Erin Ross Coward can’t count the number of times she’s ended up in hospital with pain so extreme she’s had to have intravenous injections of morphine. The Vancouver resident has a case of endometriosis so severe that doctors told her not to bother going to university: they figured she wouldn’t be able to keep up because of the condition’s debilitating effects.
Coward did complete her bachelor of arts degree, but she admits it wasn’t easy.
“I’m in and out of hospital,” Coward says in a phone interview. “There are days when I don’t want to get out of bed or can’t really function. I can’t do the same things that most 26-year-olds can do: I can’t go out and pull an all-nighter.
“It’s like having the worst period you’ve ever had every day of your life,” she adds. “I’ve had situations where I’ve hemorrhaged out in public. It’s so embarrassing: it’s like peeing your pants in public but you’re bleeding through your pants. It’s awful.”
She remembers being in high school and throwing up when she got her period because the pain was so intense. It took several hospital visits before she was diagnosed with endometriosis, in which tissue similar to the lining of the uterus (the endometrium) grows in abnormal locations throughout the pelvic cavity, such as the ovaries, the fallopian tubes, and even the bladder and bowel.
During a regular menstrual cycle, the endometrium builds up and is shed if a woman doesn’t become pregnant. With endometriosis, the misplaced tissue—which is variously referred to as lesions, nodules, cysts, or growths—builds up and breaks down too but can’t be shed, resulting in the formation of scar tissue or internal bleeding.
The most common symptom of endometriosis is pelvic pain. Others include painful periods, painful sex, lower-back pain, irregular or heavy bleeding, diarrhea or constipation, fatigue, nausea, dizziness, and an inability to become pregnant. According to the World Endometriosis Research Foundation, about 30 to 40 percent of women with endometriosis are infertile.
There’s no cure for endometriosis, and medical professionals are puzzled as to its cause.
Vancouver gynecologist Christina Williams, who works out of the UBC Centre for Reproductive Health at Vancouver Hospital and B.C. Women’s Hospital’s reproductive medicine program, says that the condition baffles.
“It’s a huge problem. The disease is very complex and chronic, and although it’s been studied for a long time, unfortunately research has never been able to provide a clear answer as to why it starts,” Williams says during a phone interview between surgeries. “What is clear is that it causes extraordinary suffering.”¦There is a desperate need to better understand the disease, its progression, and targeted therapies.”
The only way to diagnose endometriosis is through a laparoscopy, an invasive procedure in which a thin, telescopelike instrument is inserted into the pelvic cavity via a small cut near the navel. A biopsy of the endometrial tissue that’s extracted confirms the diagnosis.
Williams says women with the condition tend to feel isolated because it’s still considered taboo to discuss problems related to female reproductive health. Plus, women are often told by doctors or peers that painful periods are normal.
“A lot of women are denied their suffering,” Williams says.
Catherine Allaire, a gynecologist and clinical associate professor at the UBC Centre for Reproductive Health, agrees that the condition is all too often overlooked.
“If a teenage girl has to miss school at period time because of debilitating pain, that’s not normal and needs to be addressed,” Allaire says in a phone interview. “There’s a remarkable lack of information about endometriosis. It’s not a cancer, it’s not deadly, there’s not a lot of funding for research, but it has a huge impact on women’s quality of life. Women suffer in silence a lot.”
Both Williams and Allaire say there’s hope for women with the condition, and that treatment can take many forms.
Medications, which are usually a first course of action, can be prescribed to control pain, reduce inflammation, or regulate hormonal levels. Sometimes women are given low-dose birth-control pills that suppress menstruation. An intrauterine device can have the same effect.
Surgery is another approach. Doctors may remove just the affected tissue, one or both ovaries, or the uterus itself. If any lesions exist outside the uterus, though, the disease can recur.
The success of each treatment varies as much as symptoms do from person to person. Coward, unfortunately, hasn’t had much luck. She’s had four surgeries to remove scar tissue and cysts, has taken all sorts of medicines, and has tried an IUD, which only caused her more pain. Because her endometriosis is present outside of her uterus, a hysterectomy wouldn’t rid her of the disease. Some doctors have suggested she get pregnant to slow its progression.
“That’s not at all realistic,” she says. The irony is that she’s always wanted children. The more the disease spreads and the more time that passes, the lower her chance of conceiving.
“I’ve tried everything in the book, and nothing has helped,” says Coward, who has used Chinese medicine, yoga, meditation, and massage to relieve her suffering. “The pain is constant.”
She says the condition has affected her emotionally.
“I’ve been pretty depressed at times,” she says. “It’s been a really rocky road. But I’m trying to put that aside and live a normal life.”
She says a strong support circle helps her cope, as does a health-care team that includes her family doctor, a gynecologist, a psychologist, a spiritual healer, and an acupuncturist.
The World Endometriosis Research Foundation is supporting various educational campaigns around the world throughout March. Coward herself wants to raise awareness of the condition. To that end, she started a blog at endendobc.blogspot.com, which she writes with her mother, who’s a nurse. Coward says she wants to connect with other women who are dealing with chronic pain, particularly in light of the fact that there’s no Vancouver-based endometriosis support group.
“I really want other women to know they’re not alone, because I’ve felt that way,” Coward says. “I want to connect with other people, and I want to get people talking about it.”