For many years, women with endometriosis were ignored and stigmatised. It was labelled “the career women’s disease”, afflicting those who supposedly were too selfish to have their babies young. Imagine the anger and distress this stigma caused, among women who would have loved to have children … if the condition itself didn’t hinder them. The myth was that endometriosis did not affect women until they were in their 30s, which was tough if, like me, you had your first symptoms with your first period.
My own battle with the disorder seems to have occupied most of my life. Period pains were normal, I was told, and if I seemed to suffer more than most, it must be because I had a “low pain threshold”. At 19, I began actively seeking a diagnosis. I was 27 when I received it, and by that stage, major surgery was the only answer. Abruptly I lost my fertility and, in some ways, lost myself. Though I was told I was cured, the condition recurred, and drug treatment led to huge weight gain. Thyroid failure followed and the devastating chain of consequences pursues me to this day. Anything I have achieved has been in the teeth of the disease.
It need not be like this. My story is extreme and points to the need for early diagnosis. Women of any age need the courage to come forward and ask for help, and health practitioners, teachers and parents need to listen. The condition is not easy to diagnose, because its effects are so diverse and so individual, and because the intensity of pain does not necessarily relate to the severity of the condition. Each case needs to be handled individually, and the patient may have to make some difficult choices.
It is important at every stage to ask questions, and to seek second opinions if necessary. If your doctor sees you as a statistic, or a file to be processed, walk away; you are too precious for that. Your strengths and resources, as well as your pains, are yours alone. Curious, compassionate doctors are out there, in increasing numbers. You may need to be persistent, but there are many avenues to healing, and often a happy outcome.
Exhortations to eat up your greens and go to the gym can seem insulting to women struggling to keep food inside them or get to work on time, and it is hard even for sensitive people, if their own health is sound, to imagine the daily botches and compromises that people in pain make to keep themselves going. But when it is possible, we should treat our body as a healthy body and respect it; and on good days, invest in it, build its resources.
If you exercise, put some thought into finding an activity you like. And when looking for help, be open-minded. Alternative practitioners are often good listeners and highly empathetic. From my own experience I know that, if you have been stressed by rushed consultations and tick-box methods, simply to speak and be heard is beneficial.
Herbal medicine harnesses the knowledge of countless generations gone before us. Reflexology, autogenic training – a range of therapies can help with with pain control, with the side effects of drug treatment, and with self-image.
Women with endometriosis often lose their confidence, and carry a burden of sadness that longs for release. Kind people and safe spaces are what we all need. There is no one way of experiencing this condition, and no one way of coping with it. Whatever brings comfort is valid. Whatever works is to be valued.
I would like to believe cases like mine could not occur nowadays. But I fear they will, until there is official awareness of the cost of ignoring this condition – the cost to sufferers, their families, the wider economic community.
Endometriosis is not easy to talk about. It cannot be explained in a phrase. It doesn’t show on the outside. It touches on areas of women’s experience we are sometimes ashamed to speak of. But we must find a way to voice our needs, if we are to command resources for research, if we are to understand and overcome endometriosis, and find a way of coping till we are free from it.
• This is an edited extract from the foreword of Coping with Endometriosis by Dr Zara Aziz and Jill Eckersley, to be published by Sheldon Press in November and available in Australia and New Zealand from Exisle Publishing
