Why are doctors still telling women with endometriosis to become pregnant?

One of the first times endometriosis was mentioned in Australian media was in a 1949 article in the Catholic Weekly. Doctors in the piece prescribed pregnancy as a treatment for “one of the most crippling of female diseases”, which they claimed was suffered by women who didn’t have kids young enough or who used contraception.

Pregnancy is not a cure for the condition, but seven decades later patients with endometriosis are still being told it is, according to new research, published in BMC Women’s Health.

Despite a lack of evidence, doctors are still recommending pregnancy as a treatment for endometriosis.Credit: Aresna Villanueva/iStock

In the study, conducted by researchers from University of Adelaide, University of Sydney and not-for-profit EndoActive, more than half of the 3000 medically diagnosed patients surveyed – some as young as 13 – said they had been advised to fall pregnant to manage or treat endometriosis. This advice was mainly dished out by healthcare professionals, including gynaecologists and GPs. To me, there is a cruel irony in insisting people procreate to briefly treat a condition that itself can cause devastating infertility.

When you have endometriosis, tissue similar to the lining of the uterus grows beyond it – into the lining of the pelvic cavity, on the fallopian tubes and ovaries and even onto neighbouring organs like the bladder.

This buildup of abnormal tissue outside the uterus can cause inflammation, scarring and debilitating symptoms including severe pain, often during menstruation. While not having a menstrual cycle (which happens in pregnancy) can ease some pain for some people, anyone with a uterus will tell you there are plenty of ways to dodge a period for a few months without creating an entire human.

For many people, myself included, the pain can occur regardless of whether you’re menstruating. I have been known to silently bargain with a higher being to trade my pain for other burdens, but even on the days when I can’t walk I wouldn’t have promised parenthood.

The European Society for Human Reproduction Embryology (ESHRE) Guidelines for Management of Endometriosis state that patients should not be advised to become pregnant with the sole purpose of treating endometriosis, as pregnancy does not always lead to improvement of symptoms or reduction of disease progression.

So why are Australian doctors still telling women to do so, when this advice is not only medically irresponsible, but reinforces a set of sinister and sexist myths?

Hippocrates thought many physical ailments in women were caused by their uteruses moving around their bodies like restless animals, searching for moisture. “The triad of marriage, intercourse, and pregnancy was the ultimate treatment for the semen-hungry womb,” author Terri Kapsalis wrote of the thinking at the time. “The uterus was a troublemaker and was best sated when pregnant.”

In ancient Greece, magicians prescribed “hysterical” women amulets to heal their wandering wombs. By the 19th century, hysteria (derived from the Greek hysteria, meaning womb) was thought to be a psychological, rather than purely physical, disease. In 1873, a Harvard professor wrote that women should not pursue higher education because they might become “irritable and infertile” if blood travelled to their brains instead of nourishing their uteruses.

Indeed, that 1949 Catholic Weekly article warned that women with careers were more susceptible to the disease. The message lingers in treatment rooms today: if the womb isn’t being used for its God-given purpose, it wreaks havoc.

This stubborn sentiment is not only offensive but inadequate. It is astounding that in so many years we don’t have decent treatment options for a disease that impacts around 10 per cent of women and girls, according to the World Health Organisation.

I didn’t get my diagnosis because my pain was taken seriously but because I was rushed into an emergency surgery for a burst ovarian cyst. While they drained the blood, the doctors noticed the endometriosis creeping beyond my uterus towards my bowel. It takes people an average of eight years to get a diagnosis because of the lack of research and awareness, but also because of the stubborn notion that some level of pain is a prerequisite of owning a uterus.

There is a cruel irony in insisting people procreate to briefly treat a condition that itself can cause devastating infertility.

As Angelina Chapin wrote in The Cut, patients seeking care often have their worst endometriosis symptoms neglected until it comes time to procreate and the disease is taken seriously as an obstacle to conception. “My pain, divorced from the context of motherhood, doesn’t seem to matter in a doctor’s office,” she wrote.

Endometriosis can bring menstrual pain, pain during sex, pain with bowel movements or urination and pain while doing nothing at all. It can lead to gastrointestinal issues, fatigue, excessive bleeding and bloating. It can create bands of fibrous tissue, which fuse organs together. It can impact your mental health and relationships and destabilise your career. It can leave you with thousands of dollars in medical bills.

Symptoms can be managed, often unsatisfactorily, with surgery, hormonal medications and physiotherapy, but there is currently no known cure for endometriosis.

Sometimes I wonder whether the condition would still upend millions of lives if the uterus, fallopian tubes and ovaries had been researched as thoroughly and dispassionately as other organs have – free from sexist mythology and disconnected from their reproductive capacities.

Authors of the study released last week wrote that doctors needed to provide “evidence-based information” and yet, after 4000 years, we still have a way to go.

Gina Rushton is the author of The Most Important Job In The World (Pan Macmillan).

Make the most of your health, relationships, fitness and nutrition with our Live Well newsletter. Get it in your inbox every Monday.