After suffering the crippling pain of endometriosis for more than a decade, Kristy Michalowsky and her husband Rob have launched a fundraiser for surgery they believe could give her “some quality of life back”. She speaks to Luke Voogt about her journey.
Endometriosis has no cure, but Corio mum Kristy Michalowsky hopes a hysterectomy can lessen the pain she has lived with for more than a decade.
“Right now, I can barely get off the couch – it’s horrific,” the 36-year-old said.
“It ranges from a burning ache to sharp stabbing pains to a hot poker. It can be like Freddy Krueger is right in your womb.
“A hysterectomy is not a cure – there is no cure for endometriosis.”
But Kristy believes surgery to remove her uterus could alleviate some of the excruciating pain, particularly that relating to her menstrual cycle.
“It will give me some quality of life back,” she said.
Endometriosis occurs when tissue similar to that lining the inside of the uterus grows outside of it as well.
With no way to exit the body, the tissue becomes trapped and can cause debilitating pain.
Kristy was diagnosed at 16 with polycystic ovarian syndrome, a hormonal disorder causing enlarged ovaries and small cysts.
She experienced pain on and off, until she gave birth to son Kobie in 2005, and the pain escalated.
But she had no idea what was causing it until she met her “wonderful doctor” Bryan Johnston at Northern Bay Health, Corio, in 2013.
“He put me on the path to finding out what I had,” she said.
Prior to moving to Geelong, she had become frustrated with specialists in the Victorian and NSW public health systems, who she felt had not taken her seriously.
“That’s happened a lot over the years,” she said.
“Dr Johnston was the first one that really listened and helped.”
He wrote a referral that led to exploratory surgery in 2015, in which surgeons diagnosed Kristy with endometriosis and removed some of the tissue causing her pain.
She has since been diagnosed with stage three of the condition, with stage four being the most severe.
“The pain is subjective,” she explained.
“Someone in stage one with minimal lesions could be in absolute agony. Someone in stage four, riddled with lesions and cysts, could be living quite comfortably.”
She has undergone several surgeries and tried all manner of hormonal therapies and pain medications.
She has also tried herbal medicine, acupuncture, massage, physiotheraphy, meditation and various diets in a bid to relieve the pain.
Unhappy with previous treatment and surgeries in the public system, she and husband Rob dug into their superannuation to have another surgery at a private hospital to remove some of the endometriosis in 2019.
Unfortunately, it did little to alleviate the pain.
About a year ago, a gynaecologist recommended a hysterectomy and, after months on the elective surgery waiting list, Kristy visited University Hospital Geelong in June for a consultation.
But specialists recommended against the surgery for at least six months.
“I didn’t even make it to the car before I broke down in tears,” Kristy said.
“You feel so vulnerable and not heard.”
An outpatient report recommended Kristy see a local women’s health physio service, undergo a colonoscopy for a minor bowel condition and have a review in six months’ time.
The report says a hysterectomy could make her pain “worse, better or unchanged”.
After having a son and two stepchildren, she and her handyman husband have no desire to have more kids.
“We have two adult children who are out in the world and a 16-year-old at home, so we have absolutely let that ship sail,” she said.
“It’s my body. Ultimately, I should decide. But we have nothing left to do this [surgery] privately.”
For Rob, nothing hurts more than seeing Kristy in agony.
“To see my wife crying and saying she wishes it would just end is the worst feeling I have ever experienced,” he said.
“I have worked hard all of my life and still do, and knowing that the only thing that stands between my wife and a normal life is the fact that I can’t make enough money to help her, is killing me.”
So he launched a GoFundMe campaign to raise money for the surgery.
“I am doing something I have always been too foolishly proud to do before and asking you all for help,” he said.
Kristy hopes to raise awareness, along with finding some relief from her pain.
“I just want to live, be able to work and thrive with my husband,” she said.
Barwon Health gynaecology director Tony Ma said providing comment on an individual patient would be inappropriate.
“Pelvic pain is a condition that affects at least one in nine women,” he said.
“For some women, it can be debilitating, affecting all aspects of their lives.”
Dr Ma said treatment for the condition involved assessment by a multi-disciplinary team.
“Surgery is one treatment option, but it may not be appropriate for all women and carries both risks and benefits.
“It is recommended that women seek an initial assessment by a gynaecologist to determine a treatment plan and then undergo regular reviews to monitor the effectiveness of treatment and referral for surgery if necessary.
“The decision to operate should be a joint decision by the operating surgeon and patient.”
