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Who am I without my uterus? The psychological, social, and cultural stigmas of hysterectomy

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Ask4UFE.com
By Alicia Armeli

A uterus can embody many things. For some women, it provides a sense of self, gender identity, and sexual prowess. For others, it signifies fertility and can even dictate a woman’s cultural desirability. And still, hysterectomy continues to be one of the most common gynecological surgeries performed worldwide.1

But women are speaking out. Stories of psychological, social, and cultural stigmas experienced by hysterectomized women are surfacing—many of which reveal the residual costs that have left some to question who they are now and how they can relate to the world around them post-hysterectomy.

At the time, I had no idea what was happening to me,” recalled Lise Cloutier-Steele, whose own hysterectomy and bilateral salpingo-oophorectomy at age 38 spurred her to write the book, Misinformed Consent: Women’s Stories About Unnecessary Hysterectomy. “In my interviews, I was hearing the same things. A common thread between the hundreds of women I spoke to were feelings of betrayal. We weren’t told what would happen after the surgery.”

And experts agree. The experiences of women who undergo hysterectomy have not been given adequate attention—especially in the area of how reproductive organs can provide a sense of identity to women.

Gender identity is one of the most fundamental means by which individuals are recognized, both by others and by themselves,” explained Dr. Jean Elson, PhD, MA, MEd, Sociologist and Senior Lecturer Emeritus for the Department of Sociology at the University of New Hampshire. “It is our core inner feeling of who we are as women, men, both, or neither.”

In Elson’s research, as discussed in her book, Am I Still a Woman? Hysterectomy and Gender Identity, she found that gender identity is produced through personal embodied experience. Depending on the culture and the individual, this gender identity could be affected if a woman experiences changes to her body. “Most women in my study found hysterectomy a crisis that prompted them to examine the connection between sexual reproductive organs and gender identity.”

Although the uterus itself is only a fraction of a woman’s gender identity, its presence—or absence—is part of how she relates to the world around her. This is especially true concerning her intimate relationships. The quality of relationships plays a significant role in whether a woman is able to maintain or reclaim gender identity after surgery.2Elson explained that romantic partners could either reinforce or calm a woman’s fears surrounding the loss of sexual attractiveness post-hysterectomy.

Sexuality is often a basic component of feminine gender identity,” explained Dr. Elson. “Some respondents found they no longer felt they measured up to appropriate cultural standards for sexual attraction, including maintaining a youthful appearance, a slim figure, and physical flawlessness.” Women who expressed concern regarding diminished sexual attractiveness were predominantly heterosexual. In addition, several women of differing sexual orientations perceived changes in their own sexual desire or response as a result of hysterectomy.

A woman’s perception of losing sexual attractiveness is compounded when sexual dysfunction becomes a reality following surgery. Earlier this year, one study3 found that some women who underwent hysterectomy for benign reasons experienced sexual dysfunction and increased depression.

These findings sounded all too familiar to Ms. Cloutier-Steele. Depression—due to loss of sexuality—was a common finding in her interviews. “No one asked us what sex was like before the surgery. No one explained that if they remove the cervix, the vagina will be shortened. And for those women who enjoy deep uterine orgasms, you can’t experience that anymore. It was devastating after the fact.” Patient information such as this is crucial since factors such as sexual function are significant predictors of hysterectomy satisfaction.4

Sexual dysfunction can be damaging to women in the healthiest of relationships but can hold even higher stakes for those who live in patriarchal societies where childbearing is highly valued and a woman’s role is to please her husband sexually.

Most of the women I interviewed accepted strong cultural beliefs that motherhood is an essential component of women’s identity,” Elson explained. “Loss of reproductive organs created insecurity regarding gender identity for those women, including women who had already borne children or were past menopause.”

