The Yentl Syndrome

• Heart disease
• Stroke
• Autoimmune disease
• Dementia
• Cancer

Handling your health

• Helping women be heard
• Who’s an expert on your body?
• Menstruation
• Pregnancy
• Infertility
• Menopause
• Mental health

Surgical mesh is a medical device implanted to support organs in various procedures. Thousands of women in the UK had mesh surgically implanted to treat pelvic organ prolapse and stress urinary incontinence, until its use was suspended due to safety concerns in 2018.[1] Surgical mesh has been linked to a wide range of serious health issues including chronic pain, incontinence, painful sex, recurrent infections, loss of mobility and autoimmune diseases. Prior to the suspension, women injured by mesh had been raising concerns about the safety of the procedure for years and campaigning for change through patient groups including Sling the Mesh.

In 2020, the Independent Medicines and Medical Devices Safety (IMDDS) Review’s report, ‘First Do No Harm’, highlighted the lack of research evidence about safety aspects of pelvic mesh, the failure of the health system to listen to women injured by mesh and a lack of awareness among healthcare professionals about mesh complications.[2] One of the key recommendations of the report was that the Government should establish specialist mesh centres to offer comprehensive treatment, care and advice, including removal surgery, to women harmed by pelvic mesh implants. In response, the NHS has now established ten specialist mesh centres across the UK—nine in England and one in Scotland.[3] However, these specialist centres are beset with problems, preventing women harmed by mesh from receiving desperately needed treatment.

Specialist mesh centres - what are the patient safety issues?

1. Long waiting lists

The mesh specialist centres have unacceptably long waiting lists, with many women being told they won’t have an initial consultation for at least a year. Kath Sansom, founder of Sling the Mesh, said, “So many women on our Sling the Mesh Facebook page are reporting really long waiting lists to be seen for a first consultation—they feel hopeless about ever getting appropriate support and treatment for their complications.”

2. Lack of awareness among healthcare professionals

Many healthcare professionals are simply not aware that mesh specialist centres exist. This is leading to women being told that nothing can be done for them, and that they are “too complicated” to deal with.[4] Addressing MPs in a Westminster Hall debate in February 2022, Alec Shelbrooke MP, co-chair of the Surgical Mesh All-Party Parliamentary Group, stated that “GPs are unaware of mesh complication centres and the referral process.”[5]

3. Surgical training inconsistencies

In a previous blog, Patient Safety Learning and Sling the Mesh outlined concerns around inconsistencies in training for surgeons performing mesh removal which is undermining women’s confidence in the specialist centres.[6] One woman also told us, “[a surgeon] did offer to remove the mesh, but I just didn’t feel confident in his care as he had only done 15 mesh removals before, and not on a regular basis.”[7]

4. Centres being run by surgeons who implanted mesh

Many women are reluctant to be treated by surgeons who spent years inserting the devices that have caused them so much suffering. Many members of the Sling the Mesh Facebook group have reported that surgeons who originally implanted their mesh did not take their concerns seriously. However, when women requested a second opinion, the mesh was often found to be causing obvious, visible damage, including slicing through nerves, the bladder and the vaginal wall, causing infections and pulling organs out of position. This breakdown in trust between surgeons and their patients undermines women’s confidence in the centres set up to treat their complications.

5. Lack of understanding about autoimmune complications

A large number of women with surgical mesh implants report developing symptoms of autoimmune conditions such as lupus and Sjögren's syndrome following the surgery.  In addition, around 50% of members on the Sling the Mesh Facebook group report suffering from fibromyalgia symptoms—although fibromyalgia isn’t currently officially recognised as a autoimmune condition, emerging studies are beginning to recognise a connection.[8] There have been small studies into the link between mesh and autoimmunity,[9] but much more research is needed to understand the issue and ensure women with these symptoms can receive appropriate treatment.

Many women report that when they tell healthcare professionals about their symptoms, the link between mesh and autoimmune conditions is not acknowledged and little support is offered. This lack of understanding is present in specialties that deal with autoimmune conditions, such as rheumatology and immunology, as well as mesh specialist centres. Autoimmune conditions can have a major impact on health and quality of life, and this is another area where women feel that the specialist mesh centres are failing to deal with the devastating effects of surgical mesh.

