Why women deserve to be treated seriously when they are in pain

“First, do no harm” has long been a guiding principle of medicine. What if instead it was, “first, listen to the patient”?

For Lilli Staff, it might have saved years of pain. When she was 17, she was told her debilitating pelvic pain was normal by several gynaecologists on the NSW South Coast. Two years later, a Sydney gynaecologist diagnosed her with the most severe form of endometriosis and polycystic ovary syndrome.

Lilli Staff was told her debilitating pelvic pain was normal.Credit: Louise Kennerley

It is yet another example of a woman who has been dismissed, belittled, misdiagnosed or gas-lit to come to light since The Sydney Morning Herald and The Age launched an investigation into medical misogyny.

As health editor Kate Aubusson reveals today, there are promising signs of a treatment for Pelvic Congestion Syndrome, which is among the many under-researched potential contributors to chronic pelvic pain. There are studies that suggest the syndrome, characterised by damage to the major veins that run through the pelvis, may contribute to as many as 30 or 40 per cent of cases where no other cause, such as endometriosis, can be identified.

The promising treatment in question is stenting, a technique more commonly associated with repairing the arteries of cardiovascular patients. In a recent study, vascular surgeon Associate Professor Laurencia Villalba followed 113 women (aged 17 to 88) with blocked pelvic veins who underwent stenting after suffering severe pelvic pain, some for up to 25 years.

Villalba and her co-author, Associate Professor Theresa Larkin, found that after the procedure, almost every woman (all but two patients) reported that her pain had lessened significantly six to 12 months later, and most (73 per cent) reported that their pain had disappeared completely. This is an encouraging outcome, although it must be said much more study is needed. In the words of Associate Professor Sarah Aitken, deputy chair of the Royal Australasian College of Surgeons’ (RACS) Vascular Board, “this is still a big area of unprioritised research”.

Earlier in the week, Aubusson also reported that a world-first endometriosis institute will be established at the University of NSW. It has come about courtesy of the largest known donation in the world towards researching the condition whereby tissue similar to the lining of the uterus, the endometrium, grows in other parts of the body. The Ainsworth family, NSW pokies billionaires, committed the funds to establish the Ainsworth Endometriosis Research Institute (AERI), which has been heralded as a game-changer after a 30-year lag in science investment.

The two stories highlight how important it is for doctors, other medical professionals and researchers to take women seriously when they say they are in pain. The advances being made are welcome, of course, and it is important not to rush into adopting treatments for poorly understood conditions without careful ongoing study. But there is a glaring lack of knowledge and research in an area that has been neglected for far too long.

Listening to women will go a long way towards doing them no harm.

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