Endometriosis...It's Fucked.

It took Kristie and Nicole 20 years to be diagnosed with endometriosis. It took Joanna 13 years to be diagnosed.

All three women had severely painful periods from their first period that impacted their daily lives - fainting, dizziness, convulsions were their norm.

But they weren’t listened to, told time after time that the pain is just their period cramps, just ovulation, just overreacting.

Endometriosis is a disease where tissue similar to the lining of the uterus grows outside the uterus. Around one million Australian women have endometriosis at one point in their lives. It can start from the first period and affect women until they enter menopause.

Now, both Kristie and Joanna have gone through the lengthy process of laparoscopic surgery to help relieve the pain, but it hasn’t been without misdiagnosis and being dismissed.

“I had one [doctor] tell me that is was just ovulation, which I was like, ‘I’m not ovulating 24/7,'” Kristie said.

“The same one also told me that I needed to lose weight. A lot of them told me it was just women’s issues, it’s completely normal.”

Joanna had similar experiences with medical professionals, with a male doctor turning to her partner at the time telling him he may want to “rethink” due to the risk of her being infertile.

"...it was just women’s issues, it’s completely normal.”
Kristie

Endometriosis has shaped their lives in every capacity, they’ve felt the impacts emotionally, professionally and in their relationships.

“I do get a bit of judgment from the world I've found, because I get those mood swings in the few days where I can't get out of bed. I haven't been able to find a job for the last few years, so I've had to make my own job,” Joanna explains.

“I’ve had past relationships where I’ve been in pain and there wasn’t a lot of support. It was just, ‘oh, you need to go and fix yourself,’” Kristie said.

With a lack of funding and research being put in to the understanding of endometriosis, it can be a confusing and isolating experience for women. Bandaid solutions of hormonal therapy, birth control and diet and exercise are abundant.

Nicole, who has experienced the detrimental effects of endo, conducted a research of 49 women who suffer with endometriosis and found that most people valued having “that one doctor” who helped change everything for them.

“That one doctor who cared, empathised and actually listened to what I was saying, what the woman was saying, and that one doctor was the stepping stone that they needed to get their diagnosis,” Nicole explains.

Through her research, she found women valued doctors who had heard of endometriosis and had the ability to recognise some of its major symptoms, are willing to refer to specialists when knowledge was beyond their skill base, as well as a list of other things.

The impact of diagnosis. Supplied by Nicole Fernley.

The impact of non-diagnosis. Supplied by Nicole Fernley.

Nicole also acknowledged there is a cost on the body, with the illness having a “wear and tear” impact with scarring. This is corroborated by Kristie and Joanna.

“During the first few days of my period, I can't move. I stay in bed for at least the first day or two. Then I got PCOS, and then I put on more weight because of the insulin resistance, which has increased the endo, and it ended up growing into my spine,” Joanna explains.

“Maybe a week before my period I'll get cramping and back pain. But, sometimes I'll get it outside of the period as well, during intercourse sometimes it'll be painful,” Kristie said.

In the budget announcement this year, the Federal Government announced $49.1 million will be invested in helping people with endo across the country.

From July 1 2025, extended consultation times and increased rebates for specialist gynaecological care will be added to the Medicare Benefits Schedule.

But is this enough? The women agree that while it’s a start, much more needs to be invested in awareness. Diagnosis time still averages around seven years. They think more funding, awareness campaigns and relief for women who are suffering needs to be prioritised.