6. Lack of appropriate after-care

There is no guarantee for women who receive mesh removal surgery that it will improve their symptoms, and many feel that mesh centres are not offering enough post-operative support. Kath Sansom told The BMJ, “There is either very little or no aftercare, leaving some women having to go to their local [emergency department] with dangerous issues like pelvic blood clots or sepsis.”[5]

How will specialist mesh centres overcome these issues?

The Government and NHS leadership must recognise these issues and find ways to address both the shortage of provision and the lack of trust many women have in specialist centres. This will certainly involve bigger investments in training for surgeons, awareness raising amongst healthcare professionals and measures to address the damaged relationship between women and the healthcare system.

There also needs to be consistent, joined up logging of women’s outcomes following removals. This would establish a trusted database that highlights which surgeons and centres are performing well, and who needs additional training.

Another way to offer more timely care is to look beyond the NHS and give women more choice in where they have removal surgery and who assesses their case. The Scottish Government announced in July 2022 that NHS patients in Scotland would be eligible for funding to travel to a clinic in Missouri, USA for transvaginal mesh removal surgery.[10] The Scottish Government also has an existing deal with a Spire Healthcare facility in Bristol that allows Scottish women to access mesh removal surgery. The message from Scottish Health and Social Care Secretary Humza Yousaf MSP to women seeking removal surgery was that “we won’t put up any unnecessary barriers in your way.”[10] However, this option is not yet available in other parts of the UK, and some women have expressed concerns about travelling on a long haul flight after major, complex surgery. There are also worries about how aftercare would work if there were complications from a surgery performed outside of the UK.

Establishing specialist mesh centres was only the first step in addressing the issues women face in getting the support they need. It is vital that the Government and NHS increase their efforts to ensure all women have fast and equitable access to mesh removal surgery.

References

1  Devlin H. Government halts vaginal mesh surgery in NHS hospitals. The Guardian, 9 July 2018
2 First Do No Harm. The report of the Independent Medicines and Medical Devices Safety Review. Independent Medicines and Medical Devices Safety Review, 8 July 2020
3 Vaginal Mesh Complications. The British Association of Urological Surgeons website, last accessed 3 August 2022
4 Community post: Doctors shocking comments to women harmed by mesh. Patient Safety Learning , 22 June 2022
5  Wise, J. Specialist surgical mesh centres are not working, MPs are told. BMJ, 4 February 2022
6 Mesh Complications Training Pathway: Patient experiences must be recognised. Patient Safety Learning & Sling the Mesh, 17 February 2022
7 “There’s no problem with the mesh”: A personal account of the struggle to get vaginal mesh removal surgery. Patient Safety Learning, 1 May 2022
8 New study shows Fibromyalgia likely the result of autoimmune problems. Kings College London website, last accessed 1 September 2022
9 Cohen Tervaert, J. Autoinflammatory/autoimmunity syndrome induced by adjuvants in patients after a polypropylene mesh implantation. Best Practice & Research Clinical Rheumatology. 2018:32:4;511-520.
10 Dewar, C. Mesh patients to be able to travel to US for removal surgery. STV News, 12 July 2022

Related reading

Doctors’ shocking comments reveal institutional misogyny towards women harmed by pelvic mesh - a Patient Safety Learning blog
“There’s no problem with the mesh”: A personal account of the struggle to get vaginal mesh removal surgery
‘Mesh removal surgery is a postcode lottery’ - patients harmed by surgical mesh need accessible, consistent treatment

Within the next 10 years, the Women’s Health Strategy for England will have:

• boosted health outcomes for all women and girls
• radically improved the way in which the health and care system engages and listens to all women and girls.

It will achieve this by:

• taking a life course approach
• focusing on women’s health policy and services throughout their lives
• embedding hybrid and wrap-around services as best practice
• boosting the representation of women’s voices and experiences in policy-making, and at all levels of the health and care system.

