Transvaginal Mesh Case Record Review

Chapter 7 - The Lived Experience of the Women

Introduction

7.1 This chapter considers the legacy of experiences that the participants in this Review have described to us. It is not easy to fully portray an experience lived by another person but we have had the benefit of being able to draw upon many hours of recorded transcripts of conversations between ourselves and the women who participated in the review. Sometimes a phrase or expression perfectly captured the essence of a point made so, where possible, we have included words and quotations from the women themselves. We also appreciate that this journey, for many, continues and the final chapter of this Report considers how their care is being managed at present, and how it may be managed in the future. Although it is not possible to alter something that has already been experienced, understanding its legacy and impact may help those providing care and complex mesh services to meet the needs of those who are referred to them.

7.2 Although no two people are exactly alike, our conversations showed that many of the women had a journey or experiences in common. The following paragraphs represent emergent concerns: themes and language that participants used repeatedly when reflecting on their personal experiences.

Emotional experiences

7.3 For women who have to manage more severe forms of urinary incontinence, the impact is relentless, for, if left untreated, it will usually continue to get worse. Often this may be viewed as a side effect of a vaginal delivery when giving birth or an inevitable part of growing older^[174] and some women become very resilient and adept in finding ways to manage their condition. Urinary incontinence requires continuous practical management to stay dry and there is a constant worry of leakage. This can have a significant impact on self-esteem, dignity, and quality of life.^[175] For some women, having to discuss their symptoms may cause embarrassment, awkwardness and shame.^[176] For all of these reasons and more, women may avoid seeking help with symptoms, and often endure their incontinence for many years before seeking help.^[177]

Changing perceptions of self and personal loss of health and wellbeing

7.4 A significant and one of the most poignant themes arising from our conversations with women was the profound bewilderment that accompanied any discussion of their health and wellbeing.

‘I’ve lost my self-worth, my self-esteem, me and everything. I don’t even know who I am. There’s nothing now. I missed my son’s graduation. I’ve missed out on family occasions. All aspects of my life.’

7.5 Many talked about living with both physical loss and psychological restrictions, and the challenges of not only having to adapt, but to try and come to terms with these. Participants described how these have directly impacted upon aspects of life including intimacy, family, social and professional life.

‘It’s so hard when you were a professional woman who has raised a family, ran a home, part of society to just be this insignificant little nothing and, the thing is there are some family and friends who think “What’s she moaning about now?” You get left behind. It’s like “I’m not going to ask her to come on that girlie holiday”. I wouldn’t go anyway because I wouldn’t be able to cope but you just feel left behind then. In a lot of areas in your life. It is really a rippling effect.’

7.6 Social isolation features predominantly in some cases. This would not have been helped by living with the consequences and restrictions imposed by the Covid-19 pandemic, but there were practical consequences too. Managing incontinence often took additional time and careful planning in order to feel sufficiently confident and comfortable to leave their home and engage in social interaction.

‘If you try to do something it’s how long’s the journey, where’s the nearest toilet, are the facilities going to be clean. In the car, I’ve got a bag and it’s permanently packed with clean trousers, pants, wipes even down to the fact that I take shoes with me because if it goes it goes into your shoes and you think people must wonder why I’ve always got a small holdall thing in her car. It goes everywhere with me.’

7.7 Some described less willingness to take part in family or social events because they did not want to offer an explanation about their decreased mobility.

‘I was invited to a wedding and I’m making sure I’ve got my crutches, rather than the chair because people then think you’re rude.’

7.8 friendships with someone who faced similar challenges was often easier than mixing with strangers and having to provide an explanation why they couldn’t sit comfortably for extended periods, or having to account for impaired mobility. A number of women that we spoke to referred to loss that other women had experienced. They described feelings of guilt that their own circumstances did not seem so bad.

7.9 The effort of engaging in family/social activities often left some women having to contend with days of feeling exhausted;

‘[Family time]- It’s my time back again and if it’s a day that we have with [family] followed by two days in bed then that’s what it’s going to be.’

‘People only saw the times when we turned up at Parliament and we would say, you know, you put your face on, you put your persona on, you put on your nice clothes- you’re not in your pyjamas, you’re not doing any of that stuff and people only see that. So, we can all project an image.’

