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Content Article
Endometriosis: A patient's journey (10 April 2024)
Patient-Safety-Learning posted an article in Women's health
This Medscape article tells the story of Josephine Vest, who was diagnosed with endometriosis aged 19. Now 30, she describes how her symptoms were dismissed and belittled by GPs and gynaecologists before she received a diagnosis a year after her symptoms began. With an average diagnostic delay approaching nine years across the UK, Josephine counts herself fortunate to have been diagnosed in this time frame. She goes on to describe the obstacles she faced in getting effective treatment and the suspicious attitudes healthcare staff displayed towards her. -
News Article
Endometriosis: Women in Wales waiting 10 years for diagnosis
Patient Safety Learning posted a news article in News
The wait to be diagnosed with endometriosis has increased to almost ten years, a "devastating" milestone say women with the condition. It now takes almost a year more than before 2020 to be diagnosed, according to research published by Endometriosis UK, which is setting up new volunteer-led support groups in Wales. The wait in Wales is also the longest in the UK, the research found. The Welsh government said it knew there was "room for improvement". "Nobody listened to me, and to feel like women are still going through that 20 years after my diagnosis is horrific," said Michelle Bates. The 48-year old from Cardiff was diagnosed aged 25 after suffering with "harrowing" pain from age 13 onwards - a 12-year wait. "I went back and forth to the GP with my mum, who was the only one who believed in my pain," she said. The study by Endometriosis UK, which is based on a survey of 4,371 people who received a diagnosis of endometriosis, showed almost half of all respondents (47%) had visited their GP 10 or more times with symptoms prior to receiving a diagnosis, and 70% had visited five times or more. It also found 78% of people who later went on to receive a diagnosis of endometriosis - up from 69% in 2020 - were told by doctors they were making a "fuss about nothing", or comments to that effect. Read full story Source: BBC News, 18 March 2024 -
Content ArticleGetting a diagnosis for endometriosis now takes almost a year longer than before the pandemic, according to new research published by Endometriosis UK during Endometriosis Action Month 2024. The new study shows that diagnosis times in the UK have significantly worsened over the last 3 years, increasing to an average of 8 years and 10 months, an increase of 10 months since 2020. This lengthy wait means a delay in accessing treatment, during which the disease may progress, leading to worsening physical symptoms and a risk of permanent organ damage. Endometriosis impacts the physical and mental health of 1 in 10 women and those assigned female at birth in the UK from puberty to menopause, although the impact may be felt for life.
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News Article
Women in UK waiting almost nine years for endometriosis diagnosis, study finds
Patient Safety Learning posted a news article in News
Women are waiting nearly nine years for an endometriosis diagnosis in the UK, according to research that found health professionals often minimise or dismiss symptoms. The study by the charity Endometriosis UK suggests waiting times for a diagnosis have significantly deteriorated in the past three years, increasing to an average of eight years and 10 months, up 10 months since 2020. In Scotland, the average diagnosis time has increased by four months. The report, based on a survey of 4,371 people who have received a diagnosis, shows that 47% of respondents had visited their GP 10 or more times with symptoms before being diagnosed, and 70% had visited five times or more. The chief executive of Endometriosis UK, Emma Cox, said: “Taking almost nine years to get a diagnosis of endometriosis is unacceptable. Our finding that it now takes even longer to get a diagnosis of endometriosis must be a wake-up call to decision-makers to stop minimising or ignoring the significant impact endometriosis can have on both physical and mental health.” The report includes examples of patients’ experiences, with many being told that their pain was “normal”. One said: “I was constantly dismissed, ignored and belittled by medical professionals telling me that my symptoms were simply due to stress and tiredness. I persevered for over 10 years desperate for help.” Another said she had been told she was “being dramatic” after going to her GP as a teenager with painful periods. Another said: “A&E nurses told me that everyone has period pain so take paracetamol and go home.” Read full story Source: The Guardian, 4 March 2024 -
News Article
‘Gaslit by doctors’: UK women with endometriosis told it is ‘all in their head
Patient Safety Learning posted a news article in News
