The Stories Of Women Who Have Had Mesh Implants Are Heartbreaking


“Pain is with you all the time.”

Posted on September 08, 2017, 00:14 GMT

“This is, I believe, one of the greatest medical scandals and
abuses of mothers in Australia’s history,” senator
Derryn Hinch said before an ongoing Senate inquiry into
transvaginal mesh implants.

Urogynaecological meshes, sometimes known as transvaginal
meshes, are inserted into women as a treatment option for
pelvic organ prolapse (when the connective tissue securing
the vagina and uterus to the pelvis gives way after
childbirth), or urinary incontinence.

Queensland associate professor of urogynaecology
Christopher Maher has estimated more than 200,000 mesh
implant surgeries have been performed in Australia to date.

The inquiry,
which reports in November, was set up to find out exactly
how many women have had transvaginal mesh implants and, of
those, who had experienced adverse side effects.

More than 100 women have written to the inquiry. Their
stories share much in common.

Every submission claims there was no informed consent or
awareness of the possible complications. And every submission
details a complication after the mesh was inserted.

These include: chronic and constant vaginal pain, visceral
pain with bowel movements; dyspareunia (pain during sex);
vaginal bleeding; inability to sit for more than an hour at a
time; the granulation of vaginal tissue; pain through the
glutes; inflammatory reactions; “offensive discharge”;
incontinence; leg weakness; and haemorrhages.

Dozens of women described “erosions” — when the product
enters surrounding tissue, protrudes out of a body structure
or tissue and into surrounding organs causing holes or even
haemorrhaging.

One woman had more than 12 operations to treat erosions and
attempt to remove parts of her implant which were threatening
to puncture surrounding organs.

Not one woman claims she knew the device, which is
polypropylene and non-absorbable, acted as a permanent
implant.

There are few surgeons in Australia trained to even partially
remove the implants.

In May, patients told BuzzFeed News they had flown to the
United States at huge financial cost to attempt surgery to
remove their implants.

Any discomfort borne of the initial urinary incontinence —
which in some cases was as minor as some leakage when running
down hills — pales in comparison to the daily, debilitating
and finance-draining reality of life the women who wrote to
the inquiry say they experience after an implant.

Most of the submissions detail devastating mental health
challenges women have faced having to negotiate newfound pain
and ongoing sexual, urinary and bowel dysfunction; the toll
this has taken on their finances; the forgone holidays and
relationships; the inability to play with their kids; a
complete loss of a sex life and for some, divorce.

Here are some of the most heartbreaking stories.


Just weeks after her transvaginal mesh device was inserted in
2009,
this woman was having sex with her husband when he
screamed.

“His penis had been cut,” she wrote in her submission to the
inquiry, explaining that the device had eroded through to her
vagina.

“The second time the mesh came down into the vagina wall I
was in great pain and bleeding and the third time they
removed the mesh and put in a mesh sling.

“I have extreme nerve pain in the vagina and it is now
impossible for me to have intercourse with my husband
anymore.”

The New South Wales women said she had been offered various
remedies by doctors over the past seven years including
physiotherapy, painkillers and anti-depressants.

“Who is answerable for this medical disgrace?”
she asked.

“My life is never going to be how it should be.”

In 2009, a
62-year-old former registered nurse had a mesh inserted
and sutured to treat uterovaginal prolapse.

Her muscles spasmed for years after the operation, she said —
“it felt like the front of me was being pulled to the
back.”

Her mental health deteriorated.

“My GP wrote a mental health care plan so that I can deal
with my anger about the dodgy surgery, not being able to
nurse and the effect on my sex life.”

The pain was so unbearable she planned her own suicide.

“I had decided 20 to 30 years of severe pain was more than I
could bear,” she wrote. “I had started to collect the
medications I thought I would need and had decided on the
beach I would go to for my last swim.”

She had three operations to remove the mesh and the third was
successful in removing enough that she decided not to “carry
out her plan” to kill herself.

“I still have chronic pain but at a level that I can have a
reasonable life. I am fortunate that I only need paracetamol
every day and ibuprofen when I overstep what my mesh allows
me to do.”


