Keep your uterus, lose the fibroids

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.

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.

Only three options?

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 is lit up like a Christmas tree," he said, referring to my ultrasound, which looked like a Lite-Brite screen, with zillions of 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 heavy 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 in my lower back 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 it 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).

Meeting the right doctor

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 says less invasive procedures can produce as high as an 80 per cent avoidance rate. "We like to avoid hysterectomy because of 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, who is also the executive director of the Society of Minimally Invasive Gynaecology. "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, where 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.

Last November, the American Association of Gynecologic Laparoscopists (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 Gynaecologists of Canada declined comment on its position on minimally invasive surgery.

Not taking no for an answer

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, Ottawa 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.

"This is 2009; 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.

The surgery

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 over how well I was doing. I was back at work within 10 days and, like my friend Louise, I have never felt better.

For more information about minimally-invasive alternatives to a hysterectomy, see Me oh myomectomy and Fibroid FAQ.

This article originally appeared in the September 2009 issue of More