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double stigma: using cannabis to treat endometriosis
"the future of access for women, the future of medical cannabis, i think, lies in ensuring that we have a voice and we share our experiences.”
mar 29 2021
7 minute read
ashleigh brown says endometriosis is still something that is dismissed.
photo courtesy ashleigh brown.
this story first appeared in weekend dispensary, a weekly newsletter from the growthop. signup now to get a story delivered to your inbox every saturday.
ashleigh brown found little relief from epilepsy in traditional medicine.
in the summer of 2016, brown was going on seven years of experiencing up to 180 seizures a month when a friend suggested she try something unconventional.
brown’s friend was treating some of her symptoms of lyme disease with cbd oil and she wanted her to give it a chance. while brown was initially dismissive, her friend told her to forget what she knew about marijuana and to think of the oil as medication, rather than recreation.
brown tried a small dose and in the 24-hours that followed, she didn’t experience a single seizure.
“it’d been seven years without relief and then overnight, all of a sudden, we saw the potential of this medicine,” brown tells the growthop from winnipeg.
brown followed up with her doctor, who put her in touch with a local cannabis clinic. her experience at the clinic was great, she says — there was no stigma or judgement. but there was a general lack of information.
at the time, there were only a few producers making cannabis oil and brown wasn’t sure which formulations might work the best for her condition, or how much oil she should be taking. “i was kind of left to my own devices,” she says.
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that gap in information drove her to establish shecann, a digital community where canadian women can share insight, resources and their experience with medical cannabis. since launching in 2017, shecann has grown to more than 5,000 members.
that community is where brown first learned that medical cannabis could be used to treat another condition that she has: endometriosis.
endometriosis is defined by the vancouver-based world endometriosis society (wes) as a disorder in which “tissue similar to the lining inside the uterus is found outside the uterus, where it induces a chronic inflammatory reaction.”
it can lead to lesions and cysts and other growths, as well as infertility and medical complications.
according to wes, endometriosis affects an estimated one in 10 women. the condition also presents differently across patients and can affect other systems of the body, beyond the reproductive system.
for brown, her symptoms came on quickly and the pain was debilitating.
in the shecann community, she learned other women were applying cannabis topicals on their abdomens or using cannabis oil internally or taking edibles to treat their symptoms. she began experimenting and learned a 1:1 thc/cbd oil seemed to offer some relief, as did certain cannabis cultivars, particularly those high in myrcene, a cannabis terpene that may help reduce pain and induce sleep.
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“without that community, i may have never really explored the potential of cannabis for endometriosis,” brown says. “it was an unexpected gift to be able to find the lived experience of so many other people.”
the conversations also touched on other aspects of endometriosis, including the double stigma that accompanies using cannabis to treat a heavily gendered condition.
“endometriosis is still something that is dismissed,” brown says. “women are told that when you get pregnant, your symptoms will disappear, so they should have a baby. they’re told ‘it can’t be that bad’ and that they can just go on birth control or other methods.”
there is no known cure for endometriosis, though surgery can be conducted to remove scar tissue and endometrial tissue but it is not always effective in providing a long-term solution. according to the american college of obstetricians and gynecologists , endometriosis symptoms can return in up to 80 per cent of people within two years of surgery.
patients are often forced to advocate for themselves, brown says, to illustrate how impactful and painful the disorder can be. “having to put that forward, and then on top of that, saying, ‘hey, i found this medicine that works for me’ and being dismissed, it’s really kind of carrying a dual burden that is very unique to the condition and to that choice of medical cannabis,” she says.
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brown highlights the work the non-profit endometriosis network of canada (enc) is doing to bring more information to light about the disorder. the organization often refers patients to shecann who are facing “that exact double stigma.” the community offers a space for women to discuss how they are managing the condition and share tips on how to approach doctors about using cannabis as a therapy option.
“they are trying to get a diagnosis or they’re trying to advocate for better care and they found that [cannabis] works and now they’re trying to make a case for using it,” she explains.
dr. mark ware, chief medical officer for canopy growth, says that the experience of facing a dual stigma with cannabis and endometriosis is something that is heard “all too commonly.”