7.10 More positively, many spoke of the benefits of friends and family who provided ‘a bridge’ between pre-ill health and the present.

7.11 Loss of job and professional life was a significant blow for many women and came up time and time again;

‘…to get my dream job and suddenly have that taken away from me. It left me just feeling really angry and I still have that. I just miss it so much.’

‘I can’t walk and yet my career is the one thing whenever I talk about it I end up crying and [a friend said] “You’ve adapted. Basically, you can still go and see your Mum but you drive instead of walking, but your career was ripped away from you and you were never able to go back”’.’

7.12 Part of this was also the impact on their financial independence;

‘I’m going to be 60 next January and I’d have thought that I’d still be working and building up for retirement as opposed to getting out early with very little pension… In fact, I’ve spent my pension to pay for the translabial scan.’

Support and Management of emotional wellbeing

7.13 Some of the women we spoke to are now reaching a point in their clinical care where they are being advised that there is nothing else that can be done for them surgically, or if a revision surgery is performed then this may result in a return or increase of previous symptoms.

‘It would appear in my case removal will worsen my situation almost definitely and my best bet is just to learn to live this way.’

‘I am feeling a little lost if I am honest. What a mess and what I would truly give for a time machine.’

‘I have to accept that this is what my life is like now and move on”. …It has been a rollercoaster of physical pain and emotional pain and I think sometimes we can deal with the physical pain to a degree but the emotional pain takes a lot longer to heal.’

7.14 Such acute accounts concerning a loss of identity is, regrettably, not a new or unique phenomenon, and experiences of those suffering and living with a chronic illness have been well documented elsewhere and for many decades now.^[178] Recent and more specific studies have drawn attention to the experiences that women have reported following mesh surgery.^{[179] [180]}

7.15 Understanding and acknowledging such loss should inform conversations around availability and nature of support to work with women to try and help them re-establish what they consider to be an acceptable quality of life. Emotional support needs to be provided to help develop and readjust to a different sense of self. Some of the participants had or were receiving emotional support through psychological counselling. All believed that whilst not always emotionally easy, engaging in counselling had been beneficial.

Insomnia

7.16 Nearly all of the women we spoke to described having trouble sleeping.^[181] The extent and reasons for this varied significantly. One participant described that she usually did not sleep at all throughout the night until dawn brought some relief and ability to sleep. Others spoke of a number of women reaching out to each other on email providing a support network throughout the night. The administrator and I regularly received emails from participants that were sent in the small hours of the night.

Weight management

7.17 Matters relating to weight management and support arose in two contexts. The first was in relation to whether or not a woman should have been offered transvaginal mesh surgery if she had a raised body mass index (BMI). The Panel are unaware of any current literature which indicates that weight is either a contraindication or may contribute to a poorer outcome. We observed that a study in 2020^[182] to evaluate guidelines on the use of vaginal mesh implants, found that only two guidelines recommended weight loss.^[183]

7.18 Two participants discussed whether they should have received mesh surgery given that they had a raised body mass index (BMI) at the time.

7.19 In the case records that the Panel reviewed, we saw no documentation of a specific discussion regarding weight management or support for women to lose weight prior to surgery. This is not to say that there may not be more general good reasons to offer weight management and support prior to any surgery taking place.^[184] We did discuss as a Panel that it would generally be considered sensible advice to try and achieve as healthy a weight as possible prior to any major surgery because it reduced risks from the anaesthetic risk, clots and infection.

7.20 The second area referred to was management of weight post-surgery. All but one of the participants spoke about having reduced mobility although the extent of this varied significantly. For some, this impeded the ability to exercise as they had done previously and for others, the issue was about the impact that increase in weight had on their self-esteem and wellbeing. A number of women felt that they would benefit from exercise and dietary support and advice.

Pain

7.21 There is extensive literature^[185] providing clinical accounts for the potential causes of pain following mesh including alternative surgery for vaginal prolapse.^[186] For the purposes of this Report, the focus will be on how the participants described their pain to us, their experiences of the communication and management of their pain.