“My children have grown up with a mother who has spent so
much of her time in bed, and my intimate relationship with my
husband no longer exists,” a
58-year-old Victorian woman wrote in her submission.

Since the insertion of a transvaginal mesh implant for a
bladder and vaginal prolapse in 2000, the woman has spent
thousands of dollars for 12 subsequent surgeries including
the last one which cost her $8,000, she wrote.

“I’ve had severe abdominal pain, erosion of the mesh through
the vaginal wall twice … ongoing pain, bladder problems,
bowel problems, vaginal problems.

“It has been over 16 years and I was 38-years old at the time
of my initial surgery.

“I have been told by doctors that what has happened to me has
been ‘a disaster’, ‘a bloody mess’ and ‘should never have
happened’.

“This is my life now and I can only imagine what life would
have been like had I never had the mesh sling put into my
body.”

“May they rot in hell!” one 65-year-old woman
ended her submission addressed to the “pretty disgusting
human beings” who manufactured and sold transvaginal mesh
implants.

In 2008 she had a transvaginal mesh implant for a bladder
prolapse and was left in “excruciating pain”.

“It incapacitated me at a critical time as mother of three
young children and as a wife.

“There are many things I can no longer do … lost
opportunities, horrendous medical expenses, bouts of
depression, chronic pain and discomfort and continuous
bladder prolapse issues.”

The adverse side effects she said she suffered included
bladder dysfunction, nerve pain, mesh erosion, inability to
exercise without pain or discomfort, a “ruined sex life” and
“an almost failed marriage”.

She had three surgeries to remove the mesh over the next two
years.

“They should have told me that class actions were already
starting in the United States before I allowed them to put
this rubbish in my system.”

A
now 60-year-old Western Australian woman said she was
told a mesh implant “was the only option other than a
hysterectomy” to treat her uterus prolapse.

Since the surgery she has ongoing urinary tract infections,
back pain, pelvic spasms, faecal and urinary urgency and
painful sexual intercourse

Her relationship at the time fell apart “due to the anguish,
stress and the inability [for her to participate in] sexual
relationships” and her following relationship ended for the
same reasons.

She said she wasn’t told of any risks or complications
associated with the device.

Three surgeons have told her that they can’t remove the mesh
as it is “entwined with the tissue”.

“I feel I no longer can have a sexual relationship, which has
left me feeling depressed and alone.”


One
61-year-old NSW woman had a mesh implant inserted for a
vaginal prolapse at the same time as her hysterectomy was
performed in 2006. Just 11 months later she had to have
another operation to “correct the prolapse”, yet the device
continued to erode.

“I suffered severe lower abdominal pain and a very unpleasant
discharge which forced me to wear sanitary pads both day and
night for eight years due to the odour,” she wrote.

“I have not had any sexual activity for over eight years … as
it was too embarrassing to explain and as the mesh continued
to erode, it was exposed and rough so I avoided intimate
situations at all costs.”

She had an operation to remove part of the mesh.

“I no longer have the discharge but I still live in fear that
the remaining mesh may over time erode and as it is located
so close to my bowel and other internal organs they may
perforate and be life threatening.”


In one of the most recent submissions, a woman who had a
mesh inserted into her vagina for a prolapsed bladder in 2007
says she has since had 12 procedures to correct subsequent
complications.

The woman said she spent months on morphine for the pain from
the initial insertion and had multiple surgeries to deal with
parts of the device which had protruded through the vagina
and bowel.

She was dismissed from her job for being “unreliable”, which
she wrote was because she had to take so much time off for
appointments, surgery and recovery time.

“After 10 years of constant pain and 12 procedures and visits
to [a doctor] for check-ups and operations, my life has been
quite miserable,”
she wrote.

“Not to mention that my husband has had to have time off work
to look after me and our quality of life has been severely
diminished.

“I feel that this mesh was not tested enough.”

“The doctor did not tell me about any side effects or
complications,” one
woman wrote in her submission.

