Suffering in Silence: Thousands of Canadian Women and Cherie Storozinski
May 3, 2013~ “My name is Cherie Storozinski. I am 50 years old and live in Dauphin, Manitoba, Canada. I am a victim of transvagnial mesh.”
That’s how Cherie started her email to MDND.
Cherie, 50, had a wonderful life in rural Manitoba, Canada. She and her husband, Curt, live on 20 acres and run a micro-farm, nine miles outside of the small town with a population of 8,000.
She and her friends – the Crazy Cat Ladies Rural Rescue and Resource – started a cat rescue and spay program for feral barn cats. She has two large dogs and six cats, free-range chickens and she grows and cans food she and her husband eat. Of her three adult children, two work in Alberta and a third is studying mechanical engineering at the University of Manitoba. She worked as a licensed real estate agent/office administrator but works now as a part-time manager at a fitness center.
Cherie began playing the bagpipes about 10 years ago. She hasn’t played the bagpipes in years, ever since her surgical mesh and uterine ablation procedures.
Cherie Storozinski’s story began in January 2010. After years of having issues with heavy periods she was referred to a gynecologist in Yorkton, Saskatchewan.
She didn’t have pelvic organ prolapse (POP) or stress urinary incontinence (SUI), other than when she laughed or played the bagpipes too hard, but the doctor thought her heavy periods could be treated with a uterine ablation. In that procedure the uterine wall is burned to stop or slows excessive menstrual bleeding.
During a September 2010 doctor’s appointment her surgeon suggested she might also be a candidate for a synthetic tape to treat her incontinence and he’d perform a test.
The sling, she was told, was a “piece of tape” that would lift up the urethra.
The Johnson & Johnson brochure says the Gynecare TVT Obturator System is a blue polypropylene Prolene mesh strip packaged with trocars (steel guides) to hold up the urethra, but Cherie says she never saw a brochure or any printed material.
“They tell you to fill the bladder with water then say you have to tell me when you can’t hold it anymore. I started leaking and told him I couldn’t hold it anymore then he makes you cough.”
The test showed she qualified and before she knew it, the anesthesia kicked in and the Saskatchewan gynecologist began implanting the synthetic mesh.
She observed there were at least four or five women prepped for surgery. She says he was “churning them out,” that day from the Saskatchewan operating room. Following her 20 minute procedure, she and her husband drove three hours to their home so she could recover.
At this time, Cherie was unaware that Health Canada, Canada’s version of the U.S. Food and Drug Administration (FDA), had issued a Notice to Hospitals on February 4, 2010. It encouraged that patients be informed before surgery of all adverse events including the “possible need for additional surgical procedures that may not always fully correct some potential complications.”
Cherie found the Health Canada warning after her surgery and says she was not told about the warning.
Afterward, when she woke and asked about the pain in her groin area Cherie was told it was due to the way her legs were in the stirrups during surgery.
“They said they didn’t put needles through. I even looked when I got home. I did not believe them, it was a 12-minute surgery. No way should my groin hurt like that.”
Other than the leg pain she had no problems until February 2012.
“I started to experience discomfort and pain. I had cramping and a backache or a little leak here or there. I thought it was the bladder sling and called the doctor’s office in Yorkton only to be told I needed another referral.”
Her doctor treated her for a vaginal infection but the pain on the left side continued. She describes it as a burning or pinch and stabbing pain to the groin area. Cherie thought it was the mesh but her family doctor thought she had post-uterine ablation syndrome. Later the same doctor would tell her she never had a patient with complications from mesh.
An April 2012 ultrasound confirmed a cyst on the left ovary and fluid in the cervix, a symptom of a complication of post-uterine ablation syndrome.
The radiologist said that procedure should not be causing her pain but because of the symptoms she was scheduled for a complete hysterectomy in September 2012. Until then she still had the pain to deal with. Cherie’s husband had to take her to the emergency room in June for a pain shot.
Meanwhile the urinary leakage continued and Cherie suspected the sling was no longer working. First things first and the hysterectomy was performed removing her uterus.
“But in December I didn’t feel well one weekend. I stood up and I actually felt something move in my lower abdomen. A few days later my husband and I tried to have intercourse. I felt a lot of pain. I told my doctor I felt something moved and that there was pain. She told me things move after surgery and treated me for a bladder infection which turned out to be negative.”
The Rural Life
Knowing something was not right Cherie began a series of medical appointments. First she was treated for a bladder infection in January. In February she received a confirmation that the mesh had eroded through the vaginal wall and was now partially sticking out.
Each appointment represented a major hassle. The Storozinski’s rural home is at least two hours away from each doctors appointment. When Cherie began having pain she was asked to quit her job as a licensed real estate office administrator because, as she says she was told, “You don’t look happy and that’s now the image we want to portray here.”
This past February, Cherie drove another two hours to see a different urologist who did a cystoscopy and found there were no perforations in the bladder. He thought he could remove the TVT sling in his office and seemed surprised when she said ‘No’ because even the exam hurt too much, so much that she says she felt nauseous from the pain.
