Thousands of Quebec women suffer from complications related to the placement of their suburethral strips. Announced two years ago, the specialized centers to accommodate them are not all functional yet, learned La Presse.

In March 2021, the Department of Health and Human Services announced a new program1 for the management of urinary incontinence and the management of complications related to suburethral tape. A survey2 by the College of Physicians published in 2020 recommended this.

Two years later, this program is still not fully functional. “The recruitment of staff was more difficult during the first months of deployment due to the pandemic, and still remains precarious given the state of human resources in the network”, indicated to La Presse Marjorie Larouche, media relations of the Ministry of Health and Social Services (MSSS).

“It is clear that the situation does not yet sufficiently represent the care that we must provide”, we also indicated to the office of the Minister of Health, Christian Dubé. “We want to be clear: all women whose medical situation requires it will be able to have surgery. We’re going to make sure it’s accessible and free of charge. »

Suburethral slings are polypropylene mesh devices, which look like a net. They have been placed under the genitals of women by surgery for about twenty years, to fight against urinary stress incontinence. A problem that affects one in seven women3.

Following stripping, between 4% and 12% of patients may develop side effects, such as chronic disabling pain in the groin, thighs, pubis, abdomen, back, vagina and the perineum, according to the FMSQ3.

Other complications, such as erosion of the vaginal wall – going as far as perforation of the vagina or the bladder – and recurrent urinary tract infections, have also been reported, indicates the College of Physicians.

At least 80,000 women have had suburethral strips in Quebec since 2000, according to the FMSQ. Based on this number, it is possible to estimate that between 3,000 and 10,000 Quebec women face complications.

In March 2021, the MSSS announced the establishment of four specialized centers to manage complex cases related to suburethral tapes. Two are located in Montreal, one in Quebec and one in Sherbrooke.

Between April 1, 2021 and December 3, 2022, these centers proceeded to 58 partial or total removal of strips, according to data provided by the MSSS.

During a similar period, from March 2021 to March 2023, at least 136 Quebec women would have opted for an operation in the United States instead, at their own expense, according to data from Cynthia Gagné, which offers a support service in this sense – The Ameshée experience – and who runs a Facebook support group.

Women turn to the United States because of a lack of access to or confidence in the Quebec system, we have seen on the private Facebook group of some 1,200 members administered by Cynthia Gagné (see following texts).

Since the announcement of the establishment of the centers of expertise in March 2021, the RAMQ has confirmed to us that it no longer compensates women who choose to have surgery outside Quebec. And this, even if the College of Physicians recommended, in 2020, that reimbursements for these patients continue “until the centers of expertise in Quebec are fully functional”.

32: Number of strip pick-ups made in Quebec from April 1, 2021 to March 31, 2022

16: Number of strip pick-ups made in Quebec from April 1, 2022 to December 3, 2022

Two years after its announcement, the center of expertise headed by the CIUSSS de l’Ouest-de-l’Île-de-Montréal is still not established, learned La Presse. “We are arranging the additional resources that come with the referral center designation,” media relations specialist Carl Thériault said in an email in mid-February. But our nurses, physiotherapists and urologists who specialize in slinging and stripping have continued to treat patients for several years,” he said.

According to our information, the three other specialized centers claim to be functional, but some reservations are needed.

But “the complexity and heaviness of the cases to be processed, linked to the relatively limited number of stakeholders, slowed down the establishment of the service”, had also specified another public relations officer, Justine Lesage, in December. Since the establishment of the service, 70 women have been treated at the CHUM and 75 others are waiting, according to information provided by the CHUM.

At the CHU de Québec–Université Laval, the deployment “is continuing for full-capacity commissioning in the fall of 2023,” said Bryan Gélinas, public and government affairs advisor. A total of 28 women had been treated at this specialized center as of December 2022, Gélinas said.

In Sherbrooke, the CHU de l’Estrie said that its reference center is functional, despite delays linked to the pandemic and the shortage of staff. The replacement of a nurse was underway in March. Between April 2021 and April 2022, center specialists placed six suburethral strips, and removed nine, reported Nancy Corriveau, communications advisor for this CIUSSS.

A dozen regional “secondary centers” specializing in urinary incontinence have also been designated by the MSSS as part of the new program. Their role is to offer multidisciplinary services to patients struggling with urinary incontinence and to refer them to centers of expertise as needed.

About 40% of these secondary centers lack resources, according to a finding made last summer by the Association of Obstetricians and Gynecologists of Quebec (AOGQ).

