Bleeding. Cramping. Nausea. Headaches.
For those who experience the natural, ideal period, these symptoms happen once a month, for about three to seven days, and leave once their time is up.
For those with endometriosis, however, these feelings are painfully amplified, and they may hang around longer for some months, and not show up at all during others. Bleedings come with a heavy side of blood clots, cramping feels like a knife stabbing your ovaries, and nausea from the pain becomes so crippling, you can’t walk normally without doubling over.
Typically, tissue known as endometrium encases the walls of the uterus. Instead, in the case of endometriosis, which is a reproductive illness, this endometrial-like tissue grows outside of the uterus as well — and may even exist on organs beyond the pelvic area.
According to EndoAct Canada, there are at least one million people in the country who suffer from endometriosis. Additionally, on average, those Canadians wait five years for a firm diagnosis, which can be extremely validating to receive. As the condition is one that is chronic and invisible to everyone on the outside, endometriosis can feel burdening, but relieved with a professional’s medical attention.
However, its status as this ‘invisible’ disorder is exactly what challenges doctors and their ability to make connections to endometriosis. Having periods comes with the typical cramping, but the regular level of pain pales in comparison to the cramping endometriosis sufferers experience. Dysmenorrhea, which is the medical term for painful periods, can extend to other parts of the body besides the pelvis, such as the lower back and abdomen when it originates from endometriosis.
Painful intercourse is a frequent occurrence for those with endometriosis, as pain during ovulation is another unfortunate bonus to the endometriosis experience, and this tends to happen on one side of the pelvis before an egg is released 14 days before a period.
Ashley Deegan, a Montreal-based physiotherapist at a clinic for pelvic floor therapy, meets regularly with people who have endometriosis, helping them manage their pain when it comes to penetration or urination. “Normally, their pain can be debilitating. They take off work, they take off school, they can’t get out of bed — they can’t do anything,” says Deegan, explaining how varied endometriosis presents in individuals. “Often, they’ll have bowel, bladder, sexual issues as well. So, like pain during intercourse, and they could have pain with bowel movements … things like going to the bathroom all the time to urinate or have pain [when urinating].”
The only way to see tangible evidence of endometriosis is through laparoscopic surgery, Deegan explains. “If someone presents with all the symptoms that are consistent with endometriosis, some [doctors] are going to go with assuming that you have endometriosis,” she says. “Because whether they have it from doing the surgery and you see it or if you don’t, you’re still going to treat someone the same way.”
Laparoscopic surgery remains the gold standard for visualization of endometriosis and consequentially, its diagnosis. In a study published in the Journal of Obstetrics and Gynaecology Canada, researchers reviewed the cases of 96 women who underwent laparoscopic surgery between April 16, 2016, and March 31, 2017, after presenting with symptoms of endometriosis. An endometriosis diagnosis was made for 82 per cent of the patients, with the sensitivity of laparoscopic visualization at 90 per cent.
Though its accuracy is indisputable, as Deegan mentions, presenting with symptoms still calls for medical treatment, as much that is possible in making the patient as comfortable as possible while living with endometriosis. “No matter what treatment they’re in, there is nothing that cures endometriosis. It is something that is managed,” she says.
Deegan says many patients of hers are prescribed hormonal birth control that influences hormone levels and lessens the symptoms of endometriosis. But unfortunately, these tend to replace their original symptoms with side effects that become an obstacle in the person’s day-to-day. These include weight gain, nausea, and headaches. Long-term and riskier side effects are a higher likelihood of blood clots and some cancers, such as ovarian or breast cancer.
“There’s two types of surgeries they can do – ablation surgery or excision surgery,” adds Deegan. During ablation surgery, endometriosis adhesions are burned off, while excision surgery involves, as it states, the excision of adhesions that can be seen. Both of these treatments, Deegan says, don’t completely fulfill the pain-free experience that the patient would be seeking.
“Even if you go and take out the lesions, no one told the body’s nervous system that, ‘okay, danger is gone and now everything’s fine.’ People will get surgery and their symptoms are the exact same after or they get even worse after their body is still all hyped up and oversensitive,” she says. “The muscles have become more tense … because when you’re in pain, you tense up. So, it’s like the whole body is in this protective-holding-itself response, and we can’t just tell ourselves to let go.”
Cassandra Earle, a Toronto-based journalist, runs an Instagram account bringing awareness to endometriosis and other reproductive conditions that she faces. “I wanted to let people know they weren’t alone,” she says. “I wanted to share my experience and connect with others, and I wanted to see someone my age, who was figuring out how to attend university and date people, all while managing my condition.”
“I’ve known for my whole life that I could have endometriosis … I experienced painful periods from my very first one at 12 years old that didn’t improve with medication or time,” she says. “It was hard because I was so young. The most relief I got was from surgery, but that’s not the case for everyone, so my doctors were cautious and wanted to try everything else first.” Her Instagram, which showcases her personal insights as someone living with such conditions, currently boasts a 15.2k following.
In Earle’s case, her doctors have been willing to provide her with treatment and listen to her concerns. For many people with endometriosis, however, there is a common experience in which the severity of their symptoms is downplayed and undervalued.
“So many patients that we see feel like they were brushed off with it because their doctor wasn’t really taught about endometriosis,” says Deegan. “Well, just because you don’t learn about something in school doesn’t mean that you’re just kind of given an excuse to never learn about it ever.”
A 2020 study that examined patients’ reports of misdiagnosis in the United States revealed that around 75 per cent of patients were misdiagnosed, with 95 per cent reporting being misdiagnosed with a different physical health issue and 50 per cent with a mental health issue. About 53 per cent of patients were misdiagnosed by a gynecologist, a doctor who specializes in female reproductive health.
The lack of medical knowledge and support for endometriosis research traces back to underfunding, as well as gender inequity toward patients.
In a 2021 report written by obstetrics researchers at the University of British Columbia, it was found through the Canadian Institutes of Health Research Funding Decision Database that “endometriosis-related projects received only $7.3 million in the past 20 years — just $7.30 per person estimated to be living with endometriosis in Canada today.”
To Deegan, she believes most in the lack of care towards women’s medical challenges, and the factor it plays in the underdiagnosis of endometriosis, saying “if there was a condition that was affecting the quality of life, to such an extent in men … it would have been studied so much more. It’s easier for researchers to exclude women from studies because then you don’t have to worry about the menstrual cycle and how that’s playing a role.”
Earle says there’s a lack of awareness in all aspects of the public and not just in the medical field. “I think early intervention is the best way to go. Teaching young people about this in school during sex ed or health courses could help a lot of people,” she says.
“I think I have been fortunate in receiving really wonderful care for much of my life, but that wasn’t always the case … as someone who lives with endometriosis…more discussions on the subject would have benefitted me, especially as I was first being diagnosed.”