At 26, Mercy Okalowe was not ready to have the heart of her reproductive system cut out.
She hoped to start a family one day, but abnormal monthly bleeding and a possibly malignant, cantaloupe-sized tumour inside her uterus had already gotten in the way of her career.
Four Toronto gynecologists told Okalowe the only remedy
was a hysterectomy — one of the five most-performed but least talked-about surgeries in Canada. More than 40,000 Canadian women lost their uteruses to the invasive procedure in 2012-2013, according to data released last week by the Canadian Institute for Health Information.
Torstar News Service
“It just seemed too extreme,” said Okalowe, a public relations consultant. “I thought, what if I want to use that equipment? Have kids? The timing seemed all wrong. It’s the 21st century; there has to be an alternative.”
There are, but statistics suggest the surgery, which involves removing the uterus and sometimes the fallopian tubes and ovaries as well, is being over-prescribed in Canada at an alarming rate, at a time when many women are having babies later in life.
“I am concerned about the rate of hysterectomies,” Dr. Jennifer Blake, chief executive officer of the Society of Obstetricians and Gynaecologists of Canada, told the Star.
“Were these women given other alternatives? We just don’t know. Sometimes a hysterectomy is the only option, but most often there is something else you can do.”
At the other end of the spectrum, an increasing number of senior women are suffering genital prolapse, meaning their uterus is slipping out of their bodies. For many, hysterectomy is the only option. But operating rooms are clogged, and some women wait up to two years for the surgery.
The society of obstetricians and gynecologists is starting to question how many of these procedures are being performed unnecessarily. And it is urging physicians to stop using the surgery as a cure-all for pelvic health problems.
Last year, the society revised outdated guidelines on treating abnormal uterine bleeding, a condition that affects nearly one-third of all Canadian women.
“We’re very clear that (less-invasive) options should be considered before doing a hysterectomy,” said Dr. Sony Singh, an Ottawa gynecologist who rewrote the guidelines. But national surgery data suggests his peers may not be getting the message.
Lori Dennis spent two “frustrating, upsetting and lonely” years trying to find a doctor who agreed her uterus was worth saving.
The Toronto psychotherapist cycled through four gynecologists in Toronto and other specialists in New York and California.
“Most looked at me like I was insane,” she said. One compared her womb to a “rotten baked potato” that needed to be thrown out. Fibroids — benign tumours — had attached themselves to her uterine wall, causing extremely heavy menstrual periods and anemia.
It’s been three years since Dennis found a gynecologist at Sunnybrook Health Sciences Centre who agreed to help save her uterus; someone who would perform a myomectomy, removing only the fibroids that seemed to be the root cause of her epic bleeding.
“I’m very happy I was able to stay the course,” she said. “Doctors need to be shaken out of their complacency.”
The anemia is gone. Her periods still arrive monthly but the flow is dramatically reduced. “It’s completely normal,” she said.
Singh is one of only a few Canadian doctors practising minimally invasive gynecology. In 2007, The Ottawa Hospital recruited him as director of its women’s health centre department.
Since then, he has been advocating for alternatives to the “big-cut approach.”
The hospital reduced its annual number of hysterectomies to 520 in 2012, from 694 in 2005.
When a hysterectomy is indicated, a minimally invasive technique, which often relies on tiny incisions and the use of special cameras known as laparoscopes, takes more time than a traditional hysterectomy. Yet data released to the Star suggests it’s actually cheaper.
Across Canada, the total cost for hysterectomy-related hospitalizations exceeded $190 million, a 2010 CIHI report shows.
The Ottawa Hospital calculated that doing minimally invasive hysterectomies saves the hospital roughly $200,000 a year. Per patient, an open hysterectomy that involves deep cuts and longer recovery times costs $7,241, while a laparoscopic procedure costs $5,637. The figures will be presented at this week’s annual, national conference of obstetricians and gynecologists in Niagara Falls.
Yet, “most women who do need a hysterectomy are having a big cut and needing a longer recovery,” Singh said.
Holly Bridges, the Ottawa author of The UnHysterectomy, about her search to find high-tech, minimally invasive options to deal with heavy periods, said women need to know there are options.
“Nobody wants to talk about this issue because it has to do with ‘Eww, yucky periods.’ But we’re not just talking about periods, we’re talking tumours the size of basketballs; we’re talking about pain, lost productivity,” Bridges said.
“More and more women are doing their homework, and they’re becoming a pain in the ass (for doctors),” she said. “That’s almost the way it has to be nowadays, especially for reproductive health.”
But with limited access to less-invasive treatments, some women simply cannot afford to keep their uterus, Blake and Singh said.
Alternative treatments and medications known to be effective alternatives to major surgery are not universally available. While Ontario covers the cost of surgically inserting an intrauterine device that will reduce bleeding and pain, it does not cover the cost of the device itself, which can run upwards of $400.
By treating more women through medications, devices or minimally invasive procedures that can be performed outside hospitals, operating room time can be freed up for cases involving cancer and female genital prolapse, where hysterectomy is the best or only option, Blake said.
Blake says she’ll be asking the society’s patient safety quality of care committee to review the Canadian hysterectomy rate. She also wants Health Quality Ontario to examine practice variations across the province.
Canada-wide, rates range from a low of 311 per 100,000 population in B.C. to a high of 512 per 100,000 population in PEI.
“Substantive rate variations signal a lack of consistency in patient treatment and suggest room for improved care,” a 2013 CIHI report on health system characteristics stated.
Convinced she would eventually find a doctor who could help her keep her reproductive options open, Okalowe chose to live with heavy bleeding and intense pain that led to several hospitalizations. She found Singh after a family friend saw his work featured in a Canadian magazine.
It has been almost four years since the Ottawa gynecologist removed the cantaloupe-sized fibroid and another smaller one from Okalowe’s uterus through a laparoscopic myomectomy. Both tested negative for cancer.
“It all worked out really well,” she said. “My bleeding is much lighter than it’s ever been. My cramping is much less than it’s ever been.”
There is a possibility the tumours will grow back, a reality she’s working on dealing with. In the meantime, she hopes more women feel emboldened to talk about their pelvic health.
“I don’t think there is any shame around it,” she said. “How else do we create change? How else do we get better? How else do we get healthier?”