“you add stigmatization to the problem of chronic pain, and it’s just like lemon on the wound,” he says. “now you not only have a condition and pain and your health issues, but you have this issue of stigma of the disease and stigma of the drug you’re trying to use to treat it.”
formerly a pain management clinician at mcgill university, dr. ware says another obstacle patients face is the fact that endometriosis can be difficult to diagnose.
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according to the enc, the length of time it can take to receive a proper diagnosis is
“ one of the worst aspects of living with endo .”
“ it’s not just a few weeks or months where people are living in the unknown; people live for years, sometimes decades, without support or knowing the cause of their life-altering symptoms, ” enc writes in a blog.
healthcare providers can miss signs and symptoms of the disorder, especially when it presents in less traditional ways, and patients can end up being funnelled through seemingly endless tests and doctor visits.
“it can take patients a long time before they get in to see the right specialists and have the right procedures to make a formal diagnosis,” dr. ware says. “and then there’s the challenge of what you do to manage the pain. even if you now have the diagnosis, there are limited treatment options.”
at mcgill, dr. ware says a number of patients reported using cannabis for various abdominal pain syndromes, including endometriosis.
“we’re certainly aware that patients are self-medicating with cannabis to try to relieve the pain of endometriosis,” he says. “of course, the big challenge is, is there data to support that from a classical pharmaceutical perspective? and, unfortunately, we don’t have strong clinical data that we can use to actually prove that the benefits outweigh the risks.”
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he adds that the stories shared by brown and other women in the shecann community are a call to action for the medical community. there’s
“reasonably good” scientific rationale as to why cannabis may help treat endometriosis, he says, but more research is needed.
“we know that the uterus and muscle of the uterus contain cannabinoid receptors, we know that it affects smooth muscle function, how and why cannabinoids might help endometriosis specifically, still needs to be explored,” he explains.
earlier this month, researchers at queen’s university were awarded a grant of nearly a million dollars to investigate the role of “endocannabinoids in endometriosis pathophysiology and determine efficacy of cannabinoids as a novel therapeutic modality.”
and while that research could help to better understand the role of cannabis in treating endometriosis, dr. ware adds that there is still work to be done to break down barriers between patients and doctors when it comes to discussing cannabis as a treatment option.
“we need clinicians to be able to talk to patients openly about if they wish to try cannabis,” he says. “how should they access it? what kinds of things should they try? that’s really a journey that a health professional and patient have to go on together in the absence of hard quality clinical data.”
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for brown, she says she’s not only an eternal optimist but relentless. she believes that better days are ahead when it comes to accessing information about medical cannabis and treating endometriosis.
“there is more research, post-legalization. there are more opportunities to dialogue, there’s less stigma associated, so people speak more freely, we see more mainstream media coverage about it, and more emerging studies that kind of give us an idea of where we should be spending our time,” she says.
she adds that greater access to telemedicine and mainstream platforms like medical cannabis by shoppers are also helping to legitimize medical cannabis and open up conversations.
“it’s never a slam dunk with medical cannabis,” she says. “the first strain you try and the first method of ingestion you try isn’t necessarily going to be the answer to managing your symptoms. so access to a diverse amount of formats and different products in one place can really empower people to feel like there are more options available now than ever.”
brown also notes that women like those in the shecann community, who have been making their own topicals and edibles and creating their own suppositories, are another indication to the cannabis industry and the research community that they need to listen to women. there are people with lived experience, who are eager to share.
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according to brown, 95 per cent of shecann members have indicated that they will participate in clinical trials, research studies and product development.
she doesn’t claim that cannabis is a cure-all, and she still experiences about 15 to 30 seizures a month, but it has restored her quality of life, she says.
“i’m really excited for this community and for canadian women to have a voice in the future of medical cannabis because we have a long way to go in terms of really dialling in the treatment and having success faster instead of having so much trial and error,” she says. “the future of access for women, the future of medical cannabis, i think, lies in ensuring that we have a voice and we share our experiences.”
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