Pregnancy often advised for endometriosis management, despite lack of evidence
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Key takeaways:
- More than 50% of women surveyed reported being advised to become pregnant to manage endometriosis.
- Of these, 89.4% reported the advice came from health care professionals.
In a survey of women with endometriosis, more than half reported being advised to become pregnant to manage the disease, often by health care providers, despite little supporting evidence, researchers reported.
“Misinformation on endometriosis treatment has been reported in the literature and is perpetuated in practice, among lay people and online. One of these fallacies is that pregnancy is a cure for endometriosis,” Diksha Sirohi, MPH, PhD, from the Robinson Research Institute at Adelaide Medical School at the University of Adelaide, Australia, and colleagues wrote. “Similar findings have been reported in other studies, showcasing that receiving this advice is common and pervasive within the community. However, a recent systematic review indicates that there is no evidence that pregnancy can reduce the size or number of endometriotic lesions and concludes that evidence for an association between pregnancy and endometriosis symptoms is controversial and strongly biased.”
Sirohi and colleagues conducted a self-reported, community-based, cross-sectional online survey, the Endometriosis Patient Experience Survey, of 3,347 women who were medically diagnosed with endometriosis. The survey had 65 items and included a mix of fixed-response and open-ended questions regarding demographics, diagnosis, surgical history, advice provided about endometriosis and outcomes stemming from this advice.
Overall, 1,892 women surveyed (56.5%) reported receiving advice to get pregnant or have a baby for endometriosis management or treatment. Of these, 89.4% reported receiving such advice from health care professionals, 24.5% from family members, 22% from a friend, 15.7% from an acquaintance with endometriosis, 2% from unknown sources and 1.9% from other sources.
The three main reasons respondents cited for health care professionals advising pregnancy were as a treatment for endometriosis (68.2%), because endometriosis can impact fertility (56.1%) and as a cure for endometriosis (36.8%).
“Patient-centric approaches and health care professionals’ education are crucial for positive patient experiences,” the researchers wrote. “Doctor-patient communication is likely to improve if patients are asked about their fertility-related preferences, if their health care plans are co-developed with their needs prioritized and if evidence-based advice is given for the management of endometriosis.”
Perspective
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Don't ever tell a patient to get pregnant to treat their endometriosis. Pregnancy is not a treatment for endometriosis. There is a small subset of women whom, for reasons we don't understand, symptoms will improve if they're pregnant, but endometriosis is also one of the leading causes of infertility.
I am a relatively young physician and I had excellent, academically driven medical training. I did my medical school where I currently work at the University of Pittsburgh, where we have top of the line endometriosis care. Then I did my residency at Johns Hopkins, and then my fellowship at Georgetown. Both of those places had world class endometriosis care. So, I have never heard a provider say that [pregnancy treats endometriosis], and anyone that I have trained with would know that that's not a thing.
I'm wondering what the relative ages of the providers who are advising this are. Most young OB/GYNs are female, which isn’t to say that young male OB/GYNs wouldn’t also know this, but we all know that getting pregnant to improve endometriosis is terrible advice. I don't know anyone that would say that. I don't know where that 50% is coming from. I would be willing to bet that this advice comes from health care providers who are soon to retire or doctors who are not up to date on medicine. I don't know what to say about it, but that's a stunning number.
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