Perth women battle ‘invisible’ disease

On a family holiday in the state’s north-west, Caylee Wallis experienced the worst period pain she had ever had. “It was the month of my 17th birthday and at this point we were somewhere in the Kimberley. I think it was the second day of my period, usually the most troublesome day, and I could feel the cramps starting,” she says.

“I didn’t care where I was at that time. I never did when I felt this pain. I just collapsed onto the hot, red sand … crawling up into a little ball on the ground made me feel just a tiny bit better.”

Wallis is now 21 and the past seven years of her life have been plagued by endometriosis, even though she didn’t know she had it. She thought every woman went through the same thing every month.

Besides the cramps, women with endometriosis experience bloating, nausea, constipation, diarrhoea, migraines, mood swings, lower back pain and exhaustion. Days off school and work. Days stuck in GPs’ rooms and hospitals, going from doctor to doctor. Delayed diagnosis.

Endometriosis is a disease in which tissue similar to the lining of the uterus grows in the pelvis outside the womb, around the fallopian tubes, bowel, sometimes suffocating the ovaries. The growth can cause scarring, pain and adhesions. One in three women with endometriosis face infertility complications and only discover the disease when they are unable to get pregnant.

In Australia, endometriosis affects more than 700,000 women, and takes an average of seven to 12 years to diagnose. Why is that? Why has this disease taken so long to attract funding and attention? What support is there for women suffering? And, will the Federal Government’s belated National Action Plan, launched on July 25, do what it’s supposed to?

Caylee Wallis only found out this year she had the disease after posting her symptoms on Facebook group, Help A Sister Out: Perth, where women told her what she was experiencing wasn’t normal. Multiple women suggested endometriosis and, after doing some research and finding out two of her aunties had the disease, she went to see a specialist. According to the Australian Health Department, women and girls who have close relatives with endometriosis are up to seven to 10 times more likely to develop it.

Caylee Wallis during her laparoscopy.
Photo: Caylee Wallis.

One in 10 Australian women battle through the symptoms for years before they are diagnosed because the only way to find out for sure is a surgical operation called a laparoscopy. This is where a thin telescope is inserted through the belly button and a biopsy is taken. If any tissue is suspected to contain endometriosis, it can be removed and sent off for analysis.

Wallis had her laparoscopy in August. “It was very tough as I had gone from quite a fit person to this very vulnerable, weak young girl in a hospital bed,” she says. “My surgeon … confirmed that endometriosis was found on my pelvis, in front of my bladder, and a few other places. Fortunately, none of it was found on my fallopian tubes and ovaries, which was a big relief to me.”

Another woman with endometriosis, Joanne McCormick, repeatedly collapsed, vomited and had stomach pains that doctors put down to viruses or food poisoning. When she was 21, she went into King Edward Memorial Hospital to see a gynaecologist. She was in a bed in a maternity ward when she was given the diagnosis.

“This gynaecologist came into the room and she said, ‘Endometriosis, you probably won’t have kids’,” she says. “So I’m surrounded by people about to give birth, being told I have this word that I couldn’t even pronounce and had the pressure put on me right then to start thinking about having kids.”

Five years ago, McCormick launched the Endometriosis Perth Sisterhood of Support. It started with 64 women and now has around 1400. “There was nothing in Perth, there was no support,” she says. “Nobody knew what endometriosis was. There was nowhere to go. No one to talk to and no family … no friends that understand.”

Endometriosis Perth Sisterhood of Support. Photo: Jennifer North Photography.

McCormick says she created the online group to give women a space to discuss what they’re going through with others experiencing the same thing. “If you think of that person … who’s lost their job [because of their debilitating symptoms] and hasn’t got access to anything and is sitting at home, I sleep better at night knowing that they can find us,” she says.

Monique Alva, who co-runs Endometriosis Perth Sisterhood of Support, has had seven surgeries, lost two jobs, friendships, relationships, and tried lots of different medications. “Nothing works,” she says.

“It’s really just about educating people. And the more people that talk about it the more comfortable others feel to talk about it.”

The plan for the online group is, says McCormick, to “give some visibility to that invisible illness”.

And the National Action Plan for Endometriosis? McCormick and Alva hope to see financial support for women with endometriosis, and more training for medical professionals diagnosing and treating the disease. “People who have lost their jobs … what have they got? How are we supporting them?” McCormick says. “Do we really want to be managing symptoms or do we want to be treating the disease and giving people the best chance possible?”

The National Action Plan could result in improved public understanding of the disease, and provide education for healthcare professionals. It could deliver more affordable and accessible pain management, mental health and psychosocial care, simpler and less invasive diagnositc tests and more treatment options, in which patients, families and carers are enabled to be more active. And It just might narrow the life-quality gap (including in social and economic participation) between women with endometriosis and their peers. That is yet to be seen. In the meantime, women with endometriosis get on with living as well as they can.

After her surgery in August, Caylee Wallis went on holiday to Europe. Reflecting on her experience, she says she learnt so much about herself through her struggles and has hope for the future. “I hiked up a mountain in Italy and I thought for a moment on what I have achieved and how I have recovered in the weeks since my surgery.

“I want more people to know, women are so strong and are capable of so much.”