Guest post by Kath Sansom, founder of the Sling the Mesh campaign. Content warning: mention of self-harm
For background on the vaginal mesh scandal, read my article for Patient.info: Should vaginal mesh surgery be banned?
After 21 years of harm, the truth is finally being exposed about the vaginal mesh implant scandal.
And it is not pretty.
It is a story of a high profit product, mass marketed on the basis of flimsy evidence, aggressively pushed by sales reps wielding glossy brochures and free lunches and lapped up by surgeons and an NHS system that never properly monitored outcomes for more than two decades.
In the case of incontinence mesh sling tapes, consultants enjoyed their new 20 minute day case fix. It was easier to perform than old fashioned surgery, the Burch colposuspension – the tried and tested fix, which took at least two hours, high levels of skill, and meant surgeons had to do ward rounds to check on patients for the next three days.
With this new mesh wonder gadget, however, women were in and out in less than a day. No more annoying early morning ward rounds, because by then women were at home and, in theory, getting on with life.
BUPA’s fee checker also shows that surgeons are paid £40 less to perform the 3hr Burch (£548), compared to £589 for the 20 minute tension-free vaginal tape (TVT, also known as ‘vaginal mesh’). The incentive to fix women with mesh is obvious.
When mesh kits hit the shelves it seemed almost too good to be true. As a journalist of nearly 30yrs experience I lose count of the amount of press releases I have read from police with the immortal line of “if something seems too good to be true it usually is.”
And so it is with the mesh kits.
They created a need that previously wasn’t there. Women with mild incontinence, who would have previously had physiotherapy or just popped in a Tena lady pad, were now encouraged to see this day case surgery as the answer to their sneeze pees prayers.
Just under 3,800 women a year had the Burch operation in the late 1990s to fix incontinence. But, once mesh kits were ingrained into surgeon consciousness, that figure dropped to 276 a year by 2008.
By comparison, the number of TVTs put into women went from 214 in 2000 to 11,365 a year by 2008.
Were we suddenly becoming a world with a female pant wetting and prolapse epidemic, or was aggressive marketing impressing into medicinal culture this “feel” that women needed to go under the knife for a lifestyle fix?
The big corporations and shareholders had latched on to the value of a vagina, and of this sudden need to fix it with a bit of plastic. Profit is a key driving force. Mesh is a money spinning phenomenon.
Paying the price are thousands of women living in excruciating pain, many with broken or failing relationships, stuck at home, or struggling to get through their day at work, wondering how they can carry on yet having no choice. Downing cocktails of prescription drugs, often washed down with a shot of alcohol, to numb the pain.
Others, especially older women with no IT skills or access to social media, are left in limbo for years, being told they’re a mystery patient, the only one suffering after a mesh operation.
Sex lives trashed, urine infections so bad the burning is unbearable, many becoming dangerously resistant to antibiotics, spiraling closer to sepsis risk.
We are seeing a growing number of women speak out about the affect this had on the mental health and wellbeing of their children. Young people have had to become carers as women loses the ability to raise their young ones. Teenagers feeling confusion and anger at what has happened to their parent. Paying the ultimate price are some of these women’s daughters, who are self-harming, watching their mums become shadows of their former selves.
The women too are self-harming, taking razors or knives to their arms to slash out their frustration. One woman took a piece of broken glass to try to cut out her mesh implant from her vagina – such was the level of her pain, anxiety and distress at not receiving help.
All because they had incontinence or prolapse, usually from having babies. What a terrible price to pay for being a mum.
Add to this the huge scale of institutional denial by surgeons, who signed an oath to do no harm.
Over and over again, women join my support group saying their surgeon vehemently denied that their new pains and shattered lives had anything to do with their mesh implant operation. Instead, they blame it on host of other issues including back pain, menopause, endometriosis, IBS. One woman was sent for a hip replacement, another had her gall bladder removed. Did it fix the pain? Of course not.
I’ve heard other stories of pain being blamed on depression, or bruising that needs to settle (the operation had been over a year previously). In Dubai, a woman was told by an angry consultant that she was making it up to get out of her household chores.
One surgeon, Paul Hilton, says it is “highly regrettable” that the TVT was launched on the basis of virtually no evidence. It’s a throwaway empty apology from a retired gynaecologist, who ran the first and biggest trial comparing the old fashioned Burch colposuspension to the shiny new TVT mesh sling in 2002.
His study with Karen Ward, now a trusted removal surgeon in Manchester, put the boot into the old fashioned Burch. Without this study the Burch would have probably moved on to being perfected via a key hole approach.
Instead, this research looked at how many Tena pads women used after their operation and their speed of recovery, as opposed to asking about new long-term pain or complications. It failed to capture the impending doom of mesh. The research was sponsored by Johnson and Johnson – the very people making the TVT mesh. Marking their own exam papers by proxy? I would say so.
The study is yet to report 10 year outcomes. I doubt this will happen. Mesh is made of plastic. It can shrink, curl up at the edges, twist; fragments can fall off. It can take years for problems to cut in so, by the time a decade is up, we as patient safety campaigners know that the TVT will fare much worse in terms of women’s suffering.
Where is the ban the Burch movement? It does not exist. Yet globally there are scores of mesh campaign groups, full of women suffering from an operation that was supposed to improve quality of life – but instead has totally decimated it.