This is what women with endometriosis want from their doctors



Helping women with endometriosis as a doctor can be a tricky thing. Although awareness and research has increased in recent years, there is still so much we do not know about endometriosis and how to assist those who live with it. Even so, there are many ways medical and health professionals can help ease the burden of this disease for women.

My colleagues and I recently published a paper that captured a diverse range of women’s perspectives on receiving endometriosis care from doctors (usually GPs and gynaecologists). Below are the things these women told us they need and want.

Above all, women want to be listened to and believed.

A healthcare system designed for acute health problems produces constraints that make it difficult to listen to all patients’ stories. And we live in a society where women are often silenced or ignored; doctors are human beings and thus not immune to sociocultural influences. Here are some specific communication skills women valued:
  • Being asked about their ‘story.’ For example, a participant in our study reported her doctor saying, “I want to hear everything. Tell me your story from the beginning.” [Tip: A GP told me that she offers to her patients to complete a patient diary at home to facilitate this process within the time constraints of a standard GP consultation.]
  • Doctors who listened attentively through maintaining eye contact and being present (e.g. not note taking while the woman was speaking).
  • Their doctor saying that they believed them, for example, when reporting symptoms (e.g. pain returning after surgery) and when stating they do not want to have children.
Ultimately, women wanted their doctors to “reach out as one human being to another,” as the medical sociologist, Arthur Frank, once said.

Women want to feel safe from the history of hysteria repeating.

It was historically not so long ago that (predominantly male) doctors labelled many female patients as ‘crazy’ (or worse) and had them medicated and/or institutionalised against their will (see here for further reading). This was usually when women exhibited symptoms for which there was little available medical understanding—as is still the case for endometriosis—or when they exhibited behaviour that was socially deemed inappropriate for women. This history sat heavily on the shoulders of women every time they entered a doctor’s office or hospital. The diverse women in our study feared having their symptoms dismissed purely as psychosomatic expressions of things such as their career choice and relationship status. Some women did experience this.

Women want their knowledge of their bodies to be recognised and incorporated.

A woman has lived in her body her whole life. Women perceived the experiential knowledge that comes with this to be valuable. They wanted their doctors to recognise this. They wanted to knit together this knowledge with the doctor’s medical and clinical knowledge to produce a picture specific to her. This coming together of knowledge may be particularly useful when current medical understanding of endometriosis has been exhausted (i.e. when a woman has tried all available treatment options with no relief, as about 50% or more will). [Tip: This book and this article may be helpful to learn more about this difficult but useful skill.]

Women want their doctors to be honest about what they do not know.

Most women did not expect doctors to know everything about endometriosis and their bodies. They appreciated doctors who explicitly stated when they did not know something, and then looked for ‘the answer’ or referred to someone with more knowledge/experience. With so little medically known about endometriosis there will be a lot that a doctor cannot give an answer too. This reduces with every new study published but it is a slow journey. Medicine is both an art and a science. While the science catches up, it is the art of reaching out to another human that doctors must now draw upon to support women with endometriosis.

As I did in our paper, I will conclude with the words of our participant, Emerald:

If … those messages can get through to GPs and surgeons, so that women are treated as partners in their health, instead of patients that have things done to them, that would be a good thing.

What practices have you found useful to assist women with managing their endometriosis? Join the conversation on Twitter, Instagram or LinkedIn.

Kate