'They're in desperation': Canberra women breaking the law to treat endometriosis pain wi
Photo: Stepfh El has had surgery eight times to treat her endometriosis, but she says the pain can still be unbearable. (Supplied)
Canberra women with endometriosis are self-medicating with cannabis, but legalising the drug might not help
Stepfh El started to develop signs of endometriosis from the age of 11. She was misdiagnosed for years, until 2014, when she had emergency surgery for her chronic pelvic pain.
Endometriosis affects more than 600,000 Australian women
Researchers have found one in 10 women with endometriosis use cannabis to self-manage pain
The ACT's new laws may not make access to cannabis for medicinal use any easier
"They thought I had appendicitis, but it turned out I had quite severe endometriosis and my whole pelvic cavity was glued to my pelvic wall," she said.
Since then, the 32-year-old has had a further seven surgeries.
Each month, she spends between $200 and $600 on pain medication, although the pain is never completely gone.
"Sometimes it feels like I've been stabbed with a hundred knives through my abdomen or it can feel like my bones are broken glass," she said.
"At my worst, I was put on a ketamine drip."
Like thousands of other endometriosis patientsin Australia, Stepfh thought medicinal cannabis might be an option, so she asked her doctor.
"I asked once or twice, but it was brushed aside with, 'that's for palliative-care patients and drug-resistant epileptics'," she said.
Women risking illegal drug use to avoid opiates
Endometriosis is a chronic condition that is estimated to affect more than 600,000 women in Australia.
It also costs the economy roughly $7.4 billion a year, including direct healthcare costs, according to the co-founder of advocacy group EndoActive, Lesley Freedman.
"You would be shocked at the amount of strong medication prescribed to women to try and relieve the pain of endometriosis," Ms Freedman said.
"Some people call an ambulance just so they can get the [anaesthetic] green whistle."
Photo: Lesley Freedman and her daughter Syl, who has endometriosis, founded EndoActive in 2014. (Supplied)
Researchers recently found about one in 10 Australian women with endometriosis were using cannabis to self-manage their pain, according to the findings of an online survey published in the Journal of Obstetrics Canada.
Ms Freedman said her group had worked with dozens of women using illicit cannabis for their pain, because they could not get a prescription to obtain marijuana legitimately.
"These women are very much aware that it's very much illegal, and that they're taking some risks," Ms Freedman said.
"They use it not only to relieve pain, but also for sleeping — and it gets them off Endone, or using other heavier drugs.
"They're in desperation."
New cannabis laws might not ease pain for users
The ACT's new cannabis laws will come into effect at the end of next month.
The legislation allows for an adult to possess up to 50 grams of cannabis and for a household to grow a maximum of four plants.
Photo: Stepfh El said medicinal cannabis needed to be explored as an option for women with endometriosis. (Supplied)
However, the new laws won't allow for someone to buy or be given marijuana as a plant or a seed, something only the Commonwealth can legalise.
Stepfh said she would grow cannabis, were it not for the fact she would have to break the law to obtain it.
"That would be something I would be very open to," Stepfh said.
"Provided it wouldn't affect my job or my son.
"Even with medications, I've never taken anything when I've been the primary caregiver of Thor."
But Carol Bennet, who heads peak body Pain Australia, said she was not thrilled about Canberra's new laws for personal cannabis use.
"For some people, there may be the capacity, if medicinal cannabis or cannabis is used in large doses and for long periods of time, to trigger psychosis or other mental health events," Ms Bennet said.
"Recreational use, which is really what the new ACT laws are about, is very different to using cannabis for chronic pain purposes. Endometriosis is real — despite what my first doctor told me
When Stephanie told her doctor she thought she had endometriosis he laughed at her.
But Ms Bennet said there were unanswered questions about medicinal cannabis, and many of its proponents were funded by the industry.
"We know there's a huge industry that drives the medicinal cannabis [messaging], but we are not seeing the scientific, clinical evidence that we'd need to see to say that this is likely to be a really effective treatment," she said.
Stepfh said she just wanted something that worked for women with endometriosis.
"Any look into women being able to gain back their lives, and enable them to live more presently, and manage their pain, should be looked at," she said.
"It's not fair to just brush [cannabis] aside and say 'no' when the alternatives are things like morphine and Endone." Originally published here: https://www.abc.net.au/news/2019-12-29/medicinal-cannabis-to-treat-endometriosis-pain-canberra/11819810