Jacqui Gibson, husband and son from Western Australia
Jacqui Gibson, 44, of Perth, Australia says her story is like many others. Three years ago she had surgery to correct stress urinary incontinence (SUI) after a hysterectomy four years earlier. Her gynecologist told her she would need posterior and anterior repair as those areas had prolapsed. He outlined her options.
“He must have mentioned the bladder sling and I said I was a bit concerned because of adverse reporting. He said it was a new one done vaginally and attached to the groin. He didn’t go into too much detail but said it was much better,” Jacqui told MDND. Her gynecologist said he would use the Johnson & Johnson Ethicon TVT O. She did her online research and found only information about old mesh products. The bladder slings had few adverse reports she found.
Gibson suffers from Psoriatic Arthritis and had been on autoimmune biological drugs but her doctor told her to take no steroid drugs for six weeks after surgery.
Jacqui Gibson and family in Western Australia
Right after being discharged from the initial surgery she told MDND she was really uncomfortable and felt sick with pain and bleeding. She couldn’t sit down properly. Day eight after the surgery Gibson says she felt quite “infectious” and went to the ER with a rapid heart beat. You must have a virus not connected with the procedure, she was told. She received antibiotics and went home. Another seven days and Gibson says she felt like she was going to die.
In just the first three weeks after surgery, Gibson went back to see the doctor three times as the pain and bleeding continued. After five weeks she still wasn’t healing well and the doctor said he left a stitch in the perineum so he took that out. Eight weeks and the bleeding hadn’t stopped with a growing pain in the abdomen and a groin that was “really, really uncomfortable” she says.
“He had me in stirrups and I started crying I said I don’t feel right. He said ‘There is nothing wrong with my job. Your husband should be happy with that.’ He was implying that the repair work was so good.”
Jacqui says her doctor grew quite agitated like she was frustrating him. “He made me feel like I was implying there was a problem that wasn’t there, like it was in your head. I felt humiliated and was emotional at this consult.”
She began to doubt herself, maybe I’m a slow healer she thought. I just have to persevere.But things didn’t improve and Jacqui says she still felt sick and fatigued. There were days she’d be okay then not really well.
“I thought it was me because I was off arthritic drugs. Maybe pain had contributed to my condition.” And her doctor attributed her symptoms to Psoriatic Arthritis.
But things got worse. Gibson says she started having a discharge of a “brown muck, not overly offensive but like a plug of something coming away. I would ring doctor and they’d do a swab and there would be nothing there.”
Jacqui says about 48 hours before the reaction she’s feel pain and sick and every time she’d rush off to the doctor who would take a swab and give her antibiotics. Another doctor, this one a rheumatologist felt it was serious and sent her to a gynecologist oncologist. He didn’t think there was cancer and asked what type of mesh was used on her. He suggested her symptoms were very characteristic of someone having a mesh reaction.
A urogynecologist was the next on her parade of doctors and he said there was no erosion and if it happened again to come in. It did and she did and the swab would show it was bacteria but no one could tell her what the discharge was or where it was coming from.
From November 2008 until September 2010 the same cycle occurred, horrific pain accompanied by a discharge.
“I had a few days I was really off, I really felt sick. I said to my husband don’t be surprised if you find me dead, I feel that bad. I woke up one morning I was so weak I thought I was dying. I was uncomfortable more than normal in the abdomen. It was during a salt bath that a black piece of “something” came out of her vagina.
“I was a bit delirious; it was like a piece of hard charcoal. I put my nail in it to break it apart I thought what the hell is that? But I was sick and I called my husband and said you better get me to a doc.”
The urogynecologist, a new doctor she had been seeing for 18 months, said she had an abscess that ruptured and the next morning in surgery he found a vaginal-rectal abscess that was pushing into the perineum area that had ruptured.
A week in the hospital followed and more antibiotics but eight week later the discharge began again as well as the pain.
Finally as a result of more research, Jacqui felt the TVT tape had to be removed. Her doctor said he would contemplate it but when he realized it was a TVT O that had been looped through the orbitor bone in the pelvis, he said it was too difficult to remove.
“I can’t live like this” Gibson told MDND, “This horrible discharge, incontinence and pain. I feel like I’m being cut in the left side in my abdomen. Getting rid of urine is slow, I think I’m hitched too high or something is not completely right there.”
“I starting to read reports from Helsinki and Russia and read a lot and now I’m saying hang on, is it the mesh? I don’t know. I wish it would have presented itself when the abscess appeared. I thought they would find it in the abscess but he didn’t.”
Jacqui Gibson is very grateful for her husband who gets the kids off to school and she’s grateful she has private insurance. In Australia, private insurance covers inpatient services in the hospital or physical therapy. Out of hospital visits are covered by the public sector with the patient paying approximately half. In just the last 12 months, she’s faced $20,000 in medical costs. Without benefits she wonders if she'd be alive.
Gibson says her current urogynecologist is very well regarded in his field and she feels confident in his care, in fact if she had not been in his care when the abscess presented itself she doesn’t want to think about what might have happened. The overall impression she’s received from many doctors in Australia is that her situation is rare and removing the device may cause more problems than it would fix.
“It’s difficult to rationalize and deal with this issue when you are told this is a rare occurrence. The vulnerability it has created leaves you feeling like you have little control over getting well.”
“I’m feeling like I’ve hit the brick wall.” #