This ideation is prevalent in Middle Eastern countries and corresponding cultures where a woman’s value, social status, and self-esteem are linked to her ability to have children. Childbearing is perceived as a family commitment.5 If a woman cannot bear children, divorce is justified. High rates of anxiety and depression have been observed—even in menopausal women.6

In the Latin American world, women face similar hardships. Machismo7, a concept of extreme masculinity and unquestioned authority, places women in a subservient role. In such cases, a woman’s body is considered only for the enjoyment of men and changes to it, as seen with hysterectomy, can prove damaging to intimate relationships.

A study published in Health Care for Women International7 found that Mexican men who adopted the machismo role believed that without a uterus, a woman would be “incomplete, empty, her femininity adversely affected” and “she would have problems with her partner.” Mexican women reported feeling anxious around a procedure that would threaten their role and that may cause men to leave and seek sexual satisfaction elsewhere.

This harsh reality is not one that exists solely outside the US. A qualitative study8found that African American women were aware of the social stigmas associated with hysterectomy in the black community. Several African American women reported keeping their surgery a secret for fear of losing a partner and that family members warned them against hysterectomy because “they (men) won’t want you.” The authors pointed out that, historically, black males associated fertility control with feeling powerless, which may have contributed to some of the responses to hysterectomy.

It’s undisputed that negative stereotypes exist regarding hysterectomized women, but it’s important to note these views are not universal. In the aforementioned studies, experiences differed between women with “a continuum of responses from very positive to very negative.” Several women reported feeling supported and that their partners “only wanted what was best for them.”8

Dr. Elson stressed, “Women are different from each other in many ways, and do not react similarly to the same medical procedure.”

As such, hysterectomy may be appropriate for some, but it’s not for everyone. Researchers have emphasized how limited women’s knowledge is in the area of their reproductive organs and, by extension, the consequences of their removal.4 It’s the responsibility of physicians to fill in the knowledge gaps. Women have reported their physicians recommending hysterectomy but no other alternatives.

Women’s free choice to undergo hysterectomy is really only constrained choice when there are a lack of appropriate alternative options.” Dr. Elson clarified. “Women I interviewed often explained that they would have preferred less radical options if those had been offered. The power to choose is meaningless if women are given no alternatives.”

And it’s because of stories like these Ms. Cloutier-Steele is adamant that women are completely informed. “It’s the misinformation—many women would not have surrendered to having these procedures if they had known. If a doctor’s only solution is to open you up and take everything out, he’s not the one for you. Find a doctor with the right skill,” Cloutier-Steele admonished. “Ask questions and talk to everyone on both sides, but look for the facts as to how real women live without their organs.”

ABOUT THE AUTHOR Alicia Armeli is a Health Freelance Writer, Registered Dietitian Nutritionist, and Certified Holistic Life Coach. She has master’s degrees in English Education and Nutrition. Through her writing, she empowers readers to live optimally by building awareness surrounding issues that impact health and wellbeing. In addition to writing, she enjoys singing, traveling abroad and volunteering with her local animal shelter.

ABOUT THE DOCTOR Jean Elson has a PhD in sociology, a joint master’s degree in sociology and women’s studies, and a master’s degree in educational psychology. Her book, Am I Still a Woman? Hysterectomy and Gender Identity, has helped women and the medical community understand the complex interconnectedness of body and gender identity. She currently is Senior Lecturer Emeritus for the Department of Sociology at the University of New Hampshire. Areas of specialty include sociology of gender, family, women’s health and illness, and sexual behavior.

ABOUT CLOUTIER-STEELE Lise Cloutier-Steele is a communications specialist, professional writer and editor, and women’s rights advocate. She’s the author ofMisinformed Consent: Women’s Stories about Unnecessary Hysterectomy. By telling the stories of hysterectomized women, Cloutier-Steele has encouraged her readers to look beyond surgery. She’s also author of the books Living and Learning with a Child Who Stutters and There’s No Place Like Home. Ms. Cloutier-Steele has received a Canada 125 Award in recognition of her significant work within the community.

