health

'What's my life worth?' A common surgery left Linda suicidal.

The following deals with thoughts of suicide. For 24-hour mental health crisis support, call Lifeline on 13 11 14.

Linda Schulz and her teenage son live in crisis accommodation. Four rooms, crammed into 50 square metres. They rely mostly on charities for their food, and Newstart to help pay for other necessities.

It wasn’t always this way.

Linda, a single mother and former media executive, has been unable to work since experiencing complications from a 2016 surgery designed to treat urinary incontinence.

The Melbourne woman had been fitted with a mesh ‘sling’ implant, a surgically inserted device designed to prevent involuntary bladder leakage; a condition that affects roughly one third of Australian women. However, she ended up requiring multiple corrective surgeries and living with excruciating pain after the mesh eroded into her vagina.

Three years on, Linda lives with a nerve condition, suffers frequent infections and experiences intense pain in her perineum, vagina, groin and legs. She can only walk short distances, sit or stand for short periods of time, and is now totally incontenent.

“I have to stay close to a toilet, and going out is really–well, I don’t go out. And I won’t be able to have a [sexual] relationship, ever. So, that’s really hard,” the 50-year-old told Mamamia.

“It’s changed my life entirely. I’m 50, and living the life of a 70-year-old.”

Linda is among a growing number of women who claim to have experienced serious side-effects after being fitted with ‘vaginal mesh’ implants, a widespread issue that’s sparked headlines and lawsuits around the world.

What are vaginal mesh implants?

Vaginal mesh implants come in two forms.

Transvaginal mesh to treat pelvic organ prolapse: this involves mesh sheets being inserted under the bladder or in front of the bowel to prevent organs falling into the vagina, as happens to some women after childbirth.

And mid-urethral sling to treat stress urinary incontinence: here, mesh tape is placed under the urethra, like a sling, to support it and prevent bladder leakage that occurs during coughing, exercise, etc.

A diagram of a type of mesh sling. Image: Getty.
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There’s no precise information on how many of these procedures have been performed in Australia. But estimates made in 2018 suggested there have been roughly 30,000 prolapse mesh procedures and 120,000 sling operations in two decades.

It’s believed that, of those, hundreds — likely even thousands — of those patients have experienced adverse side effects from the implants, including ongoing pain.

Such is the scale of the problem that a Senate Enquiry into the issue was launched in 2017. Among the recommendations later released by the investigating committee was that doctors only use vaginal mesh products “as a last resort”.

And in November 2017, an investigation by the Therapeutic Goods Administration saw transvaginal mesh to treat prolapse banned altogether in Australia. ("The TGA is of the belief that the benefits of using transvaginal mesh products in the treatment of pelvic organ prolapse do not outweigh the risks these products pose to patients," it said in a statement.)

Linda believes better regulation is now needed when it comes to mesh slings, which are still in widespread use.

She sees inaction as a symptom of women’s health issues not being taken seriously by regulators and the medical community.

“It seems to me that it doesn't matter how many times they hear stories like mine, they're not changing anything. It’s beyond frustrating,” she said.

“What's my life worth?”

She is among several Australian women who have engaged law firm Slater and Gordon to pursue legal action against individual medical practitioners over “inappropriate use” of vaginal mesh devices.

Slater and Gordon Senior Associate Kate Fisher said in a statement that the practitioner who installed Linda’s mesh sling had failed to appropriately investigate her condition and whether mesh was the best solution in the circumstances.

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“There were other, less-invasive options that could have been offered to Ms Schulz. We believe that Ms Schulz was not an appropriate candidate to undergo this procedure, considering her gynecological symptoms,” she said.

“Currently, there is very little regulation surrounding the use of transvaginal mesh and women are effectively being used as guinea pigs as the long-term impact is uncertain with these products. Often these women are not adequately warned of the very serious complications and risks involved in the procedures.”

Linda claims that was certainly the case for her.

"My suicidal thoughts were really bad": Linda’s story.

She was referred to a gynaecologist by her GP, after experiencing recurring bladder leakage over the course of a few months.

“My complaint was fairly trivial. It was just that I had to wear a [sanitary] liner when I went to the gym. So I thought it was a very minimal problem. You know I just thought it was a little thing that I needed to fix,” she said.

Linda claims the gynaecologist told her the issue was urgent and that she’d need surgery to fit a midurethral sling within a matter of weeks. She claims she was not offered alternative treatment options nor properly warned about risks associated with the procedure.

Linda woke from the May 2016 operation with pain in her groin area, which was still there weeks later, along with multiple urinary tract infections and abnormal vaginal discharge.

Later that year, investigation by another gynaecologist revealed the mesh was eroding into her vaginal wall, leaving an open wound that she said felt like “having a serrated edge of a knife in there”.

Linda. Image: Supplied.
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That December, she underwent a procedure to remove part of the sling.

But in the following weeks and months, more pain. This time mostly concentrated deep in the perineal area.

Barely able to walk, she had to stop work. As the bills mounted her brother kindly paid for her to see a pain specialist, and she was placed on a regime that included pain medication.

"That's the only way I could get meals done for my kids. But that's basically all I was doing, just the basic necessities. I couldn't do anything else,” she said.

Without the pain management, Linda fears she would have “probably checked out indefinitely”.

“My suicidal thoughts in that period were really bad. I was thinking, ‘What I could do [to take my life]?’ It was really bad,” she said. “I couldn't find a gynecologist to make me understand what was happening.”

In fact, she claims her concerns were dismissed by several healthcare professionals, including a top urogynecological specialist.

Linda was finally offered complete removal of her midurethral sling in 2017. But though now free of the device, she claims she’s still living with the damage it caused to her physical and mental health.

“You've got to grieve when something like this happens. You’ve got to grieve for what you thought your life was going to be like,” she said. “You don't think something like this is going to happen to you, ever. But it does. And so, over time, I think you’ve just got to accept what is and then make the best of it.”

These days she has support from social and housing workers, and undergoes physiotherapy. But she hopes that one day she’ll be able to have a better life for herself and her son.

“The way we live is terrible. I mean, I'm grateful for having a roof over our head and I'm grateful for the help that we get. But it's a pretty sad life,” she said. “I would like to think that, one day, I'll just be living somewhere where I'm semi happy...

“I’ve just got to keep doing rehab, keep sluggin’ away and hope that I'm going to improve. But there are no guarantees.”

Lifeline: 13 11 14.

For more information about vaginal mesh devices, including how to report problems and side-effects, visit the Therapuetic Goods Aministration hub page.

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