Chronic illness diagnosis 10 years in the making after rejection, misdiagnosis
It’s a debilitating chronic illness impacting one in every 10 Australian women, but endometriosis remains a serious, taboo topic, unspoken about my many women, and more alarmingly, undiagnosed and untreated.
Alicia Mackay, 37, suffers from endometriosis, a condition which, statistically, impacts thousands of women in Toowoomba alone, and millions throughout the country.
According to Endometriosis Australia, endometriosis presents itself when the tissue that is similar to the lining of the uterus occurs in other parts of the body, causing pain and, in some dire cases, infertility.
Miss Mackay was diagnosed with the serious illness only five years ago, despite more than a decade of suffering with debilitating pain, and being dismissed by specialists.
She first noticed something was wrong in her early 20s, when she identified an unusual amount of period pain during her menstrual cycle, along with heavy bleeding, and cramping.
She was initially misdiagnosed with polycystic ovarian syndrome, a complex hormonal condition where cysts form on the ovaries.
She was placed on the contraceptive pill to mask the symptoms of what she believed to be PCOS, but the treatment had no effect.
But as the symptoms worsened, Miss Mackay knew it was something more serious.
When she reached her 30s, her pain intensified and she sought help again.
“It got to the point where I was in more pain during my cycle because it would be the period and ovulation pain, so you’d have maybe a week during your cycle where you weren’t experiencing any sort of pain,” she said.
“The pain could change from the menstruation pain, with your cramping, to your ovulation pain which is really sharp, and lots of pressure.”
She described her first visit to a gynaecologist as disappointing, saying she felt she was not taken seriously because she informed them she didn’t want to have children.
“At this time in my life I don’t really want children, so I made that clear to them and from that I felt dismissed,” she said.
“There was no real explanation about what endometriosis is, no treatment options, no explanation.
“I walked away from that appointment thinking specialists don’t help.
“What’s the point?”
Miss Mackay let it slide and for years lived in pain, unsure whether a treatment plan was an option for her after an overwhelmingly negative experience with a specialist.
Last year, however, under the guidance of a new specialist, Miss Mackay had laparoscopic surgery to remove the endometriosis from her body and has since been visiting nutritionists and physiotherapists to help improve her condition.
Another treatment option for Miss Mackay was the insertion of a Mirena, a hormone-releasing IUD, inserted into the uterus, which prevents pregnancy, and also reduces the symptoms of endometriosis.
She said she still notices a certain stigma around discussing the condition, despite the “staggering” number of women that suffer.
“It’s just one of those things that’s not talked about,” she said.
“That’s one thing I want to encourage women to talk about, because pain isn’t normal.
“Yes, while you do experience some pain during menstruation, you’ve got to understand your own body.
“If you’ve always had pain from when you were young, you don’t know any different.
“You can have it from when you’re a teenager but it goes undiagnosed for eight to 10 years because it just gets put down to having normal symptoms of someone that’s starting their cycle.”
Her advice to women in similar positions is to not take “no” for an answer, and don’t accept any kind of dismissal from health professionals.
“That pain and other symptoms are not normal,” she said.
“Know your own body.
“When something is different, go to the doctor and don’t give up until you get the help.
“Also talk about it.
“There’s so many people that I spoke to when I was going to have my surgery that didn’t know what endometriosis was.
“There needs to be that education.”
Originally published as Chronic illness diagnosis 10 years in the making after rejection, misdiagnosis