It will bring together everyone across the healthcare system to act as the catalyst for the long-term change we all want to see.

The strategy builds on 'Our Vision for the Women’s Health Strategy for England', which was published in December 2021, and sets out ambitions for improving the health and wellbeing of women and girls in England based on the life course approach, and resetting how the health and care system listens to women.

This strategy sets out how it will go further with the 6-point long-term plan for transformational change:

1. Ensuring women’s voices are heard – tackling taboos and stigmas, ensuring women are listened to by healthcare professionals, and increasing representation of women at all levels of the health and care system.
2. Improving access to services – ensuring women can access services that meet their reproductive health needs across their lives, and prioritising services for women’s conditions such as endometriosis. Ensuring conditions that affect both men and women, such as autism or dementia, consider women’s needs by default, and being clear on how conditions affect men and women differently.
3. Addressing disparities in outcomes among women – ensuring that a woman’s age, ethnicity, sexuality, disability or where she is from does not impact upon her ability to access services, or the treatment she receives.
4. Better information and education – enabling women and wider society to easily equip themselves with accurate information about women’s health, and healthcare professionals to have the initial and ongoing training they need to treat their patients knowledgably and empathetically.
5. Greater understanding of how women’s health affects their experience in the workplace – normalising conversations on taboo topics, such as periods and the menopause, to ensure women can remain productive and be supported in the workplace, and highlighting the many examples of good practice by employers.
6. Supporting more research, improving the evidence base and spearheading the drive for better data – addressing the lack of research into women’s health conditions, improving the representation of women of all demographics in research, and plugging the data gap and ensuring existing data is broken down by sex.

The strategy goes on to set out its approach to priority areas related to specific conditions or areas of health where the call for evidence highlighted particular issues or opportunities:

• menstrual health and gynaecological conditions
• fertility, pregnancy, pregnancy loss and postnatal support
• menopause
• mental health and wellbeing
• cancers
• the health impacts of violence against women and girls
• healthy ageing and long-term conditions.

Asked to share the worst things doctors have said to them, members of the 9,600-strong Sling The Mesh support group responded by sharing a huge number of outrageous comments; comments that are belittling, misogynistic and demonstrate the scale of mass institutional denial. These accounts are not limited to one doctor, specialty or area, they concern surgeons, consultants and GPs from across the UK.

There will be many doctors shocked and horrified by the comments shared by mesh-injured women, but there are clearly those whose attitudes and behaviours are completely unacceptable.

Comments made by doctors included:

• asking one woman who could no longer have vaginal sex because of extreme pain to consider anal sex
• women being told they shouldn't be having sex over 50
• women being accused of exaggerating their pain or being an “awkward patient”
• being told to go home and have a glass of prosecco, and that “at least they don’t have cancer”
• being told “your husband should be pleased” with the results of the surgery
• suggesting women were neurotic and sending them for psychiatric assessments. One woman who reported this response was later found to have brittle plastic mesh slicing through her vaginal wall, causing agonising pain.

Kath Sansom, founder of Sling the Mesh, shared these accounts with us, saying, “These comments are loaded with arrogance, lack of compassion and a failure of empathy, and they offer a shocking picture of the failure of individuals in the healthcare system to listen and respond to women. They have all been made by doctors, in the face of a clear evidence base for the avoidable harm caused by surgical mesh.”[1][2]

Patient Safety Learning has included all of these comments in this community post, without attribution to ensure confidentiality. They are shocking and disquieting to read.

Evidence of harm and the IMMDS Review

It was patients themselves who first raised the alarm about mesh complications and lack of adequate support. Following years of patient-led campaigning, their battle to be heard and taken seriously finally saw a measure of success when pelvic mesh was included in the Independent Medicines and Medical Devices Safety (IMMDS) Review in February 2018, chaired by Baroness Julia Cumberlege.

The IMMDS Review’s report, 'First Do No Harm', was published in July 2020 and highlighted the lack of research evidence about safety aspects of pelvic mesh, the failure of the health system to listen to women injured by mesh and a lack of awareness among doctors about mesh complications.