Under the Canadian system of healthcare, she was told it could be a six-month wait to have her surgeon/urologist remove the TVT sling. But she didn’t want to return to the same doctor who could only promise a partial mesh removal.
“I told my husband I don’t want to go back to him but he’s my only choice.”
“So then I started my journey of research. I sat for hours on the internet looking for information and doctors to help me with this issue. That is also how I discovered Canadian doctors will not remove all the mesh, just the piece that is bothering you the most. Canadian doctors also do not tell women should be going to the USA for total removal.”
Media Coverage and Government Response
Early in 2013, Cherie saw a story in the Winnipeg Free Press about another woman plagued with complications following a mesh implant. See the story here.
Christine Asprey is a mother of four children who is part of a vocal band trying to raise awareness and funds to travel to Los Angeles for mesh removal from UCLA and the urology group headed by Dr. Shlomo Raz who appears to be having the most success globally with a full mesh removal. Using an imaging device, called a translabial ultrasound, Dr. Raz and his team can see the mesh before a removal which is thought to offer a surgeon the best chance to retrieve all of the polypropylene in what is otherwise essentially a blind procedure.
But it’s not cheap. The average cost is $30,000 and generally more than one visit to Los Angeles is required. Many times there is follow up reconstructive surgery needed.
Convinced there are no options in Canada, except partial removals, Stephanie Brad, Marika English and Ruth Olsen, three mesh-injured women from Saskatchewan, called the media as they appeared before their Minister of Health to say there are no Canadian doctors willing to do complete mesh removals. Partial removals had left many women in worse shape. See back story here.
The women were lobbying the provincial government to cover the estimated cost of travel to and from Los Angeles to have a mesh removal surgery not available in Canada.
In response, the president of the Canadian Society of Pelvic Medicine sent Cherie a link to the Canadian “List” of doctors who can help with mesh complications. See the list here.
“To us, the injured patients, “seem to be able” is not good enough. Before trusting any surgeon again, we insist on evidence that the said specialists are able to do the procedure safely, without causing further damage,” was the response from the women.
“The list of doctors, I think it’s a knee jerk reaction to make themselves look good,” Cherie says acknowledging there were three women in Manitoba who had their mesh partially removed. “All three live in constant pain, all three of them.”
The women respond they are unwilling to risk further injury without proven successful outcomes.
To go outside of a province for medical services the patient has to have a recommendation from a specialist confirming the necessary medical service is not available there.
In February, CTV- Television in Toronto did a follow-up to their successful series reporting on Canadian women demanding some answers from their government. (here)
“This whole thing is beyond frustrating. I feel so cheated by our medical profession and by our government. They allowed these meshed to be put in but will not send us to the professionals to remove the mesh and correct the damage the mesh has done. I ask myself why? Why because they would have to admit they are not capable, because they all have used that mesh and benefited from it? The fact that the mesh used in me was pulled off the market seems to make no difference. Sad. free medical is not what some people think. “
Under the Canadian health system, in order to obtain a referral out of the country you first must prove your exhausted all resources domestically. Cherie sought out and found a specialist, a urogynecologist in Manitoba, had a urodynamics test and he too offered a partial removal, but by now she’d been told that could allow pieces of mesh to migrate in her body. There was a risk of permanent nerve damage.
Sensing there was no trust between them, the doctor gave her what she had requested – a referral out of the country. She has a mesh removal surgery planned with a doctor in St. Louis who says he has been doing full mesh removal surgeries since 1996.
Meanwhile the pain in her groin has gotten worse and she’s been back and forth to the hospital clinic for a heavy dose of antibiotics (2,500mg/day) to treat an infection at the site where the mesh has eroded into her vagina. There she received 2,500 mg of antibiotics a day.
Cherie’s referral may have opened to door to other women in Manitoba to be referred outside of Canada to surgery. But if she doesn’t get funded Cherie says she has no choice but to go anyway.
“My favourite place is my patio. I have a large pond with a waterfall. In the summer, weather permitting, I have my morning coffee on my patio. It is so peaceful, the birds land on the waterfall for a drink, you hear the other birds singing and the morning sun warms you up. I only hope that I can get this mesh out of me to fix up the flower beds around my patio. Last summer it was too painful to bend over and weed.”
Her law firm, Siskinds in Ontario (here) is currently representing about 1,000 mesh-injured women and their families.
CTV- Multimillion Dollar Lawsuit Filed Over Transvaginal Mesh, April 2012
Health Canada warning, February 4, 2010
“Health Canada is concerned about Canadian and international reports of various intraoperative and postoperative complications associated with the use of these medical devices.”
Canadian News Wire on Transvaginal Mesh Class Action, April 17, 2012
Mesh Medical Device News Desk – CTV Canadian Transvaginal Mesh Class Action Lawsuit, April 2012
Facebook Canadian Victims of Transvaginal Mesh
MDND- Canadian Women Seek Transvaginal Mesh Removal Help in the US