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Despite being in her 20s, newly graduated from a law degree, and at a point in her life when it was “definitely not the right time to have a child,” that’s exactly the advice the gynaecologist treating Suzie Wnukowska-Mtonga for endometriosis gave her.
“My mum was at the appointment with me, and when the gynaecologist told me getting pregnant would help treat my symptoms, Mum said, ‘If you have a child I’d be happy to look after them,’”Wnukowska-Mtonga said. “But the timing wasn’t right, my now ex-boyfriend was living overseas, and I wanted to start my career.”
Endometriosis is a chronic disease associated with severe, life-impacting pain due to tissue similar to the lining of the uterus growing outside the uterus, leading to lesions, inflammation and scar tissue.
It is common, affecting at least one in nine girls, women and those assigned female at birth.
There is no cure.
At the time, Wnukowska-Mtong had also been reading advice from endometriosis support groups online where many people shared that pregnancy had not helped with their symptoms.
She opted to work with another specialist to manage her symptoms instead by getting the Mirena intrauterine device (IUD), taking oral contraceptives, and using painkillers when needed.
While these treatments don’t help all endometriosis patients, they did provide Wnukowska-Mtong with relief, though she still experienced symptom flare-ups at times.
And at those times, “there was sometimes this thought at the back of my head that maybe the pain would go away if I had a baby”.
A study published in the medical journal BMC Women’s Health on Tuesday found almost 90% of endometriosis patients surveyed were advised by their health professional that pregnancy reduces endometriotic lesions or symptoms. That is despite the fact there is a lack of evidence to support that claim.
The study also found of 3,347 endometriosis patients who answered a patient experience survey, 1,892 reported that they were told to have a baby to manage or treat endometriosis.
The study, which involved researchers from the University of Adelaide, the University of Sydney and the endometriosis charity EndoActive, found 36% of the patients were told pregnancy would cure their condition.
“Profound and often negative patient impacts” resulted from this advice, the study found.
“Impacts ranged from planning for pregnancy, hastening the making of major life decisions, eroding trust with healthcare professionals, worsening mental health and straining relationships,” the study concluded.
Prof Louise Hull, a fertility expert from the University of Adelaide’s Robinson Research Institute and co-author of the study said while one-third of the respondents felt the advice was appropriate given their situation at the time, many other women felt they were too young to have a baby and felt stressed and pressured.
“Asking patients about their fertility preferences, while also providing evidence-based advice on the treatment and management of the condition is crucial to improve patient experiences and outcomes,” Hull said.
One patient who responded to the survey said when she was given the pregnancy advice, “I was 13”. “It wasn’t appropriate.”
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.
Australian not-for-profit women’s health organisation, Jean Hailes, also advises pregnancy is not a cure.
The chief executive of Jean Hailes, Dr Sarah White, told Guardian Australia: “It is unbelievable that this outdated pseudoscience – that having a baby ‘cures’ endometriosis – is still being fed to women and girls by health professionals.”
“Telling a young woman who is desperate to escape the pain of endometriosis that she ‘should’ have a baby is beyond irresponsible, it’s frankly just awful,” she said.
She said the study was important for understanding the gaps in health professionals’ knowledge, “and the sadly sometimes quite poor care being provided for women’s reproductive health issues”.
Sylvia Freedman, the co-founder of EndoActive and a co-author of the study, said it was important to provide quality education about treating endometriosis to healthcare professionals.
“I think sometimes gynaecologist/obstetricians that treat women for endometriosis have a focus on delivering babies, and not treating endometriosis,” she said.
“Many of these doctors are seeing women who are desperate to have a baby and who are very focused on their fertility, and this may be influencing their advice to endometriosis patients, who are often actually there to get pain management and evidence-based advice.”
Wnukowska-Mtonga said she finds it “really startling” that doctors are still giving the same advice to patients that she was given in her 20s.
Now 34, she and her partner had a baby once they were ready via IVF, and their child is now 18 months old. Despite the pregnancy, she still receives treatment for ongoing endometriosis pain and it did not relieve all of her symptoms.
Planning her pregnancy when it suited her allowed her to move overseas to pursue a career in human rights law and complete her masters, which she said would not have been possible if she had followed her gynaecologist’s advice to have a baby in her 20s.
“It’s a really sexist approach to treating patients that shows a lack of consideration for the individual’s situation, such as whether they’re economically able to support a baby, or psychologically able to support a baby, or whether they even want a child,” Wnukowska-Mtonga said.
“The onus should be on doctors to be up-to-date with research about what is a condition people have been raising awareness about for many years now.”