Women still aren’t being listened to

The First Do No Harm report recommended a system of redress for women injured by mesh, but this has not materialised. Instead, they face ongoing medical gaslighting for injuries that have resulted for many in pain, loss of sex-life, marriage breakdown, job loss and permanent disability.

The comments shared in this blog relate to women’s experiences over time, and it’s clear that the NHS still has much work to do to address the inequality and misogynism they demonstrate.

In April 2021 the Government held a call for evidence to inform the development of its proposed Women’s Health Strategy. In December they published a policy paper setting out the Government’s vision for the new strategy.[3] It highlighted the need to tackle the fact that the health system still too often does not listen to serious concerns raised by women.

This will require further investigation of themes such as the quality of conversations and shared decision making, the role of information, education and training for healthcare professionals and how to embed changes within clinical practice. In their policy paper, the Department of Health and Social Care states that:

“We will publish a strategy that will set out more detailed delivery plans against each theme and against specific health needs and conditions, aligned with this vision. In the strategy we will set out concrete proposals both on issues that only affect women and girls, and on issues that affect everyone but where there are sex-based differences in prevalence, experience, or outcomes. This strategy will be published in spring 2022.”[3]

Helen Hughes, Chief Executive of Patient Safety Learning said, “Sex and gender bias in healthcare pose a serious risk to patient safety. We believe that women, and patient groups representing women, must be given ample opportunity to voice their concerns and to be listened to, believed and their concerns acted upon. . At the heart of this equality issue is the demand that women are treated fairly and with dignity. There must be zero tolerance of the dreadful misogynistic behaviour experienced by these mesh injured women, victims of avoidable harm.”

Related reading

“There’s no problem with the mesh”: A personal account of the struggle to get vaginal mesh removal surgery
‘Mesh removal surgery is a postcode lottery’ - patients harmed by surgical mesh need accessible, consistent treatment
A year on from the Cumberlege Review: Initial reflections on the Government’s response (Patient Safety Learning, 23 July 2021)

References

1 E McFadden, S Lay-Flurrie, C Koshiaris et al. The long-term impact of vaginal surgical mesh devices in UK primary care: a cohort study in the CPRD. Clinical Epidemiology. 4 August 2021
2 Tervaert, J. Autoinflammatory/autoimmunity syndrome induced by adjuvants in patients after a polypropylene mesh implantation. Best Practice & Research Clinical Rheumatology. 1 August 2018
3 Our Vision for the Women's Health Strategy for England. Department of Health and Social Care. 23 December 2021

Westminster Hall debates give Members of Parliament (MPs) an opportunity to raise local or national issues and receive a response from a government minister. Any MP can take part in a Westminster Hall debate.

Waiting lists for gynaecological services

Key points raised in this debate included:

• Emma Hardy MP noted that gynaecological waiting lists across the UK have now reached a combined figure of more than 610,000—a 69% increase on pre-pandemic levels. She stated that the number of women waiting over a year for care has increased from just 66 in February 2020 to nearly 29,000 two years later, at the end of April 2022—the highest number ever recorded.
• Lyn Brown MP highlighted concerns about hysteroscopy procedures and access to pain relief, noted that many patients are left with “the choice of either having the procedure without pain relief or waiting months to have it with pain relief."
• Feryal Clark MP talked about the postcode lottery of gynaecological waiting lists across the country, noting that “there has been an 89% rise in the north-west, a 97% increase in the midlands and a 144% increase in the east of England”.
• Emma Hardy MP stated that though specialist mesh treatment centres had opened, these have been “beset with problems over access, waiting times and cancellations”.

Related reading

RCOG - Left for too long: Understanding the scale and impact of gynaecology waiting lists (6 April 2022)

• One in ten women who worked during the menopause have left a job due to their symptoms.
• Eight out of ten women say their employer hasn’t shared information, trained staff, or put in place a menopause absence policy.
• Almost half of women haven’t approached their GPs and three in ten have seen delays in diagnosis.
• Only four in ten women were offered HRT in a timely fashion.

