Endometriosis, also known as 'endo', is a condition that is more common than diabetes or breast cancer – affecting one in 10 women of reproductive age worldwide – yet many people don't know what it is.
It also takes, on average, 7-10 years for a woman to get a diagnosis of endo, from when she first visits a doctor about her symptoms.
Endometriosis is diverse condition and every woman with the condition has her own story to tell.
In September 2018, Jean Hailes for Women’s Health launched the campaign #EndoWise. The aim of the campaign is to build awareness of this condition and offers a chance for the women of Australia who have endo, to tell their stories.
Firstly, what exactly is endo?
Endometriosis is a chronic condition in which cells similar to those that line the uterus (the endometrium) grow in other parts of the body. These cells undergo the same menstrual changes as those inside the uterus, but unlike period blood, have no way of escaping, so they build up, causing problems such as inflammation, scarring, reduced fertility and – in three out of four cases – pain.
On a physical level, symptoms include severe period pain, pelvic pain, painful sex, pain when going to the toilet, heavy bleeding and infertility.
The often long delay in diagnosis, dealing with chronic pain and the complexity of the condition means that endo can also affect women on a practical and emotional level, particularly if they have to miss school, work or social occasions because of their symptoms, as can often be the case.
Jean Hailes clinical psychologist Gillian Needleman says that campaigns such as #EndoWise are crucial in spreading awareness of lesser-known health conditions, but also help to shed a sense of isolation that can sometimes accompany conditions such as endo.
“Personal accounts add an individual piece to a shared story that allows an understanding of both the uniqueness and the shared experience of a health condition,” explains Ms Needleman.
The symptoms of endo such as painful periods or heavy bleeding can be deeply personal, and often not discussed in general conversation. Bringing real stories of endo out into the open, can help to bridge the gap and provide reassurance in what can often be a confusing time.
“It is validating, educational and offers a sense of not being alone”, she says.
A message of hope
As well as increasing awareness of the physical symptoms of endo, #EndoWise is all about delivering a message of hope.
“Psychologically,” says Ms Needleman, “hearing other women’s stories and experiences of endo, can offer a very powerful sense of connectedness and wisdom.”
For some women, endo can be a complex condition to manage, but in ‘Liza’s Story’, Liza makes the choice to be the powerful one in the situation, not allowing a diagnosis of endo to define her life.
In ‘Jennifer and India's Story’, greater experience and knowledge of endo symptoms, led to a shorter diagnosis time for India and less suffering in silence.
In ‘Alice’s Story’, supportive and non-judgemental friends made all the difference.
Watch the video series by visiting the #EndoWise campaign page or follow Jean Hailes on Facebook to stay up to date – there is even a closed Facebook group you can join to access a supportive community of women with endo.
Published with the permission of Jean Hailes for Women's Health
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