REFERENCES

1. Hammer, A., Rositch, A. F., Kahlert, J., Gravitt, P. E., Blaakaer, J., & Sogaard, M. (2015). Global epidemiology of hysterectomy: possible impact on gynecological cancer rates. American Journal of Obstetrics and Gynecology, 213(1): 23-29. doi: 10.1016/j.ajog.2015.02.019

2. Elson, J. (2004). Am I still a woman? Hysterectomy and gender identity. Philadelphia, PA: Temple University Press.

3. Goktas, S. B., Gun, I., Yildiz, T., Sakar, M. N., & Caglayan, S. (2015). The effect of total hysterectomy on sexual function and depression. Pakistan Journal of Medical Sciences, 31(3): 700-705. doi: 10.12669/pjms.313.7368

4. Harmanli, O., Ilarslan, I., Kirupananthan, S., Knee, A., & Harmanli, A. (2014). Women’s perceptions about female reproductive system: a survey from an academic obstetrics and gynecology practice. Archives of Gynecology and Obstetrics, 289: 1219-1223. doi: 10.1007/s00404-013-3116-1

5. Serour, G. I. (2008). Medical and socio-cultural aspects of infertility in the Middle East. Human Reproduction, (1): 34-41. doi: 10.1093/humrep/den143

6. Douki, S., Zineb, S. B., Nacef, F., & Halbreich, U. (2007). Women’s mental health in the Muslim world: Cultural, religious, and social issues. Journal of Affective Disorders, 102(1-3): 177-189. doi: 10.1016/j.jad.2006.09.027

7. Marván, L., Quiros, V., López-Vázquez, E., & Ehrenqweig, Y. (2012). Mexican beliefs and attitudes toward hysterectomy and gender-role ideology in marriage. Health Care for Women International, 33: 511-524. doi: 10.1080/07399332.2011.610540

8. Williams, R. D. & Clark, A. J. (2000). A qualitative study of women’s hysterectomy experience. Journal of Women’s Health & Gender-Based Medicine, 9(2): S15-S25.

Is it necessary to remove my uterus?

Ask4UFE.com
By Alicia Armeli

In the United States alone, 400,000 hysterectomies are done annually with 68% performed to treat benign conditions like abnormal uterine bleeding and fibroids.With numbers this high, it raises the following question, Is a hysterectomy medically necessary for fibroid treatment?

“While hysterectomy is an option for women suffering with symptomatic fibroids, it’s completely unnecessary,” says Dr. John Lipman MD, Medical Director and Interventional Radiologist at the Atlanta Interventional Institute in Atlanta, Georgia, and a pioneer developer of uterine fibroid embolization (UFE). “If you have cancer, hysterectomy is completely appropriate,” he emphasizes. “But fibroids are benign tumors.”

Yet, ironically, statistics show that hysterectomy continues to be the second most common surgery in the U.S. performed on women of reproductive age.2

Three types of hysterectomies exist and, depending on the reason for surgery, can also include the removal of the ovaries and fallopian tubes. A radical hysterectomy removes the uterus, cervix, and surrounding tissue that hold these structures in place. A total hysterectomy removes the uterus and cervix, whereas a partial or simple hysterectomy removes the uterus but leaves the cervix intact.3

Hysterectomies can also be performed differently. For example, an abdominal hysterectomy is an open procedure with large incisions and a slow recovery time that can last between four to six weeks4—and, for some women, could take up to eight weeks.5

A hysterectomy can also be performed through the vagina or laparoscopically—a type of surgery that makes small incisions in the abdomen and then uses slender instruments to help guide the surgeon in removing the uterus. This technique avoids the need for a larger incision, as seen in an abdominal hysterectomy3 and has a recovery time of about three to four weeks.4 However, as Dr. Lipman points out, this is performed in the minority of cases.

Although one technique may be considered less invasive than another, each has its own set of risks and complications both during and after surgery. “With any surgery there are risks of bleeding, infection, and adhesions,” Lipman explains. “The risks and recovery time of UFE are much lower than surgery. Our patients go home the same day with just a Band-Aid and are back at work typically one week after the procedure.”

