How did we get here?
It was way back in 1998 when mesh surgery for women was hailed as a long-awaited breakthrough. A twelve month study following up women who had received this surgery to treat symptoms of stress incontinence, those leaks that you can’t control when you cough, sneeze or indeed do any activity that puts pressure on your bladder, showed some great results. It became the ‘gold standard’ approach and was also used as an intervention for prolapse.
At the time it seemed to fit with the way surgery had advanced over the years with operations becoming more minimally invasive, allowing a faster return to activity and we all embraced it.
What do women want?
A common question a pelvic health physiotherapist will ask women when they embark on a course of treatment is what do they want to achieve? It could be to run a marathon or just walk down a hill without leaking. The main discussion is often around how to achieve that result as quickly as possible. Some women want to be dry before they would dare to venture into a gym or exercise class. They’re keen to increase their activity levels, get fitter and lose weight but the idea of obvious leaks doing star jumps in a class is just too embarrassing.
Others exercise on a regular basis but find leaks prevent them doing the sports they love. At the time pelvic mesh surgery was often viewed as a faster way of obtaining a result.
As far as prolapse is concerned one of the main symptoms described is ‘having a bulge or something pressing down in the vagina that shouldn’t be there.’ The image of a supportive tape to reinforce tissue that has become weakened and lengthened just made so much sense.
What went wrong?
It was all very wrong from the beginning! We knew there were no long term mesh studies, but the fact that the main manufacturer Johnson and Johnson knew of the danger of its product and still went ahead with deceptively marketing the devices, remained a secret. They put profits ahead of the health of millions of women. Any level of penalties they have to pay out can never give women back lives that have been completely shattered and totally destroyed.
In the clinic setting we do see women who’ve had mesh surgery but report that their continence and prolapse symptoms have returned. More disturbing are the well-documented issues of other more serious complications such as constant pain, recurring urine infections, scarring and painful sex. More sickening is the reports these women describe of the way their concerns were ignored.
I totally believe women are ‘experts’ of their own bodies. It begins with that first period, checking out the leaflet that comes with a packet of tampons, trying to work out what goes where. This long journey continues, and we all have very different experiences of pregnancy, childbirth, menopause and sometimes gynaecological surgery.
However during this journey we’re on the receiving end of ‘health care for women’, and sometimes this can feel like a brutal battleground. Sarah Graham founder of ‘Hysterical Women’ covers this subject wonderfully well in her blog article Gender bias: A threat to women’s health (August 2020).
The murmurings in the world of the pelvic health physiotherapists are could we have done more to promote what we offer? How many women hadn’t been given the opportunity to see a physiotherapist before heading for surgery? We know patients were often not informed of the possible complications of surgery but were there other omissions? What about the benefit they might have experienced if issues with a weak pelvic floor, constipation, inappropriate ways of exercising, weight, smoking and other lifestyle issues that could have contributed to their problems had been properly addressed? Did they really need the surgeon’s knife?
Where are we now?
This is where the title of this blog article comes from – it does feel like a mess. From a pelvic health physiotherapy point of view there are two main challenges.
Firstly how do we push forwards and promote ourselves so we become the ‘go to’ professionals for continence and prolapse issues? Can we re-energise and use new inventive ways of working to make ourselves much more accessible.
Surely there’s something about keeping the message simple. For many women with stress urine leaks and prolapse symptoms the issue is a pelvic floor muscle group that it is not performing as it should. Adam’s Meakins, also known as the Sports Physio’s mantra is ‘you can’t go wrong getting strong’ and this applies to every muscle in the body.
If we are going to reach the masses then starting off with clear education in schools along with fast access to face to face and online consultations, teaching women to assess their own muscles and supplying them with factual, honest information about treatments and appropriate devices is required.
Secondly how do we come alongside women experiencing issues with mesh and help them find a way forward. This is such a huge challenge. Discussions with patients often begin with them expressing anger that their symptoms were dismissed as being ‘all in their head’, a fear that they may have inside them a ‘ticking time bomb’ and understandably the often unspoken question about how physiotherapy could possibly alleviate the symptoms they are experiencing.
These women’s lives have been turned upside down. A cauldron of symptoms and ever changing landscape of emotions has replaced stress incontinence and prolapse issues. We know there is a vicious cycle attached to pain so that when it affects what we enjoy doing and prevents us managing daily activities we experience increased levels of stress, tension and anxiety. Low mood has a massive impact on our mental health. Physiotherapy has a well established place in the management of ongoing pain but we have a lot to learn about how we come alongside mesh survivors and help them work their way through this new, very different world they find themselves in.
Where do we go from here?
Perhaps a good place to begin is by reflecting on the words of Baroness Julia Cumberlege, Chair of the Independent Medicines and Medical Devices Safety Review, in the Cumberlege.
“The first duty of any health system is to do no harm to those in its care; but I am sorry to say that in too many cases concerning Primodos, sodium valproate and pelvic mesh, our system has failed in its responsibilities. We met with people, more often than not women, whose worlds have been turned upside down… by the pain, anguish and guilt they feel. Our take home message has to be that we ‘do more’ in order to ‘do no harm’.”
Forging great relationships with consultants, continence nurses, health professionals, fitness trainers and others to ensure women are supported not frustrated by the conservative approach to rehabilitation is an absolute necessity.
Embrace new ways of working which may involve stepping outside the constraints of the world of healthcare to make ourselves more visible. Pelvic Roar is a fabulous example of physios doing just that!
Finally, and this comes last because I struggle for words. How do we begin to acknowledge the seismic role the women on the receiving end of an unjust and fractured system have played? In particular the women behind the Sling The Mesh campaign who have pushed through, despite struggling with their personal daily battle. Their ongoing commitment to raising awareness and keeping these issues in focus is awesome – I salute you.
Written by Chartered Physiotherapist, Jane Appleyard.
The information on this website is written to give general information and does not in any way replace advice from your G.P. or qualified healthcare professional. If you have any specific concerns about your health you should seek an individual consultation with your G.P. for diagnosis and advice.