Once a month, Jessica Spain found herself lying on the cool bathroom tiles, curled up in agony.
Since the age of 14, the now 30-year-old had tried everything to relieve relentless period pain that was so bad it also caused vomiting and diarrhoea.
“I was given over-the-counter medications and told to try magnesium,” she said.
“Eventually I was put on the contraceptive pill at about 15.”
Ms Spain tried to come off the pill after getting married.
“The results were disastrous,” she said.
“I remember being on a two-night cruise away for work and being curled up in the shower, just in absolute agony, vomiting in the shower.”
Ms Spain spent 12 years battling her health before eventually being diagnosed with endometriosis, an often painful condition where the endometrial lining grows outside the uterus.
Living in the regional city of Hervey Bay, three hours north of Brisbane, didn’t make her diagnosis or treatment any easier.
She had to wait for appointments with travelling specialists and take additional time off work to travel for treatment.
It has prompted the social worker to start a PhD looking into other women’s experiences when obtaining an endometriosis diagnosis.
“There’s a lot of discussion already about how difficult the disease is, but getting to the point of getting a diagnosis for the disease is absolutely horrific,” she said.
Normalisation of symptoms
Distance and cost are not the only barriers for regional women, according to Endometriosis Australia’s medical director Associate Professor Anusch Yazdani.
Dr Yazdani said the normalisation of symptoms affected young women in rural and remote communities more than their city counterparts.
“For women who are in metropolitan areas, there’s often a larger peer group to provide some context,” he said.
“Whereas if you’re in rural Queensland and it’s just you, and you don’t have any peers to discuss it with, this makes it more difficult to understand what you are actually experiencing is abnormal.”
Ms Spain said she remembered thinking that other people must have had it worse than she did.
“I’d love to know how many people are told ‘I think the pain is in your head, I think you’re anxious, you’re stressed, you need to try and relax’,” she said.
“It very much goes back to that notion of hysterical women, that we’re irrational, exaggerating our pain, it can’t possibly be that bad, it’s normal, it’s something that we should just suck up.”
‘Almost gaslighting myself’
Ms Spain was finally diagnosed with severe endometriosis when she was 28, after having a miscarriage.
“After that, my body had changed,” she said.
“I had horrific pain with bowel movements, with urinating I was climbing up the wall like a gecko, and I started experiencing numbness between my legs.”
Ms Spain saw her GP a few times, and while endometriosis was discussed it wasn’t taken any further — it was assumed to be irritable bowel syndrome.
She pushed for a referral to a gynaecologist who linked her symptoms to her miscarriage and her body’s yearning for the loss of the baby.
Ms Spain began seeing a psychologist and had womb healing massage to try to relieve her symptoms.
“Eventually they agreed to do a laparoscopy under the premise of starting IVF,” she said.
“It was almost gaslighting myself, that I had to make myself OK with the outcome, that if they did say they found nothing, I had to come to peace with that.”
Lengthy diagnoses
Dr Yazdani said it was unfortunately a familiar story.
“Before 2000, the average time from first presentation to diagnosis was about 12 years and it involved no less than seven practitioners,” he said.
“The last set of data that we have, which is from 2021, suggests that that time frame has now got down to two years.
“But those women still need to see an average of about four practitioners before a diagnosis of endometriosis.”
He said the time from the onset of symptoms to first seeing a doctor was the most troublesome to shorten.
“That seems to have remained fixed at about three years,” he said.
But he said hope was on the horizon.
Dr Yazdani said Australia was leading the way, being the first to announce a national action plan for endometriosis, and recently opening 22 dedicated endometriosis clinics across the country.
“We are the only country that has had such a large injection of funding and we are the country with the highest research output,” he said.
“At the moment, we’re the only country that provides dedicated training to its specialist workforce in the treatment of endometriosis, so I think we can hold our head very high over here in terms of hopefully providing solutions for women and families suffering from endometriosis.”
Time to redefine
Dr Yazdani said stories such as Ms Spain’s were helping researchers find out the causes and risk factors of endometriosis.
With more people discussing the disease and the injection of funding and interest, Dr Yazdani said it was time to redefine the disease and reassess the reasons women were getting endometriosis.
“We really haven’t been able to do that up until this point because people haven’t talked about it,” he said.
“We haven’t had the raw data to be able to do that analysis, but because of the funding that has come out of this, we can now look at genetics more closely, we can look at mechanisms of disease more closely, we can actually assess the natural history of the disease more closely.
“We’re actually looking at a whole new era in endometriosis research and with research comes new diagnosis and, in particular, non-invasive diagnosis.
“Because one of the big limitations is having to have laparoscopy at the moment, though we’re pushing away from that [to] non-invasive diagnosis and non-invasive treatments and prevention.”
Get our local newsletter, delivered free each Thursday