Multiple studies have indicated potential post-procedural complications such as bladder dysfunction following all three types of hysterectomies.6,7  A five-year follow-up study published in the British Journal of Obstetrics and Gynecology found persistent vaginal bleeding to follow partial hysterectomy.7 Other possible complications can include constipation, pelvic pain, sexual dysfunction, and depression.7,8

Despite the potential consequences seen in the majority of women, some gynecologists still believe hysterectomy is best and should be recommended more often to pre- and perimenopausal women. The authors of a paper entitled, Should We Recommend Hysterectomy More Often to Pre-Menopausal and Climacteric Women? contend that benefits associated with having a hysterectomy outweigh potential risks of living with a postmenopausal uterus.9 Authors Erik Qvigstand and Anton Langebrekke wrote, “We argue that hysterectomy should be considered with myomas (uterine fibroids) and/or abnormal uterine bleeding if [women] have no desire for pregnancy and are aged above 40 years.” They added, “minimally invasive techniques…will never be 100% successful, and many women will require retreatment.”

“While some women will require re-treatment, this is the exception,” Dr. Lipman disputes. “Ninety percent of women who undergo UFE will find relief from their symptoms and in women treated who are over 40 years of age, the majority will make it to menopause without any additional therapy.”

Furthermore, the benefits to a woman keeping her uterus may outweigh the retreatment risk. “The uterus is important for women beyond childbearing,” Dr. Lipman continues. “It’s important for them physically—women having hysterectomies are seen to experience bone loss, as well as experience psychological and sexual obstacles. Some women see losing their wombs as losing their womanhood and struggle with this.”

Albeit Qvigstad and Langebrekke’s second argument is true, that there’s never a total guarantee with any medical procedure, studies show that less-invasive techniques like UFE are promising for the majority of women suffering from fibroids.

According to a study published in the American Journal of Obstetrics and Gynecology,10 a re-intervention hysterectomy following uterine fibroid embolization (UFE) was performed in approximately 28% of women who saw no relief in heavy bleeding. But upon further analysis, the authors of the study found that only women with higher body mass indices experienced unsuccessful UFE. The results of this study mirror other studies that found long-term improvement of heavy bleeding in nearly 75% of women who underwent UFE.11

With effective and minimally invasive techniques like UFE available, the question still remains, Why are so many women still opting to part with their wombs? The truth is that many women are unaware of alternatives to surgery, prior to hysterectomy.

Over a decade ago, a Yale University study showed only 5 percent of gynecologists were suggesting UFE as a treatment option.12 Another study revealed many women who underwent UFE had learned about it from family, friends, the media, and researching online—but not by gynecologist referral.13 Today referral statistics have improved but still have a long way to go.

Earlier this year at the 40th Annual Society of Interventional Radiology Meeting, Dr. Lipman presented data from his research revealing that out of 234 women who later underwent UFE to treat their fibroids, 57 percent of these women were told surgery was their only option and weren’t informed of UFE as a potential treatment.

“It’s 2015 and most women today who suffer from uterine fibroids and go to their gynecologist may not hear about UFE,” says Dr. Lipman. “A woman has the right to know all of her options. UFE is safer, less invasive, less expensive, and has a much shorter recovery time than surgery. But most importantly, a woman finds the relief she is looking for and gets to keep her uterus.”

If a woman is experiencing fibroid symptoms such as heavy bleeding, pelvic pain, and increased urinary frequency, the best action she can take is to seek out medical advice from physicians who work in a collaborative fashion. Detailed counseling from medical professionals regarding the effects of every procedure should be an integral part of each care plan. Creating such a dynamic has been show to improve overall patient care and satisfaction, says a study published in the Journal of Minimally Invasive Gynecology.14

“A woman should see her gynecologist and have a thorough exam to see if she does indeed have fibroids,” encourages Dr. Lipman. “If she does, then her gynecologist will give her a range of treatment options. Once she has her gynecologist’s recommendation, she should then seek out an interventional radiologist who has expertise in UFE and get an additional opinion. Once she’s presented with all the tools and information she needs, she can weigh the pros and cons and decide what’s best for her.”

