was that I was hysterical. 

I understood exactly what Booker Prize-winning author Hilary Mantel meant when she wrote that “the condition and attempted cures have devastated my life”. In all the years that my deeply committed father took me from doctor to doctor, I encountered exactly three who treated me with respect and took me seriously. 

When I became a professional historian, I learnt that since the birth of capital, which was accompanied by the organised murder of women deemed to be witches, advances in biomedical approaches to women’s health have only been important in so far as they have concerned reproductive health. Even this is limited to controlling the ability of women to either have children or not. Moreover, besides being deeply gendered, healthcare was, and continues to be, deeply classed and racialised in terms of both medical practices and access. 

Before 1808, enslaved women in the US were given no respite from their heavy workloads or any rest, or medical treatment, to assist during or after their pregnancy, as the view of slaveholders was that they did not need to reproduce their own labour force as they could import more slaves from Africa. 

However, after 1808, when America stopped importing slaves, there was a sudden, massive investment in the reproductive health of women to ensure there was a ready workforce. Of course, the interest in women’s reproductive health extended to their sexual and emotional lives and enslaved women were not allowed to marry, fall in love with, or share the joys of sex with men of their choice, as they and their children were seen as property with the fundamental function of being lifelong unpaid workers.

Medicine remains patriarchal today and riven with inequalities along the lines of race and class. Diseases affecting men get disproportionately more funding, with “men’s diseases” being overfunded and “women’s diseases” underfunded. Harvard Health research shows that “70% of those affected by chronic pain conditions are women, whereas 80% of pain research is conducted on males”. 

Endometriosis is radically underfunded and researched globally. One in 10 women suffers from endometriosis yet the research lags behind, with the same treatments that were used in the 1970s often being prescribed today. Many female researchers, often sufferers of endometriosis, carry out research but fail to access sufficient funding. 

Globally, over 500 million women lack access to sanitary products and adequate facilities for menstrual hygiene management. This includes access to water, privacy and sanitary products. 

According to a report by the World Bank published last year, in South Sudan, 57% of girls stay home during menstruation due to the lack of private changing rooms in school. In Kenya, 95% of girls miss one to three days of school a month and 70% of those girls reported that this affects their marks.  In South Africa, over 7 million girls do not have access to, or cannot afford to buy, sanitary products. 

Access to privacy, water, and sanitary products are the basic requirements to live in dignity, let alone deal with the various complications that arise from reproductive health issues. Endometriosis is just one — others include fibroids, polycystic ovary syndrome, ovarian torsion and ovarian cancer. 

Today, after years of relief, I am struggling with pain again, as endometrial tissue is now growing in my abdomen. This time around, I know to look for feminist doctors or those recommended by other women who have been through the washing machine of medical patriarchy. 

But we need to do more than save ourselves, as best we can. We need to agitate and organise for a feminist challenge to patriarchal medicine, one that is driven by the interests of all women, and especially those without access to private healthcare.

Dr Vashna Jagarnath is a director of Pan Africa Today and Friends of the Workers. She is also deputy general secretary of the Socialist Revolutionary Workers’ Party and a senior research associate at the Centre for Social Change at the University of Johannesburg.