As women, it seems that we’re more likely to speak about our experiences of childbirth to our girlfriends and sisters, than we are about ‘that time of the month’. And so, for many of us growing up, it really has always been the ‘secret’ of secret women’s business.
For Jodie Dunne, intense monthly pain among other symptoms, was “just part of being a women”. She had lovingly been told by the women in her family who had experienced years of the same symptoms that it was a part of the “family curse”. Trips to doctors proved frustrating as she was repeatedly told her symptoms were common and mild.
That was until Jodie, no longer able to grin and bear it, was diagnosed with endometriosis at age 28. Now 36, Jodie has trodden a complicated and life-changing path with this often misunderstood and misdiagnosed disease.
1 in 10 women suffer from endometriosis, and there are around 176 million sufferers worldwide.
Endometriosis is defined as the presence of normal tissue in an abnormal place. The endometrium (lining) of the uterus spreads outside the uterus and it can occur around other organs in the pelvic and abdominal region.
While symptoms vary from woman to woman, one of the most common symptoms is pain, along with heavy bleeding, fatigue and gastrointestinal symptoms. Symptoms can be so severe for patients it can affect their daily lives. There is no known cause and there is no cure.
“At the time I was diagnosed I was very fit and healthy. Exercise seemed to ease my symptoms and I trained for and participated in endurance events. At times when I approached doctors about my symptoms, I was given the ‘it’s just part of being a women’ line as my symptoms were quite mild,” said Jodie.
But after her persistence to get more answers, the results of laparoscopic surgery told another story, and her endometriosis was severe and wide spread.
“I battled to control my symptoms via very invasive laparoscopic surgical treatment for a number of years. Including laparoscopic surgery 8 months after my daughter was born.”
“At age 36, the endometriosis was so widespread I made the decision to have a hysterectomy. Even though I knew it wasn’t a cure I wanted to take the chance at an increased quality of life.
“I’ve had my uterus taken out, one ovary removed, and have undergone similar surgery on my bowel as to what a bowel cancer patient would have, so it’s not something to take lightly,” she said.
As you can imagine, the disease has had a big psychological impact on Jodie’s life.
“I haven’t worked since my major surgery. My studies have been put on hold as well as other personal goals. It has been an emotional roller coaster, dealing with pain and coming to terms with the surgery. It has also been very financially stressful for my family.
“I discovered that there was a huge difference between me deciding not to have anymore children and a disease taking that decision from me. I struggled with thoughts before and after surgery about being less of a woman because my uterus was gone,” Jodie said.
Unfortunately for Jodie, her endometriosis has returned, so she now faces the next hurdle of decisions, medication and potential surgery.
“Lucky for me, I have a wonderfully supportive husband and family around me and a gorgeous daughter, who have all helped me get through some very tough times personally.
In her way of regaining control from the disease, Jodie is in the throws of establishing a charity, with three other people who’s lives have also been greatly affected by the disease. The aim of the charity will be to help with awareness, education and research of endometriosis.
“I do believe there is a lack of knowledge and understanding both socially and in some parts of the medical profession about the disease. This means that there can be a delay in diagnosis for women of between 7 and 10 years. That’s a lot of pain and a lot of time that they disease can do damage if not treated”.
“If my daughter is a sufferer, I want her to be able to access the support she needs and not second guess herself or have to fight for answers. I don’t want her to be told she’s overplaying her symptoms, and that she can get the treatment she needs to minimise the damage. We need to break the cycle of ‘secret women’s business’ and I’m hoping my work will be one step towards that,” said Jodie.
We will bring you the details of Jodie’s charity when it’s off the ground running, until then, you can visit Jodie at the Endometriosis Australia Facebook page: http://www.facebook.com/EndometriosisAustralia