“Sometimes there were no nursing staff, or no physiotherapists, or no premises, illustrates Dr. Martine Bernard, secretary of the AOGQ. For us, it was a wake-up call, because it’s all very well to have access, but the clientele has to be able to get care. »

Despite pandemic-related delays, the CISSS des Laurentides, two Montreal CIUSSS (Centre-Sud and Est) and the CIUSSS de la Mauricie–Centre-du-Québec have indicated that they have the resources in place in their secondary centers to treat patients. , according to a request for information sent by La Presse.

At the CISSS du Bas-Saint-Laurent, some human resources are in place, but there is no room dedicated to the program.

On the other hand, on the side of Chaudière-Appalaches and Abitibi-Témiscamingue, the shortage of manpower has prevented the deployment of the secondary centers to date, indicated these two CISSS by email. The CISSS de la Montérégie-Est directed us to the MSSS, saying they were “working very closely” with them on the file.

Two other CISSSs, those of Laval and Outaouais, do not have a secondary centre. “We have no plans to develop the secondary center for urinary incontinence,” the CISSS de l’Outaouais said by email. For its part, the CISSS de Laval “informed the MSSS that it did not have the required resources […] to respond to the designation of secondary center” and therefore “was withdrawn from the establishments designated for this program”, indicated this CISSS by email.

The CISSS du Saguenay–Lac-Saint-Jean never answered us.

An “ordeal”, “intolerable” pain and a lack of confidence in the care provided in Quebec: a woman testifies to her journey to seek treatment, after the installation of a strip against urinary incontinence.

When she had a phone appointment with the CHUM’s new center of expertise last July, Johanne Ouellette didn’t really know what to expect. She had been directed there by a urologist and a gynecologist from Joliette, in Lanaudière, due to an infection due to the erosion of her suburethral strip.

For a year, pus and blood had been flowing continuously from her urinary meatus, to which were added urinary and bladder infections, she says. She had repeatedly consulted the emergency room, taken “nine kinds of antibiotics”, she laments, with no improvement in her condition. She hadn’t been able to have sex for over two years. Since the laying of her bandage in 2007, she suffered from chronic pain in her legs and knees.

Over the phone, Ms. Ouellette was told that the CHUM was then the only functioning center of expertise on complications related to strips in Quebec. Due to COVID-19, it would have been closed for several months. Despite the urgency of Ms. Ouellette’s situation, she was told she could not be seen for four to six months. La Presse had access to the recording of this conversation, without being able to authenticate it.

“The waiting period is approximately 6 months [in March 2023], indicated Andrée-Anne Toussaint, media relations at the CHUM, by email. The cases referred to us are complex and require time, and this, in a context where resources are highly solicited for a set of pathologies, which are also heavy and complex. »

In a Radio-Canada investigation broadcast in 2019, several women testified to having undergone operations to partially remove their strip in Quebec, when they were assured that the strip had been completely removed. These women then traveled to the United States, where additional lengths of plastic netting were removed.

This report has created a fracture in the confidence of Quebec women struggling with these complications, confirms Dr. Martine Bernard, of the Association of Obstetricians-Gynecologists of Quebec, herself a urogynecologist for the CIUSSS de l’Est-de-l’ Island of Montreal.

“Since 2020, doctors have upgraded to this specific technique [de strip removal] through training at congresses or with colleagues,” the College of Physicians maintains by email.

In parallel with her care by the CHUM, Ms. Ouellette took steps to undergo an operation in the United States. In Missouri, a specialized surgeon, Dr. Dionysios Veronikis, sees women from all over the world to have suburethral tapes removed.

This physician reviewed Ms. Ouellette’s chart and recommended complete removal of her strip as soon as possible. “My methodology differs from that of other surgeons, because I have been dealing with complications related to suburethral tapes for 25 years, said Dr. Veronikis by email to La Presse. I have seen the deplorable results in women who have undergone partial removal, and often multiple partial removals, and who continue to suffer daily. »

Then, in early September, a specialized urologist from the CHUM called Ms. Ouellette back. Again, La Presse had access to the recording of this discussion, without being able to authenticate it.

Over the phone, this specialist encouraged Ms. Ouellette to learn about the risks associated with complete strip removal. According to this specialist, Ms. Ouellette had a 90% risk of becoming completely incontinent if she went ahead with this procedure. She was also at risk of losing mobility in her leg. Contacted by La Presse on this subject, the CHUM could not comment on the specific case of Ms. Ouellette.

“The team works very hard to provide specialized care, from pain investigation to treatment, to patients with the most complex cases,” said Ms. Toussaint, of the CHUM, by email.

Ms. Ouellette ultimately ruled in favor of Dr. Veronikis in the United States. The sexagenarian left for Missouri in September, along with seven other women from Quebec and France. She underwent her surgery on September 23.