The report calls for:

• Employers to have menopause action plans
• Make flexible work the default
• Implement a public information campaign and invite every woman in to speak with her GP about menopause at an appropriate age
• Ensure GPs receive mandatory training to help diagnose menopause earlier.

In 2005, while in a consultation about an unrelated problem, my gynaecologist asked me whether I ever experienced incontinence. When I said that occasionally I did, very slightly, while exercising, he suggested I have a transvaginal mesh inserted while I was having a coil fitted. It would “future proof” me against incontinence and I would be in and out of hospital in a day. So without thinking much of it, I agreed to the surgery. 

That was a mistake that I have bitterly regretted for the past 17 years; I have never been well since I had that surgery. Straight afterwards, I had a UTI, the first of a continuous string that sent me back and forth to the GP for antibiotics. I developed severe pain in my pelvic area and incontinence, and my symptoms changed so many parts of my life. I could no longer take part in the exercise I loved, sex was very painful and I had to retire early because I felt I couldn’t do my job well anymore. The medications I was taking for the pain and incontinence made me so spaced out, and led to an incident where I fell and broke my foot. After that, I decided to stop taking them, leaving me without relief from the awful pain.

It took me a while to link my symptoms to the mesh. The surgeon that originally carried out the surgery told me “the mesh is all intact” and dismissed my issues as being psychological.

It was only when I googled “transvaginal tape” that I came across Sling the Mesh, a support group for women with complications from mesh surgery. I discovered that thousands of people were in a similar boat - this small piece of mesh was destroying people’s health and lives.

I visited my GP and asked whether she thought my symptoms could stem from the mesh, and she referred me to a gynaecologist. When the doctor examined me, I could tell something was wrong, but she didn’t say much, referring me on to a specialist mesh clinic. It was a relief to be referred, but after seeing the mesh specialist surgeon I didn’t feel very reassured. I felt he, like so many doctors before him, dismissed the amount of pain I was in, telling me there were “no significant abnormalities.” He did offer to remove the mesh, but I just didn’t feel confident in his care. He had only done 15 mesh removals before, and not on a regular basis.

So I went back to my GP and she referred me to a different mesh centre hundreds of miles away to get a second opinion. I initially had a private consultation with the surgeon, and he immediately identified that the tape had become twisted in my pelvic floor, which was the source of my issues. He gave me a full explanation of the surgery and its risks, and I felt much more confident to undergo the procedure at this centre. Privately, the wait was two months, but I don’t have the money to fund such an expensive operation, plus all the associated costs. On the NHS, I was told to expect to wait six months.

We’re now at that six-month mark and I have been chasing the hospital to find out what’s going on. I recently found out I am not on the waiting list yet but will need to have my case assessed by a multidisciplinary team that meets once a month. Before me in the queue for discussion are 24 other women, so I don’t know when my case will be reviewed and whether I’ll need any further investigations before I can have surgery. It’s not knowing that’s really hard - if the hospital communicated what was going on, it would reduce my stress and make the wait much easier to bear. I understand the pressures the NHS is under at the moment, but this lack of information and clarity is really unhelpful for everyone. The hospital told me that they have appointed a Mesh Coordinator who is due to start soon - I hope that improves communication with patients.

The variance between mesh centres concerns me. I know it will take time for surgeons to gain the skills they need to carry out mesh removal effectively, but I experienced very different responses and attitudes from the surgeons I saw at the two centres.

Although I’m desperate to have the mesh removed, I’m also worried about aftercare. There doesn’t seem to be much information out there about recovery, or what to expect. It is a complex procedure that involves picking the mesh away from your flesh. Having been damaged once, I feel very nervous about what the outcome of the removal surgery might be, but I don’t feel that I have any choice other than to get it done and try to get some of my life back.

Further reading

‘Mesh removal surgery is a postcode lottery’ - patients harmed by surgical mesh need accessible, consistent treatment
A year on from the Cumberlege Review: Initial reflections on the Government’s response (Patient Safety Learning, 23 July 2021)
Regulatory flaws: Women were catastrophically failed in the mesh, Primodos and Sodium Valproate tragedies