Women with endometriosis quietly turning to cannabis for pain relief

The pain in Doris' womb and back was so bad she couldn't feel the second-degree burns she was giving herself through a hot water bottle across her back.

"I couldn't feel it, because the pain from my back was so intense that it was just another thing," she told Newshub.

She describes collapsing in the street from pain; she describes vomiting at a work function.

For years, Doris had no diagnosis. She was prescribed medication after medication to deal with her excruciating period pain.

During surgery, after 17 years, surgeons found a diagnosis: endometriosis.

It's a condition that causes intense pain when a layer of tissue that normally covers the inside of the uterus grows elsewhere, on organs such as the bowel, cervix and bladder.

One in 10 women have the condition and there is currently no cure. The pain and other symptoms are simply managed. 

Other sufferers  include Girls writer and actor Lena Dunham, who has publicly struggled with the condition, going through nine surgical procedures before eventually undergoing a hysterectomy -  the complete removal of her uterus - at the age of 31. Despite the intensive surgery, there's no guarantee her pain will stay away.

Text reads: Endometriosis  An estimated 1 in 10 women have endometriosis Symptoms include: - Pain with periods - Bowel problems (bloating, diarrhoea, constipation, pain) - Sub-fertility or infertility - Lower back pain - Tiredness - Painful intercourse
Quick facts about endometriosis. Photo credit: Newshub.

Two years ago, Doris' condition got worse.

Instead of the pain occurring only during her period, it was "constant, ongoing pain in the lower back and lower stomach".

The doctor prescribed her increasing doses of opiates, which made work and her social life "harder and harder" to maintain.

"I had five admissions to the hospital and emergency department in three months," she told Newshub.

"I used up all my sick leave from work. I tried to get a Mirena [an uintrauterine device] put in, which resulted in another admission to the emergency department."

And then a friend who has cancer shared some of his high CBD cannabis pills with her.

"That was life-changing. It meant I wasn't in so much pain and could get up and do stuff."

Doris' friend recovered, and her supply dried up, so she started vapourising cannabis.

She says she would prefer to just take it in pill form, and to know the strength of the cannabis' active ingredients - but in a black market, that's just not possible.

Doris is far from the only endometriosis sufferer turning to cannabis for relief.

Others in the endometriosis community told Newshub that adults with the condition frequently experiment with cannabis to deal with the pain.

They are careful to emphasise the word 'adults', because endometriosis can start with a girl's first period. They could be just 11 or 12 years old.

Of the 400 or so cases on Medicinal Cannabis Awareness New Zealand's database, around a dozen say they are dealing with endometriosis, coordinator Shane Le Brun told Newshub.

"It's a moderate pain reliever," he said. 

"Research says it's not as good as [prescription opioid pain reliever] oxycodone. Of course it's not. It has moderate relief in chronic pain - the kind of pain where nothing touches the sides anyway."

Officials in the health system are cautious with medicinal cannabis.

Clinicians "want to know what the active ingredients are, what form and dosage is more effective, its interaction with other medicines," the Ministry of Health said in a briefing to former Health Minister Jonathan Coleman. 

"For many patients the level of improvement from a cannabis-based product is similar to that achieved via other newer pharmaceutical treatments."

Text reads: Quick facts: Medicinal cannabis - It is currently illegal to use raw cannabis for pain relief - It is very expensive to buy pharmaceutical cannabis products. They are imported from overseas and are not subsidised - Cannabis is used by many to treat chronic pain, nausea and multiple sclerosis - Risks including feeling slow, paranoia and anxiety - but the NZ Drug Foundation says there are risks associated with most medicines
Photo credit: Newshub.

Deborah Bush from Endometriosis New Zealand (ENZ) told Newshub the fact that endometriosis is a women's condition is a huge part of the issue.

The condition can take years to be diagnosed and women speak of having their pain downplayed as a normal part of the menstrual cycle.

"With no cure and limited access to best practice treatment and management of the disease, ENZ is aware that some women turn to cannabis to control their pain and for respite from the persistent negative effect it can have on their lives and well-being," said Ms Bush.

But Ms Bush believes the use of cannabis can become "a much less pressing issue" if societal inequalities and gender bias in the treatment of endometriosis are addressed.

"ENZ believes that the focus in endometriosis care should be on ensuring women have access to the care and treatment they need, that symptoms are recognised early and treated appropriately, that the associated societal issues and gender bias is addressed."

Pharmaceutical cannabis is currently available for some New Zealanders but is prohibitively expensive. A month's supply can cost $1000.

That could change under a new law currently passing through Parliament, which was supported through its first reading by every member of Parliament.

The law will allow a medical cannabis industry to start up in New Zealand, which will likely produce considerably cheaper local products than the current imports.

The law will also see current requirements for prescribing medicinal cannabis reviewed. Depending on how that progresses, that could mean medicinal cannabis will be available - and affordable - for those with conditions like endometriosis.

It will take a while for that industry to develop, so the Government is creating a stopgap legal defence that will allow people with terminal illnesses to use cannabis in the last year of their life.

Medicinal cannabis advocates with long-term painful conditions hope the legal defence will be widened to allow them to also use cannabis.

At or by 2020, New Zealanders will vote in a referendum to decide on legalising the personal use of cannabis, which could drastically change access to medicinal cannabis for those with chronic conditions.

*Identities have been protected for this article.

If you or someone you know needs help cutting down on marijuana, contact Alcohol and Drug Helpline 0800 787 797.