If you know 10 women, you know endometriosis. For too long, patients have been suffering from a condition typified by chronic pain in silence. But no more, central Victorian women told EMMA D'AGOSTINO.
GUILT. That’s what Dr Angelika Borozdina believes has been preventing many people from speaking about endometriosis.
“When you’ve got a story about a young mother with three children, who’s dying from cervical cancer, what do you feel?” the Bendigo gynaecologist and obstetrician asked.
“It’s a tragedy – those three children are going to lose their mother.”
But what about a mother of three children who is out of work because of chronic, seemingly inexplicable, pain? Who struggles to spend as much time as she would like playing with her little ones, or taking them out and about, because she’s floored by an illness often invisible even to ultrasounds?
“They’re not going to die, but they don’t have a life,” Dr Borozdina said.
The first challenge of endometriosis is getting a diagnosis.
It can take up to 10 years before the condition, in which cells similar to those that line the uterus grow in other parts of the body, is recognised for what it is.
For years, Bendigo resident Shannon Wallace had no idea why she was experiencing pain severe enough to make her vomit.
“I just wanted to feel better,” she said.
A doctor first mentioned endometriosis when she was in her early 20s.
She had been “feeling off” since she hit puberty at the age of 14.
“I was always in immense pain, chronic fatigue, with heavy menstruation...” Miss Wallace said.
It reached the point where the 25-year-old said she was “running on empty.”
“I couldn’t work, I couldn’t do anything, I was just in pain,” she said.
People couldn’t see that she was sick, and she couldn’t explain why she was unwell.
“To them, it’s just laziness,” Miss Wallace said.
“It’s so hard to tell people, ‘I’m sorry, I just can’t do that today.’”
The health professionals she has seen have ranged from helpful to blatantly disdainful.
“I had a male health professional tell me, ‘If you think this hurts, try having a prostate exam,’” Miss Wallace said.
Numerous blood tests and ultrasounds failed to identify what was amiss.
“They said nothing was wrong,” Miss Wallace said.
Laparoscopic surgery – the diagnostic tool for endometriosis – revealed growths from her reproductive organs to her bladder and bowels.
Doctors removed as much as possible during that procedure, almost three years ago, but Miss Wallace is in the process of getting a referral for a second surgery.
Though she said the first surgery had improved her quality of life, with each procedure comes the risk of scarring the organs she one day hopes will enable her to become a mother.
Shedding the endo stigma
Jasmine Glover’s seven-month-old son Leo is proof there is hope of parenthood for patients with endometriosis.
The condition can cause infertility, and Dr Borozdina said some patients might need assistance to conceive.
“It depends on the severity of the endometriosis and what area of the female organs has been affected,” she said.
In Ms Glover’s case, motherhood came after three-and-a-half years of In Vitro Fertilisation.
The 40-year-old Trentham resident credited her endometriosis excision specialist with turning her life around.
Before her diagnosis, in 2005, she suffered from pain so debilitating she was unable to walk for periods at a time.
She was told the cause of her pain was everything from a burst ovarian cyst to a muscle.
“So often it’s put down to, ‘It’s just your period, it’s just a burst ovarian cyst...’,” Ms Glover said.
A five hour surgery revealed extensive endometriosis, from her reproductive organs to her diaphragm.
“It was pulling organs together and attaching organs together,” Ms Glover said.
It was too much to clear out in one procedure, and in 2009, Ms Glover underwent a four hour surgery.
“The pain never came back like it was before the first surgery,” she said.
But she said the scarring resulting from the surgeries made for a painful pregnancy.
“It tore all the adhesions that were still in there,” Ms Glover said.
Much like Miss Wallace, she said she found it harder to explain why she was unwell before she had a diagnosis.
And despite the increase in resources and information available, both women said the myths about endometriosis were rife.
“There are women going to see doctors who are still being told to go and get pregnant, it will cure you,” Ms Glover said.
While Dr Borozdina said pregnancy was not a cure for endometriosis, she said it could help.
“But it doesn’t mean they need to get pregnant to get rid of endometriosis,” she said.
Miss Wallace said there was misinformation about what age women could develop endometriosis.
“There is also a theory that only middle-aged women get it,” she said.
The disease often becomes evident in adolescence, according to Endometriosis Australia.
Dr Borozdina said the condition had become more common, especially amongst young girls.
“Often I see young girls, they come with their mothers, but early, before they start VCE, to try to sort out this problem,” she said.
“But some of them don’t think it’s abnormal because they’ve been told it’s normal to have pain during their period.
“It might be normal, but when it has become so bad it’s affecting their life and they have to miss school, and miss uni, and miss work, it’s not normal.”
She said painkillers such as Panadol ought to provide some relief for ‘normal’ period pain.
“If the Panadol doesn’t help, it’s not normal,” Dr Borozdina said.
Both Miss Wallace and Ms Glover have encountered medical professionals who have been dismissive of their concerns, particularly during their younger years.
“Every woman is her own best advocate,” Ms Glover said.
‘Chronic pain is not normal’
Not all women with endometriosis will experience debilitating pain – like any health condition, its severity varies from person to person.
But Dr Borozdina said pain was one of the most important elements of the patient’s clinical presentation.
“Painful periods, pain between periods, pain during intercourse… just pain, all the time,” she said.
Of course, she said there were other health conditions that might explain that pain.
“But that’s our role as the medical practitioner to rule out,” Dr Borozdina said.
Endometriosis is thought to affect one in every 10 women.
Given she sees at least one patient every day for issues relating to endometriosis, Dr Borozdina suspects that figure is under reported.
Patients come from as far as Deniliquin to seek her assistance.
In addition to the psychological and physiological impact to the patient, Dr Borozdina said endometriosis affects society as a whole.
It affects families. It affects workplaces, with an estimated cost of $7.7 billion to Australian economy annually.
Two thirds of those costs are attributed to productivity loss, while the remaining $2.5 billion are direct healthcare costs.
“I think awareness is the most important thing,” Dr Borozdina said.
“If people in the community are aware this is the problem, it’s going to change a lot for them.”
End the silence
“It is not that particular patient's fault she has got endometriosis,” Dr Borozdina said.
“It is unfortunate she has developed endometriosis.”
She said the question health professionals and members of the broader community needed to be asking themselves was: How are we going to help?
“It's not just about the gynaecologists doing the laparoscopy and removing the endometriosis and putting in place the medication and the GP to follow up,” Dr Borozdina said.
“It's about the support and giving the best opportunity for this women to be heard, to have the extra support from the psychological, physiotherapy... holistic approach.”
Our next article on endometriosis will explore opportunities for improved support for patients in regional areas.
Meanwhile, keep an eye on our Facebook page for an opportunity to chat with Dr Borozdina.