ABOUT THE AUTHOR Alicia Armeli has a Master of Science in Nutrition and Whole Foods Dietetics (MSN/DPD) and is a registered dietitian nutritionist, a certified dietitian, and a holistic life coach. In addition to writing, she enjoys singing, traveling abroad and volunteering with her local animal shelter.

ABOUT THE DOCTOR John Lipman is Medical Director and Interventional Radiologist at the Atlanta Interventional Institute in Atlanta, Georgia, and a pioneer developer of UFE. With his extensive UFE experience and by actively participating in clinical research trials, Dr. Lipman strives to help the public and other physicians become better informed about uterine fibroids and all treatments available.

REFERENCES

  1. Corona, L. E., Swenson, C. W., Sheetz, K. H., Shelby, G., Berger, M. B., Pearlman, M. D., Campbell, D. A., Delancey, J. O., & Morgan, D. M. (2015) Use of other treatments before hysterectomy for benign conditions in a statewide hospital collaborative. American Journal of Obstetrics & Gynecology, 212(3): 304.e1-7. doi:10.1016/j.ajog.2014.11.031
  2. National Women’s Health Network. (2015). Hysterectomy. Retrieved July 14, 2015, from https://nwhn.org/hysterectomy?gclid=CMzggab63cYCFYU5aQodVJwPxQ
  3. The American Congress of Obstetricians and Gynecologists. (2015). Hysterectomy. Retrieved July 14, 2015, fromhttp://www.acog.org/Patients/FAQs/Hysterectomy
  4. Office on Women’s Health, US Department of Health and Human Services. (2014). Hysterectomy. Retrieved July 17, 2015, fromhttp://womenshealth.gov/publications/our-publications/fact-sheet/hysterectomy.html
  5. Royal College of Obstetricians and Gynaecologists. Recovering Well: Information for you after an abdominal hysterectomy. Retrieved July 22, 2015, fromhttps://www.rcog.org.uk/globalassets/documents/patients/patient-information-leaflets/recovering-well/abdominal-hysterectomy-recovering-well.pdf
  6. Maneschi, F. (2014). Urodynamic study of bladder function following nerve sparing radical hysterectomy. Journal of Gynecologic Oncology, 25(3):159-161. doi:10.3802/jgo.2014.25.3.159
  7. Andersen, L. L., Zobbe, V., Ottensen, B., Gluud, C., Tabor, A., & Gimbel, H. (2015). Five-year follow up of a randomised controlled trial comparing subtotal with total abdominal hysterectomy. British Journal of Obstetrics and Gynecology, 122(6):851-857. doi:10.1111/1471-0528.12914.
  8. Goktas, S. B, Gun, I., Yildiz, T., Sakar, M. N., & Caglayan, S. (2015). The effect of total hysterectomy on sexual function and depression. Pakistan Journal of Medical Sciences, 31(3):700-705. doi:10.12669/pjms.313.7368
  9. Qvigstad, E., & Langebrekke, A. (2011). Should we recommend hysterectomy more often to pre-menopausal and climacteric women? Acta Obstetricia et Gynecologica Scandinavica, 90: 811-814.
  10. van der Kooij, S. M., Hehenkamp, W. J. K., Volkers, N. A., Birnie, E., Ankum, W. M., & Reekers, J. A. (2010). Uterine artery embolization vs hysterectomy in the treatment of symptomatic uterine fibroids: 5-year outcome from the randomized EMMY trial. American Journal of Obstetrics & Gynecology, 203:105.e1-13.
  11. Scheurig-Muenkler, C., Koesters, C., Powerski, M. J., Grieser, C., Froeling, V., & Kroencke, T. J. (2013). Clinical long-term outcome after uterine artery embolization: sustained symptom control and improvement of quality of life. Journal of Vascular and Interventional Radiology, 24(6):765-771. doi:10.1016/j.jvir.2013.02.018
  12. Yale University. Section of Vascular and Interventional Radiology. (2001). Women would rather switch than fight with gynecologist over uterine fibroid embolization. Retrieved July 23, 2015, fromhttp://yaleir.vasculardomain.com/images/uploaded/yale/switch_ufe.cfm
  13. Lvoff, N. M., Omary, R. A., Ryu, R. K., Chrisman, H. B., Resnick, S. A., Vogelzang, R. L., et al. (2002). The role and effect of gynecologists in referring patients for uterine artery embolization; Abstract presented at the 27th Annual Scientific Meeting of the Society of Cardiovascular and Interventional Radiology (SCVIR). Baltimore, MD.
  14. Zurawin, R. K., Fischer, J. H., & Amir, L. (2010). The effect of a gynecologist-interventional radiologist relationship on selection of treatment modality for the patient with uterine myoma. Journal of Minimally Invasive Gynecology, 17(2):214-221. doi:10.1016/j.jmig.2009.12.015