“I was advised it would be day surgery and I was in hospital
for two weeks.”

The complications — sleep disturbance, bowel dysfunction,
urinary incontinence and pain — have left her feeling like
the only thing she wants to do is to “crawl back into bed” in
the decade since her 2007 operation.

“I have been unable to be intimate with my partner of 40
years since the operation and this has put an enormous strain
on our relationship.”

The health problems had led to “mood swings” that caused her
to snap at her family.

“My quality of life is low, I had plans to travel to Ireland
and see where my ancestors lived but that dream has been
taken away from me.”


A
62-year-old South Australian woman said she had a mesh
device inserted in 2010 for a prolapse and incontinence issue
and has since had four operations to remove it.

“My life turned to hell [and I suffered] daily pain and
discomfort,” she wrote.

The one thing she wished women were told before receiving a
transvaginal mesh implant?

“Don’t use this product, ever.”

One woman had a transvaginal mesh implant in 2008 and has
spent almost a decade treating paraesthesia (pins and
needles), piriformis muscle pain, groin pain, sciatic pain
and foot pain.

“[My surgeon] didn’t inform me that the mesh could not be
removed by himself or any Australian surgeon if I developed
any complications,” she wrote.

“He failed to tell me that complications such as foreign body
response, pudendal nerve entrapment syndrome, painful sex,
nerve pain, faecal incontinence, bladder incontinence or mesh
erosion would be likely after surgery and would impair my
life forever. I have had all [of these] complications.”

She “felt isolated and alone”.

“My husband said it was like I was flatlining,” she wrote.

“I didn’t care if I lived or died.”

Her favourite activities — “road trips, reading and knitting”
— were no longer possible because she can’t sit for too long
without pain.

“I increased my alcohol consumption and put on 15 kilos due
to depression and then was diagnosed with fatty liver
disease.”


One woman
wrote a submission on behalf of her mother who she said
had suffered vaginal bleeding, “constant urinary tract
infections”, “chronic groin, hip and leg pain”, gluteal tears
and bursitis (inflammation
of the fluid-filled pads — bursae — that act as cushions at
the joints).

“I have lost count of the number of times I witnessed my
mother cry out in pain from leg spasms and cramps,”
she wrote.

“I believe that my mother’s legal rights and ethical rights
of informed consent, fidelity and do no harm were dismissed
and ignored by the medical company that produced her device,
the surgeon who implanted the device and the Therapeutic
Goods Association [sic] who approved this device for the
Australian market.”


A single mother from Western Australia was fitted in 2007
with an implant, since removed from Australia’s market by the
Therapeutic Goods Administration, for a vaginal prolapse.

“I have suffered with chronic pelvic and rectal pain,
reoccurring prolapse, loss of sex life, clinical depression
due to emotional trauma for numerous surgeries and pain,
chronic fatigue, nerve pain, fibromyalgia, constant sweating
just to mention a few long term side effects,”
she wrote.

The 54-year-old said she was never provided with any
information about long-term health issues or possible
side-effects.

This woman described herself as a “fairly active” wife
and mother-of-four before she had a mesh tape implanted in
2010.

“I was told at the time that this was the gold standard in
treating stress urinary incontinence and that it was a day
procedure, very safe and came with only minor risks
associated with all surgeries,”
she wrote.

What started as a “dull ache” turned into a pain so severe
that she “could barely sit” by 2016 when a surgeon operated
to remove part of the mesh.

“Almost immediately I began experiencing severe pain in my
vagina,” she wrote.

“Some days it felt like a hot knife in my vagina and the pain
also started to migrate to my bottom and my legs.

“This was attributed to the mesh eroding through the vaginal
wall.”

Her mesh was removed by a surgeon in Melbourne in March this
year.

“While feeling better … I am left with pudendal nerve
damage, fibromyalgia, inability to sit or stand for any
length of time, inability to be intimate or have sexual
relations with my husband, inability to pursue an active
lifestyle and the ability to attend sport practices, events,
movies, dinners or parent/teacher conferences due to the pain
in my vaginal and gluteal areas.

