Life after mesh: One patient’s harrowing experience with transvaginal mesh

‘It’s all in your head’, ‘It’s part of the recovery process’.
 
For years, these were the sort of responses Justine Watson received when discussing her constant pain and recurrent pelvic symptoms with healthcare professionals.
 
But Justine knew that was wrong, and her belief was finally confirmed when she saw a consulting surgeon’s face drop as he viewed the images from her urodynamic study.
 
‘I grabbed the screen, and it was awash with blue and white. I was like, “What the f*** is that?”’ Justine told newsGP.
 
‘And he mumbled under his breath, “That’s the mesh”.’
 
By this point, Justine had been suffering for seven long years, dating from 2010 surgery to solve the stress urinary incontinence she had experienced since the births of her ‘two big babies’.
 
‘My girlfriends got together and said, “There’s surgery for that” … and I ended up doing it, but never at any stage was I told that this device is permanent and if something went wrong, it would be very difficult to remove,’ she said.
 
‘So I didn’t have that true informed consent, I didn’t jump through all the hoops of pelvic physio, pessaries, lifestyle changes.
 
‘I just went in, the quick fix was offered to me, and I trusted the surgeon.’
 
Justine began to experience adverse symptoms immediately after the procedure, but these were dismissed as the normal process of recovering from surgery. So she returned to her busy life as a psychotherapist and a parent caring for a special-needs child, but instead of getting better, she began to feel worse and worse.
 
‘Slowly, everything started to decline, and I just didn’t feel right,’ she said.
 
‘And I then did a hiatus to Bali to have some time off and got stuck there because my health went downhill, with recurrent UTIs, weird, unexplained illnesses, other infections.
 
‘By 2013, I was being hospitalised regularly. By 2015, I couldn’t get out of bed.’
 
Despite hospitalisations and constant pain, Justine’s treating health professionals could not seem to find a physical cause for her symptoms. She was even given a referral for a psychiatric assessment. And because the problems with transvaginal mesh had not yet come into the public domain, neither Justine nor her doctors connected her problems to the surgery.
 
‘I was totally oblivious [of the link], because it was this sort of slow and gradual decline,’ Justine said.

Dr Magdalena Simonis believes there are important lessons for GPs and other health practitioners in the wake of the transvaginal mesh scandal.
 
Dr Magdalena Simonis, GP and RACGP representative on the recent Senate inquiry into transvaginal mesh implants, acknowledged that at that stage it was difficult for practitioners to recognise problems with the product.
 
‘Up until the inquiry, we didn’t realise that so much of the mesh was being used … and it wasn’t always included in the letters back to us [from gynaecological specialists],’ she told newsGP. ‘
 
‘And certainly there weren’t the restriction guides that there are now, so of course there would be more of it around than we would know. Add to that – pelvic pain resulting from transvaginal mesh doesn’t necessarily happen within the first six weeks of surgery; it can develop months or even years later.
 
‘So making the association wouldn’t necessarily have been front of mind, especially when there are so many other potential causes of pelvic pain in a woman.
 
‘They’re the sort of issues I know patients have found frustrating in dealing with doctors who didn’t consider mesh as a possible cause of their symptoms.’
 
After Justine’s problems with mesh were uncovered in 2017 – the implant had skewered her urethra and embedded in her bladder – her mental health took a turn for the worse.
 
‘The surgeon said to me, “If I can remove it, it will be multiple surgeries and a high likelihood of a catheter for the rest of your life”. I was 47,’ she said.
 
‘I went back to Bali in a state of shock. And my mental health was in the toilet, because I’d been repeatedly told there was nothing really wrong with me and it was all in my head.  
 
‘So I decided, in my terribly sick and abused state, that living in sickness and the options the surgeon had given me were not really part of the plan. ‘
 
Justine made a suicide attempt which was thwarted by a friend. As she recovered, she discovered an online community of 1200 women who were also experiencing problems with mesh, and found the details of an American surgeon who specialised in its removal, a procedure she likened to ‘removing a passionfruit vine out of a chicken coop’.
 
Justine used the last of her savings to travel to the US and undergo an eight-and-a-half-hour surgery, the results of which are still less than certain.
 
‘There’s no real treatment pathway to know what is a full removal and what isn’t,’ she explained.
 
Even extracting the mesh did not spell the end of Justine’s journey. In fact, she will be dealing with the health consequences of the initial surgery for the rest of her life.
 
‘More often than not women will continue to have chronic pain, even when the offending article has been removed,’ she said.
 
Looking back on her surgery, Justine now feels as though the use of mesh and other medical devices that have turned out to be problematic was a ‘delving exercise’.
 
Dr Simonis agrees the use of the mesh implant devices was in need of greater oversight, which has finally been implemented in the emergence of multiple stories like Justine’s.
 
‘Transvaginal mesh has now been reclassified by the TGA [Therapeutic Goods Administration]. As of December 2018, it’s a requirement that patients are informed about any prosthetic and synthetic materials inserted into the body, and that it’s in their record, it’s trackable and there’s a database of what is being used,’ she said.
 
‘I think that’s a really important new initiative. And hopefully from now we’ll think twice about upscaling the use of a particular product without sufficient evidence to support its safety over time.’
 
Dr Simonis also believes there are some important lessons for GPs and other health professionals in terms of solutions for gynaecological and pelvic pain.
 
‘I think what we’ve realised is that we now need to consider gynaecological surgical procedures as a potential cause of pelvic pain, and we need to ask that specific question, rather than assume it’s either menstrual or “other”,’ she said.
 
Justine, who is now President of advocacy organisation Mesh Injured Australia, also highlights that surgery should be considered a last-resort option for conditions like pelvic organ prolapse and stress urinary incontinence.
 
‘The treatment pathway should be dealing with lifestyle, pelvic physio, diet and nutrition. Surgery shouldn’t be the first option,’ she said.
 
Dr Simonis believes there are also important lessons to learn in terms of treating patients who present with difficult-to-diagnose pain.
 
‘Not all pain is in someone’s head, and that’s the key message I think we need to take home from these stories; that patients with pain need to be taken very seriously and be given time to describe how it’s impacting their life,’ she said.
 
Even if pain is difficult to diagnose, Dr Simonis said, referral to a psychiatrist or psychologist may not be the initial best option.
 
‘It may well be making them very depressed and affecting their marriage, their relationship, and those things do need to be addressed, but that can be undertaken through the course of counselling and the therapeutic relationship,’ she said.
 
‘And while we’re exploring the other possible causes of the pain, we also need to offer a physical examination.’
 
While the increased regulation and outright ban of many transvaginal mesh products in Australia will reduce the number of victims in the future, Justine highlights the fact there are many others out there, some of whom may be yet to emerge.
 
‘When women get to menopause, they start thinking, “Oh, well, this is just old age”, but for a lot of people, it can be mesh injury,’ she said.
 
‘Up to 18,000 women are probably affected by this and that, to me, is a conservative figure, because there were 150,000 transvaginal mesh kits sold in Australia the last few decades.
 
‘I reckon 30% of that will have had an adverse effect, some not as bad as me or other people, and believe me, I’m in good shape compared to others in the community.
 
‘And I’m lucky and grateful.’

Gynaecological health Pelvic mesh TGA Transvaginal mesh Women’s health