Infected and undocumented : Thousands of Canadians dying from hospital-acquired bugs

Postmedia News, Tom Blackwell

Kim Smith was no stranger to stress – her job in community corrections often brought her face to face with members of Winnipeg’s violent street gangs. But as she lay in a local hospital’s gynecology ward more than a year ago, nurses called her brother with an unusual question: Did Kim suffer from any kind of emotional troubles? The woman, her caregivers said, had been telling them she wanted to kill herself. It was a shocking turn of events, coming a week after Smith entered Winnipeg’s St. Boniface Hospital for a hysterectomy and ovary removal procedure. In the days since the operation, however, she had been complaining of escalating pain in her gut, so intense that she began to fear for her life – and then apparently wanted to end it. By the time medical staff took the woman’s complaints seriously, an infection inside her belly had developed into necrotizing fasciitis (flesh-eating disease) and devoured large chunks of her abdomen. Wikthing hours of emergency surgery to drain “brown, foul-smelling liquid” and excise dead tissue, and four days after her 45th birthday, Smith was dead. Read the rest here:

http://news.nationalpost.com/2015/01/19/infected-and-undocumented-thousands-of-canadians-dying-from-hospital-acquired-bugs/ 

Canada’s high hysterectomy rate under scrutiny

Less-invasive alternatives exist for many women faced with losing their uterus, and possibly their chance to have children. But too few have access to those methods.

Diana Zlomislic, News reporter, The Toronto Star

This article was published on Tuesday, June 10, 2014

Mercy Okalowe

At 26, Mercy Okalowe fought doctors’ recommendations that she have her uterus removed to deal with fibroids that were causing heavy bleeding and crippling pain. Four years later, her uterus is still intact but the non-cancerous tumours are gone.

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.

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?”

Private parts – Holly’s search for minimally invasive alternatives to hysterectomy

Holly Bridges, www.unhysterectomy.com

Holly is a patient advocate and the author of The UNHysterectomy – Solving your painful, heavy bleeding without major surgery. The book was released in April 2012, and features a foreword by Sony Singh, M.D., Ob-Gyn, Director of Minimally Invasive Gynecology, Shirley E. Greenberg Women’s Health Centre, Ottawa Hospital. Visit Holly’s new web site, www.unhysterectomy.com; join her Facebook page, www.facebook.com/unhysterectomy, and her Twitter feed, www.twitter.com/unhysterectomy.

When a doctor described her uterus as a “cancer nest” Holly Bridges assumed a hysterectomy was her only option. Today, after undergoing a less invasive alternative, she’s glad she did a little research.

I knew as I lay there at 2 in the morning, soaking through a super-plus tampon and the two overnight pads I had taped together, that it would be another sleepless night. I dreaded getting out of bed to change my supplies. I had ruined enough underwear, nightgowns and sheets over the previous year to know that any sudden movement, even rolling over in bed, could cause a major gush. Still, I braced myself, slowly squeezing my legs together as I rose to cross the bedroom floor. Blood trickled down my thigh and onto the carpet as I fumbled my way in the dark toward the bathroom. Relief was on the way. At least for another three hours.

