Unfortunately, as I entered my forties, my periods were often accompanied by painful cramps and heavy bleeding resulting in chronic anaemia. A diagnosis of fibroids culminated in an operation to stop my bleeding.
These experiences, inspired me to create woman art photography that celebrates womanhood; especially exploring the taboos and myths surrounding that most defining experience, menstruation. Then I heard about endometriosis.
What I heard about endometriosis broke my heart. I decided to use my photography to raise awareness. ‘Life with Endometriosis’ makes endometriosis visible.
While many of the issues raised by ‘Life with Endometriosis’ are common to many chronic illnesses, women with endometriosis suffer specific prejudice, secrecy and embarrassment. Some women are shamed by society. These prejudices make discussion about endometriosis difficult.
For the last 2 years, I have listened to over 20 women describe their experiences and feelings about living with endometriosis. ‘Life with Endometriosis’ gives women with endometriosis an opportunity to express how they feel and describe the impacts on their lives. Several women have told me that being heard is very healing.
All the photographs in ‘Life with Endometriosis’ are inspired by what women with endometriosis have told me. They participate in the photography and remember how they felt, giving an authenticity to their body language and facial expression.
Many women suffer every month, some live in constant pain, yet it can take years for women to be diagnosed. I’ve heard women struggle for literally decades, the longest was 30 years for a diagnosis! That is appalling!
This trivialising of symptoms and delays in diagnosis by health professionals, borders on neglect. The dismissiveness of descriptions from teenagers should never be ignored. I’ve heard of women being prescribed antidepressants and sent to psychologists because “It’s all in your head”! This was done without proper investigation of the symptoms!
When women go for years with debilitating symptoms that are undiagnosed, it deeply affects their lives. Family, friends and work colleagues may doubt her, calling her attention seeking, unreliable and shirking responsibility. Several women described broken relationships. She may go into depression or lash out in frustration and then be diagnosed as depressive or bipolar. Tragically, I have heard of women committing suicide.
Women have been accused of overdosing on drugs or exaggerating symptoms to gain more drugs. Yet the drugs being spoken about are the drugs the doctor prescribed.
Misdiagnosis appears to be common. Because endometriosis can adhere to a range of organs, the symptoms reflect the organs where it is located. So women have been diagnosed with bladder infections, cystitis, irritable bowel syndrome, gluten intolerance, lactose intolerance, pelvic inflammatory disease, even sexually transmitted diseases.
One teenage girl was repeatedly asked about her sex life and was checked for STDs. She felt like the doctor was saying she was promiscuous despite her telling the doctor she was still a virgin.
I met a young woman in her 20’s, full of life, but who had experienced extensive bowel surgery. She had an ostomy bag inserted because the endometriosis had damaged her bowel so severely. She described her fears of going out, her fears of a leak and how she will broach the topic of intimacy with an ostomy bag.
Some women with endometriosis have fertility problems. It is a major reason women have trouble getting pregnant. Women have told me of their excitement in becoming pregnant only to loose it a few weeks or months later. Miscarriage is a heart break for women and can be very debilitating . Of course, partners suffer loss too. Partners are often so busy in a caring role that their own grief of lack of parenthood can go unacknowledged.
When women with endometriosis become ill, parents, partners and children can become carers. These carers do not have sufficient community support especially during the long time it may take to get a diagnosis.
On a practical level, a lack of diagnosis means it’s difficult for women with endometriosis to obtain leave, be effectively treated or have health benefits paid during periods of ill health. The consequences are significant gaps in education and employment without support, that in some cases, results in a life of poverty.
Endometriosis is not a trivial disease.
Raising awareness to shorten diagnosis times will certainly improve women’s productivity and can save lives.
Unfortunately it is surprisingly common affecting an estimated one in ten women which is about 550,000 women in Australia It can seriously damage women’s internal organs and disrupt women’s lives.
Endometriosis is serious.
More funding is needed for research. “The Guardian” estimates in Australia, that endometriosis costs the economy $6,000,000,0001. Six Billion dollars! This is a huge loss to the women and their families and communities! Better treatments thus have the potential to yield a dramatic increase in productivity. In my eyes more money for research is completely justified.
Margaret Kalms has produced Life with Endometriosis by listening to the stories, ideas and feelings of women living with Endometriosis and expressing them through photography. As a result she has produced a collection of art photographs for exhibition/s and will produce an art book that includes the photographs and selections of the stories and experiences of women living with endometriosis.