How an endometriosis diagnosis can cost a woman $30k

After 15 years of being told by doctors her “astronomical” pain was “just a bad period”, a woman has revealed the exorbitant costs that have come with her delayed diagnosis.

Six months into a budding relationship was not when 29-year-old Tamara Warner would have chosen to broach the topic of having children with her partner.

She wished the subject could have come about naturally, when they were both ready, but endometriosis has stripped her of such a freedom — and so much more.

Ms Warner, a case manager and social work student, was officially diagnosed with the disease when she was 25, but began experiencing pain and other symptoms much earlier in life.

She was only nine years old when her period pain became “debilitating” and 11 when she started taking the contraceptive pill — a futile attempt to regulate her menstrual cycle.

At 12, she had her first surgery. Doctors hoped it would reveal the cause of her symptoms, but it only proved she had cysts on her ovaries.

The possibility she might have endometriosis was never raised.

Tamara Warner said she spent 15 years “begging doctors to believe my pain” before she was finally diagnosed with endometriosis. Picture: Supplied

Ms Warner said her doctors told her the pain she felt was “just a bad period” and advised her to continue taking the contraceptive pill “for my whole life”.

“I had horrific periods from then on,” she said.

“I was on the ground crying, throwing up every month.”

Years later, having spent much of her high school years confined to the four walls of her bedroom, Ms Warner was told by a doctor they suspected she might have endometriosis.

She found a specialist, had her second surgery aged 25, and finally received an official diagnosis.

Ms Warner has now had five surgeries related to her disease — her most recent being on Friday, August 26. Picture: Supplied

After another surgery followed by a “good couple years of everything settling”, Ms Warner’s symptoms returned, with a vengeance.

“This year, my ovary adhered to my bowel so I had to go through an egg collection — essentially like a preservation,” Ms Warner said.

“Because they said it was likely they’d have to take out my ovary.”

Doctors were left with no choice but to remove her ovary and fallopian tube during an emergency surgery on Friday, August 26.

“Waking up and being told they took out my ovary and fallopian tube … it’s been quite hard, mentally,” she said.

“I’ve definitely cried a lot. It’s been overwhelming.

“I’m trying to process how much this disease has taken away from me.

“I’ve had to step down from work before. One thing after another gets taken from you.”

Ms Warner and her partner Levi Karschimkus. Picture: Supplied

Freedom to choose when or if she would like to have a family is perhaps the biggest decision that has been made for her by her disease.

Ms Warner and her new partner had been dating mere months when doctors told them they had to consider trying for a baby now if they were to have any hope conceiving.

“I feel angry that it’s something I start a new relationship talking about,” she said.

“You want to be in a normal relationship where those conversations just happen naturally or when you’re ready.

“He’s been very, very supportive. But it impacts him as well.

Ms Warner said she was sure her partner had “carer’s fatigue”, even if he did not show it.

Ms Warner has now spent more than $30,000 on treatment for her endometriosis. Picture: Supplied

Her disease has made her “reconsider everything” and plagued her with troubling, unfounded thoughts about loved ones abandoning her.

“It just feels so unfair,” she said.

As well as suffering 20 years of chronic pain, fatigue, nausea, low appetite, mental ill health, and now an inability to fall pregnant naturally, Ms Warner has had to shoulder a heavy financial burden as a result of her disease.

Her treatment has so far come at an out-of-pocket cost of more than $30,000 — though she said this estimate does not take into consideration the $12,000 she spent on her recent surgery and egg collection, nor the $1000 she spends each month on appointments and private health insurance.

She has also lost about $8000 this year in wages as she has had to take unpaid leave, running out of sick leave a long time ago.

“It just keeps adding up,” she said.

“Every time I get a Medicare ‘statement of benefits’ or a bill I just think ‘I could have had a house deposit with this’.”

Ms Warner said she was grateful to have the support of her family and friends, including Mikayla Marshall (right). Picture: Supplied

As well as her work, Ms Warner’s study has been impacted by her disease as she has had to ask for extension after extension in submitting assignments due to surgeries and appointments.

Last week’s surgery being her fifth related to endometriosis, Ms Warner said it was difficult to be hopeful she would have a pain-free future.

She has had to return to work sooner than would be best following such a major procedure as she needs the money to fund further treatment.

Her next step will be seeing whether her symptoms subside, then she will need to decide if she would like to start trying for a baby.

She said she feels thankful to have a strong support network of family, friends, and fellow endometriosis sufferers in her corner.

To assist Ms Warner with the medical costs associated with her disease, a loved one has begun fundraising via GoFundMe. To donate, click here.