The moment Sally Walker woke from pelvic mesh surgery in 2009, she knew something was wrong.
A specialist had recommended mesh to treat her double pelvic organ prolapse. The New Zealand woman, now 77, remembers being told it was the “gold standard”.
“It would change my life and everything would be great,” she tells The Weekly.
Instead, the surgery left her bleeding heavily and feeling “worse and worse”. Over the next three months, she repeatedly returned to the surgeon but was told there was nothing wrong and that it was all in her head. He then stopped taking her calls.
So she stopped asking for help. “If I’m not going to be believed … I’ll just get on with my life.”
For eight years, that is what she tried to do. Sally kept working in a job she loved, supporting women experiencing postnatal depression and families with twins or other multiple births. But behind the scenes, her health was deteriorating.
She lived with pain, wore continence underwear and pads every day and only ventured out if she knew a bathroom was nearby. “I knew where every public toilet was.”
Sally became, in her words, a “master of disguise”. She would excuse herself to change her pads and sometimes “have a little cry” in the bathroom before returning to help another family.
“You lose your dignity,” she says.
But eventually it became impossible to push through. Sally was in severe pain, struggling to urinate and had developed sepsis. A urologist investigating her symptoms discovered that the mesh had penetrated her bladder. When he came out of theatre, Sally recalls him asking in disbelief: “Who did this to you?”
After years of living in pain, Sally was “absolutely relieved that it wasn’t in [her] head”.
She was referred to Auckland urologist Dr Eva Fong and had several operations to try to save her bladder. But after another serious episode of sepsis, she had her bladder removed. Two years and three more operations later, she had her vagina surgically closed.
It was the first time Sally had stopped to think about what the surgery had taken from her. “This is final … that part of me is gone.”
Seventeen years on, Sally still lives with the consequences. She had to give up the job she loved and has not been able to be intimate with her husband.
“I have a pity party day occasionally where I just think, ‘Why me?’” she admits.
But those days are few and far between. “I’m just lucky to be here because I have had a couple of instances where I nearly haven’t been.”
The questions doctors don’t always ask
Sally’s experience is now helping change the questions women are asked after pelvic floor surgery.
Dr Eva Fong, who leads the Urological Society of Australia and New Zealand’s Female Urology Specialty Advisory Group, explains that many existing postoperative questionnaires focus on physical measures, such as how often a woman leaks, how many pads she uses or whether she feels a vaginal bulge. On paper, a procedure could look successful because a woman’s original symptoms have improved but that does not show how surgery has affected the rest of her life.
“I don’t think a patient would call that a success if they ended up with new pelvic pain and lost their jobs,” Dr Fong tells The Weekly.
Following a 2017 safety review, transvaginal mesh products used solely to treat pelvic organ prolapse are no longer approved for use in Australia. Mid-urethral mesh slings for stress incontinence remain available.
Dr Fong and Monash University researchers developed the questionnaire with women who have lived experience, including Sally. It is intended for women having pelvic floor surgery for incontinence or prolapse, and those living with unexpected outcomes from earlier procedures.
It asks about women’s treatment goals and how surgery has affected their work, social and family life, intimate relationships and psychological wellbeing – not only their physical symptoms.
“You will never find something you don’t ask about or look for,” Dr Fong emphasises.
When something doesn’t feel right
Dr Fong warns certain symptoms and changes after pelvic floor surgery should be investigated, not accepted as part of recovery.
New or persistent pelvic, vaginal or leg pain is one of the biggest red flags. Other warning signs include difficulty urinating or emptying the bladder, needing a catheter for longer than expected, new urinary urgency, sudden heavy leakage, recurrent urinary tract infections and pain during sex or loss of sexual function.
For her own patients, six weeks is an important marker. While recovery will be different for every woman, “all pain should be gone by six weeks,” Dr Fong notes.
If a woman feels her concerns are being dismissed, Dr Fong encourages her to seek another opinion. “Sometimes people just have to knock on a different door.”
Helping other women be heard
Today, Sally lives outside Auckland and advocates for more than 200 women who have experienced mesh complications. They call her before making decisions about procedures, when they need help navigating support systems or when they want to speak to someone who understands.
“They can ring me and say, ‘I’ve got a pain here,’ and I know instantly where it is, and I can just talk to them.”
Helping other women has helped Sally move forward too. “To be honest, it’s helped me get on,” she says.
She hopes the new questionnaire will give women a way to explain how surgery has changed their lives.
“If it had been there when I first went to the specialist, it would’ve helped me tremendously,” she adds.
Her advice to other women? “No one knows your body better than you do.”
