I was brought up in a conservative Indian family in the UK. I was diagnosed with endometriosis at 21 after years of painful periods and heavy bleeding. I was fortunate in some ways; my mother had endometriosis, and was familiar with the basics of the disease. Despite this, there was still an unwillingness to discuss endometriosis or menstrual health beyond the tight remits of either doctors or women in the family. This led to misconceptions, even by my mother, around appropriate levels of pain management and treatment.
The cultural setting in which I lived meant that there was no real conversation about pain and the difficulties of managing severe symptoms and bleeding throughout my school and teenage life. Many of the treatments offered to young women, including oral contraceptives, would have been seen as inappropriate for a young woman. Pain and bleeding were just seen as issues which women have to deal with.
There was also no conversation at all about the effects of endometriosis on sexual health and relationships. Sex was certainly something we never discussed, and therefore how the endometriosis would affect my relationships and sexual health were also never discussed. I only discovered these repercussions much later, on my own.
This was also evident with older female relations who suffered from gynaecological diseases. They never spoke to their families or husbands about their symptoms as they were just too personal and intimate to be revealed. The culture of shame and embarrassment around the female body plays into this reluctance and this is then passed down through mothers to their daughters. Education can play a vital part, which is why the Australian Coalition of Endometriosis is calling for menstrual health to be taught in schools.
Endometriosis affects 1 in 10 women worldwide. It’s often a painful and debilitating condition which occurs when material similar to the endometrium (lining of the womb) grows in other parts of the body. Endometriosis deposits can be found within the pelvic region, and remarkably, throughout the body and major organs.
Infertility, in particular, can be misunderstood and dramatically affect the position and standing of a woman in her community and even within her home.
Women still face lengthy delays in diagnosis, varying responses and approaches for effective treatment and often uncompromising advice around fertility. This is partly due to the historical lack of research which has impeded strong patient outcomes, but also the strong social and cultural narrative around women’s health particularly when crossed with sex and reproduction. Many people are still squeamish or embarrassed to openly discuss menstrual health, sexual wellbeing and chronic pain – particularly when they intersect with fertility.
This can be the case for women from culturally and linguistically diverse (CALD) backgrounds, where social and cultural thinking prevent open and honest discussion about women’s health. Infertility, in particular, can be misunderstood and dramatically affect the position and standing of a woman in her community and even within her home.
Women in Australia, from diverse backgrounds, are still facing three major challenges in accessing information and prompt treatment for endometriosis.
First, is the basic lack of availability of information in their language. Providing information in the right language in a private and safe environment is critical. Knowing where and how to provide access to information can be a complex process especially if compounded by other social inhibitions and taboos. Health providers are doing a better job at accessing vulnerable and high-risk communities, but there is a particular sensitivity about providing information directly to women without involving their families or partners. There is also a barrier to providing information around sexual and reproductive health to girls in schools in a way which does not infringe on cultural values.
In many cultures, gynaecological health carries stigma and shame for the woman and girls in need of support.
Here is the second challenge. In many cultures, gynaecological health carries stigma and shame for the woman and girls in need of support. A lack of frank conversation about female health and not only inhibits access to treatment, it also warps the perception of gynaecological diseases, so that girls and young women, are not able to speak about their symptoms for risk of stigma and embarrassment. If their self worth is brought down by opening up about their symptoms, they are even less likely to do so.
This creates the biggest hurdle in accessing treatment - a lack of awareness about what healthy and normal menstruation, sex and fertility really are. If we don’t talk to young girls and young women about what’s healthy for the female body, they won’t know how to evaluate their symptoms in a meaningful way and probably won’t seek help. Providing information on endometriosis is certainly one way of raising awareness, but this must sit in a wider context of encouraging free conversation around sensitive topics.
Conversations about endometriosis are never easy in any language. This disease has enormous emotional and psychological effects which play into the way society perceives us as women. But these are conversations we have to keep having – and we need to try harder to include women from all backgrounds in that conversation.
Balveen Ajimal is the Queensland ambassador for Endometriosis Australia.
Insight talks about endometriosis, the disease affecting many Australian women that’s been ignored and misunderstood. Tuesday, November 20, 8:30pm on SBS and SBS On Demand.