According to the operative report consulted by La Presse, she suffered due to an infected urethral strip, a chronic abscess cavity and a urethral fistula.

The day after the operation, Ms. Ouellette was able to walk and climb stairs, she says. She never became incontinent. She filed a complaint with the College of Physicians, believing that she had been poorly assessed by the CHUM specialist. She applied for compensation from the RAMQ for the costs arising from her operation in the United States, without success.

“I found a woman’s life again,” she rejoices, despite everything. I got my life back, I started working again! »

The medical community is still groping its way through the issue of better management of major complications related to suburethral strips, the College of Physicians confirmed to La Presse.

In 2020, the College of Physicians (CMQ) acknowledged that there are “little [scientific] publications on long-term adverse effects related to the placement of a sling” and, therefore, on the best grip in charge of patients.

Three years later, the scientific literature has progressed, but “we don’t have, to date, large studies that allow us to say beyond any doubt: this is what we have to do,” explained to La Presse Dr. Stéphane Ouellet, obstetrician-gynecologist and inspector at the College of Physicians. A multidisciplinary approach to managing cases of complex complications is recommended, he stresses.

The establishment of the four specialized centers also aims to contribute to the world literature on the issue, added Dr. Isabelle Tardif, Deputy Director General and Secretary of the College.

A “surveillance system” for dipstick-related complications should be implemented in specialist centers, according to the College’s 2020 recommendation. This system has not yet been deployed, said Dr. Tardif.

This approach makes Cynthia Gagné fear that some women here are being used as “guinea pigs” by receiving care in Quebec. On her support group, many women report complications after receiving care in Quebec, compared to those received in the United States.

After having herself undergone a successful operation with Dr. Dionysios Veronikis in the United States in 2019, Cynthia Gagné has been offering The Ameshée Experience since the end of 2020, a paid support service for women who want to experience it. render.

This service includes the costs of transport, accommodation, food, translation, etc. The surgery itself costs an average of $20,000, according to Gagné.

“Offering an accompaniment service for me became completely logical after two years of giving myself to see the need for help [of women] and the lack of resources in Quebec, explained to La Presse Cynthia Gagné . I decided to quit my job and now have the chance to help women from all over the world in a concrete way. »

The Ministry of Health and Social Services (MSSS) believes that “misinformation” is circulating on the various Facebook support groups about the services available and the competence of Quebec doctors, he told La Presse by e-mail.

“We are greatly concerned by this misinformation which misleads women about the availability and quality of services in Quebec and which redirects them to a service in English, in another country, which requires travel as well as significant costs (3000 -5000 additional $ for the accompaniment service), and which does not offer any postoperative follow-up”, indicated by email Marjorie Larouche, affairs with the media of the MSSS.

Even if dozens of Quebec women decide to have surgery in the United States, neither the College of Physicians nor the MSSS have contacted Dr. Veronikis, the two authorities confirmed to La Presse. However, the College of Physicians does not rule out doing so in the future.

Dr. Veronikis’ successes would be known by word of mouth, but not by the scientific community, insisted Dr. Tardif, of the CMQ.

The MSSS spoke in October 2020 with the Scottish government, which then shared the same concerns, added Ms. Vanheuverzwijn. Scotland has since changed its tune and reached an agreement with Dr. Veronikis in July 2022 so that Scottish patients with complications can be operated on by him.

In Quebec, specialists would have in the past invited Dr. Veronikis to participate in conferences in Canada, which he would have declined, said Dr. Alain Maillette, president of the Association of Urologists of Quebec. These specialists would have even tried to be trained on his surgical techniques, without success.

“I have never received a call from the College of Physicians or any member of the medical profession in Quebec,” Dr. Veronikis assured La Presse by email.

For those who will suffer all their life due to the installation of a suburethral strip, compensation should be allocated, believes Chantale Dufour, one of them.

Ms. Dufour had not been informed of the risks when she had her suburethral tape fitted in 2011, she argues. And despite two partial withdrawals in Quebec and a complete withdrawal in the United States, it is still suffering.

“Dr. Veronikis, he cured her 90%,” said her husband, Richard Prémont. Ms. Dufour can now walk, which was not the case before this operation. But, she laments, “I’m in pain all the time.”

In Canada, four class action lawsuits have been filed against manufacturers of suburethral tapes. One of them, against the company Coloplast, is underway by the firm Lambert Avocats. In 2019 and 2020, two other lawsuits – against American Medical Systems Canada Inc and Boston Scientific – resulted in settlements of more than $20 million in compensation to all people in Canada who had these types of strips fitted, regardless of the mode of surgery or the complications experienced.