“I now spend most of my days lying on one side or the other
as to avoid direct pressure on my vagina and my bottom.”

One
72-year-old woman wrote that she had suffered for 14
years and “never recovered” after having a transvaginal mesh
implant inserted to “repair a tear in the wall of the
vagina”.

“Pain is with you all the time, I have infections and
discharge and I’ve had four erosions which put me in the
hospital where the surgeon removed pieces of the mesh each
time.

“I can feel the mesh when it moves it feels like a razor
blade inside you … the doctor said if I start haemorrhaging
to go straight to a hospital.

“I hope I get rid of this mesh one day. I’d be a very happy
healthy 72-year-old and have a normal life, what’s left of it
for me.”


This 58-year-old Sydney registered nurse and medical
clinic operator was “physically” active and loved gym
sessions, weight lifting and running before she had an
implant.

She had slight urinary leakage when she ran down steep hills
during her exercise so her doctor suggested a mesh implant.

“Because of my profession and medical history as a registered
nurse I researched the mesh and found them to be very
controversial,”
she wrote in her submission.

“My initial investigations were dismissed as the doctor
described the operation to not involve any issues.”

She had a vaginal hysterectomy at the same time.

The pain after the operation was “excruciating” but she
thought it was part of the recovery process.

Months later her gynaecologist suggested another operation to
remove some of the mesh.

“I had no choice but to have the operation even though I do
not have loss of income insurance.”

The symptoms continued and she was referred to a pain
management doctor.

After visiting a number of specialists she had six hyaluronic
acid injections to restore function in her damaged nerves but
they have offered no relief.

She is now considering a trip to the United States for a
removal of the mesh which would cost her an estimated
$25,000.

Many
other Australian women found their only option for
removal in St. Louis, Missouri, with
obstetrician-gynecologist Dionysios Veronikis,
who is now training professor Thierry Vancaillie, who
runs the Women’s Health and Research Institute of Australia
in Sydney, in mesh removal.

Veronikis
said he has performed more than 1,000 mesh removal
surgeries since 1994, and seen a rapid increase in patients
over the past five years.

The woman also wrote: “The direct medical cost and chronic
pain married with the indirect suffering of my business has
compounded to the point, any kind of blissful retirement in
my mid-to-late 60’s has most likely been robbed.

“This journey of chronic pain and discomfort has exhausted my
ambitions of living a fruitful life after the death of my
partner of 40 years.”


Women across the world have taken legal action against the
manufacturers of implants.

In the United States, Johnson & Johnson has lost at least
five jury awards totalling more than $35 million over the
mesh inserts since 2014, and earlier this year
the manufacturer was ordered to pay US$20 million to a
New Jersey woman who blamed the company’s TVT-Secur mesh for
her chronic and unresolved pain.

An
estimated 100,000 Australian women have been implanted with
Johnson & Johnson mesh devices since 2000.

More than 700 Australian women are currently in court
fighting Ethicon, a subsidiary of Johnson & Johnson, in a
class action which claims vaginal medical devices left
women “suffering painful and life-altering complications”.

The lawyers representing the women have said there could be
upwards of 8,000 Australians who have been implanted with one
of the nine devices.

Johnson & Johnson said the company’s pelvic mesh products
had been developed in “close consultation with specialist
surgeons” and were “backed by years of clinical
research”.

In its submission to the Senate inquiry, the company said the
use of implantable mesh was supported by clinical research
and was often the preferred option to treat pelvic
conditions, including incontinence and pelvic organ
prolapse.

Another 300 Australian women have registered with Shine
Lawyers for a second class action against American Medical
Systems over 10 of its different mesh implants. Shine said
the group may eventually exceed 2,000 women.

If you need to talk to someone, you can call Lifeline
Australia on 13 11 14 or Beyond Blue Australia on 1300 22
4636. Anxiety UK on 08444 775 774, or Hopeline America on
1-800-784-2433.

Gina Rushton is a breaking news reporter for BuzzFeed News
and is based in Sydney.

Contact Gina Rushton at gina.rushton@buzzfeed.com.


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