ONE in nine women in Australia suffers endometriosis, yet the insidious disease is still something of a taboo subject.
Coronet Bay’s Ania Nowakowska – supported by a wonderful team – made strides to break down those barriers with an educational endometriosis forum on March 28.
The Fire in the Belly forum was attended by over 60 people at the Corinella Hall and viewed by more than 180 people online.
The event was emotionally charged as women shared their harrowing stories of pain and lack of understanding, but ultimately took solace in the fact they were not alone, and help was available.
Dr Scott Pearce – a senior specialist in IVF and fertility, gynaecology, and obstetrics – was a guest speaker on the day.
Dr Pearce spoke about the complexities of the condition and about excision surgery, a procedure that cuts endometriotic tissue in the pelvis.
The panel also allowed for a question-and-answer session, in which women spoke about their experiences.
“There was quite a mix of people there. There were young women, middle-aged women, and a few men. It was wonderful to see the men come along to try and better understand what happens to their loved ones,” Ania said.
“It was emotional to hear what some women had to say. There was a woman I spoke to who became quite emotional because she was so pleased we ran this event. She had always wanted something like this to exist. She lives on her own and her case is quite complicated. She has been turned away by doctors because her (BMI) is too high and they can’t operate. There are some days she can’t get out of bed even to feed herself. We don’t know what causes endo. We can only keep treating it and handle the pain as best we can.”
Weight gain is a constant struggle for endometriosis patients, particularly when taking certain medications.
However, if left untreated, it travels through the body, sometimes attaching itself to blood vessels, and can attack the lungs and the brain.
It can also lead to diabetes and puts major organs at risk.
Despite the high rate of cases, there are just 200 endometriosis specialists worldwide.
Symptoms can begin as soon as a young girl begins to menstruate, and the pain can become debilitating. It affects every aspect of functional life.
“Some women lose their jobs because they can’t get to work. Many lose their social lives. It is unrelenting and there is so little education about it,” Ania said.
“That’s why we are making noise and coming together like this. There is strength in numbers, and we need the government to fund research for a better way to diagnose and treat endometriosis.
“There are four stages of endometriosis, but that doesn’t dictate your pain level. It only dictates how much endometriosis is inside of you. We just need to be heard. This should not be a taboo subject.”
Ania would like to see better education about endometriosis for girls in school and to normalise the discussion.
“It can be quite a touchy subject when it comes to periods. Women make up more than half of the world’s population and we give birth, yet we don’t feel like we can talk about our normal bodily functions that allow us to give birth. It’s such a problem and it’s why this illness goes untreated,” she said.
“I remember as a young girl in excruciating pain, I was looked at like I was always trying to get out of things. By raising the topic early, it will help girls understand that painful periods are not normal, and they need to keep going to the GP until someone hears them and refers them to a specialist.”
Ania said holding the forum was a fulfilling experience.
Katherine Barker provided music on the day and the hall was decorated in yellow, the symbolic colour of endometriosis.
Those who attended were given a bag with booklets of information and a bracelet to symbolise awareness for endometriosis.
“I was surprised when so many people came along, it was wonderful. Many people were incredibly thankful for the event and for being provided the information. It was done for the people who have tried to speak up only to be told the pain is all in their head. It’s not, and unless someone has gone through it, they can’t fathom what it is like. The run-on effects are huge,” Ania said.
“I am lucky to have a wonderful support network who are helpful when needed, but there are many people who live without support. They are considered parasites in society because they can’t work. This disease is so complex and takes your self-esteem away. It is a whole-body condition.”
Ania’s next goal is to have CBD oil included on the Pharmaceutical Benefits Scheme (PBS).
“I was recently approved for CBD oil through the Releaf Clinic. Since then, I have had less flare ups. It has changed my life unbelievably in the last four weeks,” she said.
“It is legal, but expensive and not everyone has access to it. My next mission is to lobby the government to include it on the PBS and help others to get their life back.”
For more information about Fire in the Belly go to facebook.com/UNDERSTANDING.ENDOMETRIOSIS.