Bleeding profusely three days a month, losing sleep, keeping a change of clothes at work, not being able to concentrate because of my anemia and total exhaustion was the new normal for me. As a single parent raising two adolescent girls and working two jobs, I was a mess. Were it not for the love and support of my children, my family, my boyfriend and my boss, I probably would have lost my job and my sanity. I needed help, and I needed it fast.

I decided to do what most women love to do – go shopping. Except in this case, it was for a doctor.

Enough is enough, I thought as I trundled off to my family doctor for the third time in a year. “I can’t take this bleeding anymore,” I told her. “What’s wrong with me?” She prescribed the blood-thickening medication Cyklokapron, which I was to take every four hours during my heaviest days. She also sent me for an ultrasound, which revealed multiple fibroids growing inside the lining of my uterus, one as big as an orange and growing bigger by the month.

Fibroids (I now know) are non-cancerous tumours that develop on or in the lining of the uterus and can cause severe bleeding, extreme pain or, for some lucky women, no symptoms at all. Approximately 40 per cent of Caucasian women and 60 per cent of African-American women have fibroids by age 35, with the numbers increasing to 70 per cent and 80 per cent, respectively, by age 50. No one really knows what causes them, but estrogen makes them grow; happily, they usually stop increasing in size after menopause.

My doctor referred me to a gynecologist who explained I had three options – manage my symptoms until menopause, increase my dose of Cyklokapron or have a partial hysterectomy to remove my uterus. “Your uterus lit up like a Christmas tree,” he said, referring to my ultrasound, which looked like a Lite-Brite screen, with multiple coloured dots indicating where the fibroids were located. He described my uterus as a “cancer nest,” and said a hysterectomy was the only sure way to remove any risk of developing uterine cancer down the road, even though I had no family history of it or any other cancer. With language like that, I bought in. I phoned my boyfriend on the way home, crying, “Gaston, I think I have to have a hysterectomy.” I was drained and exhausted, my brain was in a fog, and I was now facing the prospect of major surgery. I thought about it and, after my next even heavier period, decided to call my gynecologist to book the surgery. My sister Sue told me I was crazy. She’d heard all kinds of stories about women who experienced major health problems after having hysterectomies. I ignored her, saying it was my body and I could choose whatever treatment I wanted. After all, I knew several women who’d had the procedure and raved about their results. One of them is my friend Louise, who, like me, lives in Ottawa. She told me the surgery gave her a new lease on life after years of bleeding and excruciating lower back pain caused by endometriosis.

“I suffered for 20 years and just kind of put up with it as most women do,” Louise confided. “One morning I woke up and the pain was so bad I had to crawl to the bathroom. That was the last straw. I went to my doctor and asked for a hysterectomy.” She says she’s never looked back. I was envious and wanted the same relief.

Then, three weeks before my surgery, I got a phone call from my dad in Toronto saying Sue had been killed in a car accident an hour earlier. Just like that. Gone. No warning, no chance to say goodbye or I love you. She was only 52. After the initial shock wore off and we got through her funeral, I began to think. If Sue could wake up one morning, do something as innocent as watch her son play hockey and not come home, then maybe I might not survive something as major as surgery or have complications. My doubts were enough to make me cancel my hysterectomy. Suddenly, I turned the whole freedom to choose thing upside down.

A few days later, my family doctor suggested I try the Mirena, a progesterone-releasing intrauterine device, to stop my period and buy me some time. (I was one of the lucky fibroid sufferers for whom it worked. But at about $300, the Mirena is expensive, and it wasn’t covered by my health insurance plan.) Finally, with the bleeding under control, I was able to think straight for the first time in more than a year. I decided to do what most women love to do – go shopping – except in this case if was for a doctor who could help me without removing my reproductive organs. I shopped online, made cold calls, scanned books and articles, spoke with experts over the phone, and finally found a gynecologist who specialized in alternatives to hysterectomy. Finding him was like having a miracle dropped in my lap (pun intended).

