Let’s Talk | 'I thought it was normal’: Chloe Jones shares her endo journey

But more than a statistic, Chloe has been battling the effects of endometriosis for more than 20 years, only being officially diagnosed at 36 “riddled” with the disease.

“Up until not quite 12 months ago I wouldn’t even talk about it with anyone, it’s such a taboo topic,” she said.

“Like who talks about their period? It’s a ‘girly problem’, you just need to shut up, basically.

“But back then I thought it was normal, I thought everyone had that problem.”

Every day is like entering the lottery for Chloe.

She wakes up not knowing whether she’ll manage capturing peoples’ lives through her business, Chloe Jones Photography, or curled in the fetal position, hoping for some form of relief.

“I can put up with the bleeding, it's the pain that's debilitating, I can’t put up with the pain,” she said.

The word debilitating has been uttered time and time again by Chloe, there’s not many others that come close to describing the crippling pain, exhaustion and life lost — perhaps grief would be the closest association.

Endometriosis is characterised by tissue growing outside the uterus, often affecting other organs. Symptoms include pain, heavy or irregular bleeding, fatigue, nausea and possible infertility, though the list goes on.

Beginning at the onset of her period, Chloe endured pain unlike anything she’d felt before.

Her pain was accompanied by heavy bleeding, which more often than not came out of nowhere, at times soaking through her clothes.

“I remember from high school and into university, mum would take me to doctors, gynaecologists and specialists in Melbourne,” she said.

“They pretty much just said, ‘it’s normal’ and ‘go on the pill’.”

After almost 20 years, in 2020 Chloe was advised by her GP it was time to come off the contraceptive method but with memories of her younger years, haunting instances of continuous bleeding for six to eight months at a time, Chloe was admittedly hesitant.

And rightly so, while her symptoms were still present on the pill it had dulled the extremities but within the first week without it, the pain became immense.

What followed was a laparoscopic surgery, the only diagnostic measure for endometriosis.

The surgery confirmed what specialists had suspected — though the severity of her endometriosis was surprising.

After removing the widespread lesions, except for a small piece on her bowel, Chloe’s first procedure brought a sliver of relief for eight weeks.

“I asked if it was going to grow back and they said they don't know,” she said.

“For some people, laparoscopic surgery might last 12 months, it might last five years, maybe 10 — it might never grow back, you just don't know.”

Chloe was informed her endometriosis was the fast-growing type — she endured her second surgery only 15 months out from the first after experiencing myriad symptoms.

Though this time, the tissue had spread further to her bowel.

“I knew I was having the bowel resection prior, I just didn’t know how bad it was,” she said.

Surgeons found the endometriosis had grown to such a degree it had punctured through her bowel and was almost causing a blockage.

Even still, her pain has not subsided and the road ahead isn’t looking any clearer.

Despite the prevalence, due to minimal research the disease still has many unknowns.

“Every single person you talk to, they have a different story,” she said.

“Different symptoms, different doctors, different surgeries, different treatments.

“I'm flabbergasted that in today’s day and age we don’t have a cure or some form of better treatment; how can the only treatment be surgery?”

Each person with endo can present different symptoms, in some cases those with stage one may have more severe symptoms than those with stage four.

Similarly, treatment methods such as surgery, pain medication, diet, even having a baby or a hysterectomy, may help for some but not for others.

Compared to what was available in metropolitan areas, Chloe said receiving treatment regionally had been difficult.

As a result, her journey has at times felt isolating.

Chloe’s taken to supplementing the education on endometriosis she never received, self-educating with podcasts, books and research.

She’s implementing recommendations from specialists and “working through my (her) options”.

But as a chronic illness sufferer, Chloe knows the future may still hold challenges.

Her journey has warranted a word of advice for others: the one in nine.

“Go to GPs, go to specialists, and if you don't get the answers that you want or you feel like they’re not believing you then seek a second opinion,” she said.

“Just keep keep searching until you find the right answers. Don't give up.”