Pain and other complications of pelvic mesh: a systematic review of qualitative studies and thematic synthesis of womens accounts

Initial coding of content of results and discussions of all studies, drawing both on directly reported participant comments and on researcher commentary, provided 101 codes. These were collapsed and grouped by the researchers collaboratively. Subthemes were named as far as possible using quotations. The final themes and subthemes, with content, are shown in box 1, and the studies contributing in table 2.

Box 1

Thematic analysis

The main themes are in bold and underlined. Subthemes use as heading a quotation from a mesh-affected woman in one of the studies

Subthemes show constituent codes, the most frequently occurring in bold, and the least frequent in grey. Positive comments that belong in the code are prefixed and suffixed by a ‘+’.

Broken body, broken mind

‘my life is never going to be the same’

  • this is my life now, ‘new normal’

  • permanent problem, ruined life, reduced quality of life

  • impact on identity, changed as a person, perspective changed, life on hold, lack of fulfilment

  • chronic pain, descriptions of extreme pain, lower back pain

  • not able to function, lost trust in body, feeling broken

  • grief, loss, feeling robbed

  • bladder problems, pain, dysfunction, discharge, repeated infections, abnormal bleeding, bowel problems, incontinence; practical issues associated with bleeding, discharge, incontinence

  • comorbidities, cascading health issues, fatigue, tiredness, consequences of medication, sleep disruption, weight gain

  • shame, embarrassment, loss of confidence, impact on self-esteem, hopelessness

‘I can’t achieve very much’

  • being or doing less than before surgery

  • activity and physical limitations, loss of mobility, daily difficulties, limitations on daily life, worsening after activity, not being able to sit or stand, not being able to do housework, restriction on travel

  • disability, feeling like a burden, loss of independence

‘It has left me feeling lost, extremely anxious’

  • anxiety, mental health affected, distress, suicidal feelings, depression, feelings of frustration and anger, emotional volatility, ‘emotional wreck’, guilt, self-blame, unhealthy coping mechanisms, for example, alcohol

  • having psychological treatment, counselling, therapy

‘You can’t have that [sexual] relationship with someone screaming in pain’

  • loss of intimacy, impact on sex affecting relationship, penetrative sex as impossible, dyspareunia

  • generic sexual problems, avoidance of sex

  • partner feels mesh during sex [validating]

  • Linked to both broken body and distrust of doctors

‘I am frightened if I take it out; I am frightened if I don’t’

  • fear of future problems and future surgery, uncertain future

  • multiple operations or hospitalisation to fix subsequent problems, wishing for mesh removal, remaining mesh, mesh as alien, foreign in the body, mesh erosion

Distrust of doctors and medical industry

‘She suggested that it was such an easy fix’

  • feeling misinformed about some or all risks, not knowing, being lied to, ‘quick fix’, benefits overstated, lack of informed consent and informed choice, feeling ‘sold’ on mesh, regret surgery

  • lacked or wanted more discussion of alternatives to surgery

  • preoperative expectations of improvement after surgery, recovery taking longer/being harder than expected

  • feeling dehumanised, ‘human guinea pigs’

‘you’re the only person I’ve seen who is complaining and thinking you have problems’

  • dismissal of patient concerns, ‘it’s all in your head’, ‘there is nothing wrong with you’

  • doctors not taking responsibility for the problem, doctors not giving attention needed, lack of empathy, insensitive medical professionals

  • doctors blaming women

‘I trusted fully all I was told’/‘I was in a very vulnerable position and felt unable to say no.’

  • trust lost

  • should not have put trust in doctor, importance of patient–provider relationship, power dynamic in patient–doctor relationship

‘All that I ask is honesty’

  • health system as understandably fallible—no time, doctors as people—etc; wanting more transparency, wanting acknowledgement of what has happened

  • adverse event need to be logged, problems with mesh described as ‘unusual’ by doctors, medical professionals needing more education on mesh

  • looking for information.+positive interactions with medical professionals+

‘I have beaten cancer, but mesh [has] beaten me’

  • victims of mesh, medical companies

  • trauma, medical trauma, PTSD, mesh should be banned

  • danger—potentially fatal

  • litigation, financial compensation desired, battle to obtain financial compensation

Broken life

‘My children needed their mother back’

  • relationship with grandchildren and children affected, impact on family, relationship with partner affected, dynamic changed

  • +family is reason for living, my family and friends keep me going; support from partner+

  • unsupported by partner, breakdown of relationship with partner

‘people get bored with it, and they’re not interested, and you sort of get dropped’

  • isolation, loneliness

  • not being listened to, not being believed, suffering in silence, people don’t want to hear about it

  • social relationships and friendships affected, social life affected, preventing new potential relationships

‘I am unable to work … I miss being able to contribute’.

  • impact on career, loss of job, having to take time off work, financial burden of being able to work

  • financial burden of treatment, medication, supplies

Keeping going —‘a changed future’

  • wanting to help others, concern for others with mesh complications, being able to relate to others with the same condition

  • +successful mesh experience+, how women judge their surgery, what is judged as success

  • +positives that have come from vaginal mesh; positive hopes for the future+

  • vaginal mesh community being upsetting

There was a strong sense of double betrayal in women’s accounts: feeling misled about the likely success and possible harms of the original mesh insertion surgery, and not offered alternative nonsurgical interventions; then not being believed or treated with adequate care when they reported problems post-surgically. The main themes, broken body, broken mind and broken life reflected in some detail the extent and severity of adverse effects from the mesh. Chronic pain was prominent, as was incontinence and other bladder, bowel and wider health problems. These were interwoven with frustration at the limitations imposed by pain and incontinence, and a powerful sense of loss of family and social relationships. Closely related to both of these was the sense of distrust of doctors and the medical industry engendered by the original decision about mesh insertion and by the uncaring response to symptoms and problems that followed. Some women felt deliberately misled by doctors, mostly surgeons, but many contextualised their experience in lack of knowledge and information among the medical profession, and in their fallibility. Despite a few positive comments about interactions with doctors, the avoidability of the disastrous experience left many women bitter about having agreed to mesh insertion.

A fourth and somewhat separate theme concerned adjustment to the situation, keeping going—a changed future. This contained ways that women had made meaning from their experience, such as activism on behalf of and advocacy for women with mesh complications. Some of the comments about positive experience were apparently spontaneous, but others were elicited by leading questions.30

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