Fortunately for me, Sony Singh had just moved to Ottawa to begin teaching obstetrics and gynecology at the University of Ottawa and to open a new minimally invasive gynecology clinic at the Ottawa Hospital. At the tender age of 34, Singh is considered one of the leading experts in Canada on minimally invasive gynecology, which employs smaller and fewer incisions, leading to a shorter recovery time by reducing pain and trauma to the body. Singh and his colleague Hassan Shenassa, also of Ottawa, are part of a national group of gynecologists who have formed the first professional society in Canada devoted to promoting the specialty.

Singh confirms that hysterectomies are still warranted in some cases, but he says less invasive procedures can produce as high as an 80 per cent avoidance rate. “We like to avoid hysterectomy because the risks of infection and injury to the bowel and bladder,” he says.

“The reason I am so passionate about minimally invasive surgery is because it significantly benefits our patients,” continues Singh. “They feel better sooner, they’re back at work quicker, whereas with traditional approaches patients require a hospital stay, longer recovery with more suffering and definitely more risks.”

Minimally invasive surgeries include such procedures as burning the lining of the endometrium to reduce heavy bleeding, endometrial ablation (which Singh can perform in his office without anesthetic in as little as 90 seconds for non-fibroid-related problems) and vaginal hysterectomies, in which the uterus is removed through the vagina without cutting through the abdomen. Although still a hysterectomy, this type is considered less invasive because it presents fewer risks, has a faster recovery time and can be done as day surgery.

In November 2008, the American Association of Gynecologic Laparascopists (now known as the AAGL), of which Singh and a growing number of Canadian gynecologists are members, issued a statement at its global congress in Las Vegas saying that training gynecologists in minimally invasive procedures is the key to increasing patient access. When contacted, the Society of Obstetricians and Gynecologists of Canada declined comment on its position on minimally invasive surgery.

Armed with this information, I was anxious to get a referral from my original gynecologist for the surgery. I was shocked when he refused to give me one. Lise Cloutier-Steele, author of Misinformed Consent: Women’s Stories about Unnecessary Hysterectomy, says many gynecologists in Canada are either unaware of the latest alternatives to hysterectomy, unwilling to refer their patients to subspecialists such as Singh, or reluctant to disrupt their practices or extend their already long waiting lists to upgrade their skills. The solution, she says, lies in women refusing to take no for an answer.

“There are a number of things you can explore before you surrender your organs,” states Cloutier-Steele. “In this day and age, you cannot just take a doctor at his word. Find out what kind of skill he has. Ask if he can perform a myomectomy (removal of the fibroids only) instead of a hysterectomy. If not, the doctor will usually prescribe only the surgery he is comfortable doing, and a lot of women are not cognizant of this fact. Women have to do their homework.”

I did mine: I got a referral from my family doctor, and almost a year to the day my sister died, Singh performed two of the most high-tech alternatives to hysterectomy available in the world today – a hysteroscopic myomectomy to cut out the largest of my fibroids, and a hysteroscopic endometrial ablation to burn the lining of my endometrium.

Both procedures were done by inserting an eight-millimetre scope in the opening of my vagina, through my cervix and into the cavity of my uterus. A tiny camera on the end of the scope projected a live picture onto two plasma screens above the operating table to show Singh exactly where to attack the fibroids and burn the lining of my endometrium. Talk about hand-eye coordination. The whole thing took about 90 minutes.

A few hours later, recovering from general anesthetic (which I chose; I could have had a local), I was up and around – no pain, no painkillers, no incisions, no stitches and all my reproductive organs intact. I plunked myself down in the passenger seat of my car when Gaston came to pick me up, his jaw dropping from the shock of how well I was doing. I was back at work within 10 days and, like my friend Louise, I have never felt better.

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