7.22 All 19 participants spoke of experiencing pain. Some described pain in a specific area of their body - such as their groin, hips, pelvis. Others reported widespread pain and unexplained lethargy and some women were subsequently diagnosed with fibromyalgia.^[187] The Panel note that a recent study from Kings College London, suggests that fibromyalgia is an autoimmune disorder^[188] and that the National Institute for Clinical Excellence (NICE) recognises fibromyalgia as a potential complication following mesh surgery.^[189]

7.23 Some pain was acute (lasting less than 12 weeks), and some was chronic (lasting more than 12 weeks). The pattern of the pain also varied, with some women describing continuous pain and some describing intermittent pain. The nature of the pain also varied, with some reporting the pain as ‘sharp’, or ‘stabbing’.

‘My pain never goes. I’ve always got pain in my groin, in my back and nerve damage in my legs’.

7.24 Women spoke of their difficulty in processing and recollecting information, attributing it to the side effects of the pain medications that they were taking. The consequences and effects of the medications were often distressing and disruptive to daily life.

‘You can imagine how I struggle having to take morphine. I don’t want to live on opiates. It’s poison at the end of the day.’

7.25 Many expressed a keenness to keep the use of medication to a minimum where possible. Others spoke of being proud and an appreciation of their circumstances if they had been able to achieve this.

‘I hate taking painkillers or anything like that. The fact that I was on this long term that was getting into my head as well and I didn’t want to be taking this for the rest of my life. I managed to wean myself off the Oxycodone over a matter of a few months but I still had to keep the other stuff going until I had the operation and then I managed, through the Pain Clinic, to get off the Pregabalin so I’m back to no painkillers now!’

7.26 Pain permeated into all aspects of the participant’s lives. Looking to the future, one participant explained;

7.27 The management of acute and chronic pain differ. Chronic pain is defined as pain that carries on for longer than 12 weeks despite medication or treatment.^[190] Acute pain tends to be of a shorter duration and as a result of a trauma, for example, surgery or injury, and is sometimes defined as a warning of disease. Regardless of whether the pain is acute or chronic, there is extensive literature about the importance of the healthcare professional acknowledging and accepting that the patient is in pain.^{[191] [192]} It is widely recognised that patients respond better to care and treatments if they feel believed and validated. ^{[193] [194]}

7.28 As we have noted already, women we spoke to, did not feel believed or validated. But it was broader than that, -they were frustrated, angry and despondent because they felt that the cause of their pain had not been resolved. On reviewing participant records, in the majority of cases, the Panel observed that participants had often undergone numerous appointments and investigations, but that often these had been inconclusive, and although treatments had been tried, their pain continued unresolved leaving participants uncertain and confused.

7.29 The Panel recognised that impact of loss of trust had negatively impacted on the perception of whether or not their pain was being taken seriously. The Panel also recognised that a lack understanding of why investigations were being done, or treatments were being tried, would also contribute to this perception. Communication could be improved in this regard. This will be discussed in Chapter 8 of this Report.

Recognised Diagnostic Challenges

7.30 The Panel are aware that of the 18 women who had their case records reviewed, stress incontinence was often only one of several urogynaecological issues that the participants were suffering from. It was often difficult to disentangle these issues from our review of the case records, and indeed the Panel recognised that they can be difficult to disentangle in real life too, for example when seen in a specialist clinic. In addition to urogynaecological problems, many of the participants also experienced symptoms in other parts of their body, and sometimes across their whole body. The Panel recognised that it is not always possible to make a conclusive diagnosis of what is causing more generic symptoms, such as pain, and, as has just been discussed above in this chapter, this can cause acute distress and frustration for patients.

7.31 All surgery will produce scarring as part of the recovery process, and this can cause a degree of nerve pain, which will normally resolve over time. The critical question, is how much above and beyond the normal scarring process does the insertion of foreign material into the body either accelerate or cause those nerve pain symptoms? It is not known. A second point is whether there are any patient groups that would retrospectively suggest a higher susceptibility to adverse outcomes in terms of pre-existing conditions? The Panel recognise that further research is needed in this area.^[195]

Member of a mesh support group/organisation

7.32 About three quarters of the women we spoke to had some form of association with a mesh support group;^[196] the nature and extent of that association varied from person to person. Two women asked us if their case records specifically indicated that they had such an association. On the case records made available to us for each of these women, both sets of records did note an association.