For most of her adult life, Squamish's Robyn Kelly has planned her schedule around endometriosis.
The digital marking specialist won't go camping, for example, if she knows there's a chance she could get a flare-up while away.
Even with careful planning, however, the disorder has still managed to ruin what should have been enjoyable experiences.
She recalls a night — pre-pandemic — when she had box seats at a Canucks game with clients, and then the pain started.
"I was ready for a night of networking and having a good time, and literally half an hour after we had gotten there, I started getting these jabbing pains," she recalled. She asked a friend for a painkiller.
"I was in and out of the bathroom for 45 minutes, trying to compose myself," she said, adding she kept telling herself it was going to be fine.
It was not fine.
Kelly, 35, has experienced the pain of endometriosis since she was a teen and struggled for 10 years to get a diagnosis.
Often, doctors and others dismissed her complaints.
"The biggest thing was, 'Oh, you are just one of the unlucky ones. A lot of women live with this,'" she recalled. "It was just so brushed off all the time."
It took coming back to Squamish from the city to see Dr. Richard Cudmore about a decade ago, to be taken seriously, and sent to a specialist, Kelly said.
"Endometriosis occurs when tissue similar to the lining of the uterus implants abnormally outside of the uterus in the pelvic cavity to form lesions, cysts, nodules and other growths," according to the Endometriosis Network Canada.
Every person is different, but common symptoms include severe and long-lasting menstrual cramping — different from typical period cramps — painful intercourse, painful urination or bowel movements and lower back, abdominal pain, or chronic pelvic pain, according to the Society of Obstetricians and Gynaecologists of Canada.
Kelly describes her pain as like a chainsaw ripping through her that starts with a sharp pain in her lower abdomen.
"It is just like jabbing, knife-like sharp pains. It feels like there is so much turning and churning and jabbing in your stomach that you just can't think of anything else," she said.
"When it is a really bad flare-up, it is like every step that you take, it hurts. You don't want to cough, laugh, sneeze, get off the couch. Even going to urinate hurts."
Six months ago, Kelly had her second surgery at BC Women's Hospital to reduce lesions.
It is something she will likely do every five years to deal with her condition.
The recent surgery definitely helped, she said, noting her day-to-day life is much less dominated by the disorder.
But she still gets flare-ups.
While it won't bring immediate relief, new research out of Simon Fraser University will be of interest to those in Squamish and beyond who suffer the debilitating pain of endometriosis.
What is new?
Simon Fraser University researchers have developed a new theory that suggests the previously overlooked hormone —testosterone — has a critical role in the development of endometriosis.
Endometriosis and polycystic ovary syndrome (PCOS) each affect up to 10% of women.
"Endometriosis shows evidence of being caused in part by relatively low testosterone during fetal development, that 'programs' female reproductive development. By contrast, polycystic ovary syndrome is associated with relatively high testosterone in prenatal development. These two disorders can thus be seen as 'opposite' to one another in their major causes and correlates," reads "The evolutionary biology of endometriosis," one of the two SFU studies recently published in the journals Evolution, Medicine and Public Health, and Evolutionary Applications.
"Testosterone is as important in women's reproduction as it is in men's in terms of the levels needing to be within a particular range, especially within the ovaries, but also within endometrium [the innermost lining layer of the uterus]," said SFU biological sciences professor Bernard Crespi, a Canada Research Chair and co-author of the new studies with graduate student Natalie Dinsdale. "If any of the levels in those two areas are too high or too low, then there are various forms of dysregulation."
Near the end of the first trimester or so, the reproductive systems of the fetus are developing.
"The way that they develop initially has very strong impacts on how they end up," Crespi said.
Polycystic ovary syndrome, which can cause symptoms such as irregular or nonexistent periods and difficulty getting pregnant, weight gain, and excessive body hair, is mainly caused by excess testosterone in the fetal stage, Crespi said.
While interesting, what does all this information mean in the here and now?
The potential usefulness of the research would come from more informed diagnosis and treatment, according to Crespi.
"What the research is mainly useful for is the ability to predict endometriosis and then the ability to have a rational basis for new types of therapies," he said. "And from having a clear model for what is the main cause of the condition and that gives people a new way to think about it. There are all sorts of experiments you could do and it tells you what data you should collect. It guides research programs for people working in the area."
Change comes slowly, but this research can contribute to eventual shifts, Crespi said.
"Once you get a critical mass of people who say, 'Oh, this is useful for our patients and for publishing papers' and then things start to happen," he said, adding that researchers presented the findings at Women's Hospital.
"This has the potential to be immediately useful at least in empowering women with more information about the causes of the condition, and I think that is very important as well."
What can expectant moms do?
What causes the testosterone differences in expectant moms is not well understood.
It tends to run in families, Crespi said.
"One of the factors that is known to be important in that early stage of development is the endocrine-disrupting compounds...these are compounds that are pro-estrogen and or anti-testosterone," he said.
"Certainly, something people can do is keep away from bottled water and plastics and keep away from anything people think is any risk of having some endocrine-disrupting chemical. I think that is generally a good idea anyway in regard to a whole bunch of different diseases."
The other consideration is that the testosterone in the fetus of a girl will be the function of the testosterone levels of the mother, to some degree, and so what that means is you can get a trans-generational effect.
"If your mother has low testosterone, this will make it more likely in the offspring," he said.
What is next?
Crespi and his team currently have two more papers under review that follow up on the original research.
More papers are in the pipeline and there are plans to gather more data.
"They way to have more of an impact is to keep putting papers out there, once there are enough of them in good journals, people will say, 'This is not just a one-off speculative something or other, this is a model that makes very clear predictions that are testable and that have clear impacts for treatment."
If you are suffering
For women suffering today, talk to your Squamish doctor. You may be able to get a referral for BC Women's Hospital for the Centre for Pelvic Pain & Endometriosis.
Kelly says the biggest thing is to advocate for yourself.
"Stand up for yourself," she said. "Write everything down when you go to the doctor and don't leave until you have all your questions answered."