Women with endometriosis who have endured years of excruciating pain are being “fobbed off” by doctors and told their symptoms are “all in their head”, leading them to give up seeking NHS treatment, new research has found. A study carried out by academics at Manchester Metropolitan University found women with the disease felt “gaslit” by doctors due to their lack of understanding of the condition. The paper, due to be published in the Journal of Health Communication later this month, also found that treatment was subject to a postcode lottery. Patients in rural areas reported travelling for hours to access a specialist with full training in the complex gynaecological condition. Endometriosis is a painful condition in which tissue similar to the lining of the womb grows around other organs inside the abdomen. It affects 1.5 million women in the UK. The study looked at the experiences of treatment and diagnosis of 33 patients and revealed how doctors’ lack of understanding of the symptoms meant women often spent years in pain before their condition was diagnosed. During this period participants were told they were exaggerating their symptoms, or their pain was dismissed as psychological. As one 27-year-old participant reported: “I feel a lot of mistrust towards the healthcare system in general, simply because I have been told that the pain was in my head, that I must have a low pain threshold or that I was in pain because I was fat.” Read full story Source: The Guardian, 21 January 2024 Share your experience of endometriosis: The Guardian newspaper would like to hear how you have been affected by endometriosis and your experience of being diagnosed and treated. -
News Article
"I'm begging for help for endometriosis"
Patient Safety Learning posted a news article in News
Living with seizures and crippling pain, Zara Corbett says she's "begging for help" as she copes with endometriosis. The 21-year-old told BBC News NI that if she had any other condition she would be receiving help. "With gynae problems, particularly endometriosis, you are left waiting for years." "Women should not be left suffering this pain, it's not good enough," the beautician said. Zara has been put into early menopause - which is one potential treatment for endometriosis. The County Down woman said Northern Ireland needed a dedicated centre to provide specialist support. "I am begging for help from medical professionals including support from a multi-agency network because we are at our wits end - life cannot go on like this," she said. Endometriosis UK, an organisation that helps women with the condition, said it was shocked and saddened that it does not see "good, prompt care" in Northern Ireland. Its chief executive, Emma Cox, who visited Belfast in May, said services in Northern Ireland were "lagging behind" the rest of the UK. "We hear of the very long waiting lists to access gynaecologists to get a diagnosis but also waiting lists to access surgeons, it's about the disease being taken seriously," Ms Cox said. Read full story Source: BBC News, 6 December 2023 -
News Article
Endometriosis: 'Women's health at bottom of Welsh NHS wait lists'
Patient Safety Learning posted a news article in News
A woman who has been waiting three years for a hysterectomy says she feels she and other women have been pushed to the bottom of the list. Jessica Ricketts, from Barry, is one of 164,000 patients who have been on various NHS waiting lists for more than a year, compared to less than 7,000 two-years-ago. But it will take another three years to tackle the backlog. Welsh government's plan to tackle long waits is due to be published later. But for Jessica, she remains in pain with endometriosis despite six gynaecological surgeries over the past 10 years and is now waiting for the hysterectomy. "Every day there's some sort of pain and I'm in pain right now," she told BBC Radio Wales Breakfast. "My fear is that the endometriosis - because obviously I'm just waiting - is now in my diaphragm, and so I get pain on my left side. "With every day almost, which used to just be cyclical and now it's gone a lot worse." Jessica is keen to see what the Welsh government's plan to cut waiting times is, but she believes women's health "seems to be at the very bottom of the pile". She added: "I think it's even more important now than ever, to really push the women's health side of things. We have it takes on average 10 years for a diagnosis of endometriosis. "As women we have to fight to even get past the GP who is severely under-trained in this department. "And it's just seems to be that because we're women. We're told that you know, just suck it up really and carry on and it needs to be a fairer system, particularly for the women of Wales and we need to stop pushing it to the bottom of the pile." Read full story Source: BBC News, 26 April 2022 -
News Article
Sajid Javid: Doctors too often ‘ignore’ women’s pain
Patient Safety Learning posted a news article in News
Doctors too often "ignore" women's pain, Sajid Javid said as he called for change in the wake of the Shrewsbury maternity scandal. Writing for The Telegraph, the Health Secretary said the wider NHS needed to do much more to listen to women, adding that too many are left in pain and ignored by clinicians. On Wednesday, the Ockenden report revealed that the deaths of 201 babies and nine mothers at Shrewsbury and Telford NHS Trust could have been avoided, citing a failure to listen to women. Mr Javid wrote: "This week we have seen the tragic reality of what can happen when women's voices are not listened to when it comes to their care. "Donna Ockenden's report into maternity failings at Shrewsbury and Telford Hospitals raises specific concerns for maternity services, but more widely we must address issues across the whole of the health and care system when it comes to listening to women's concerns and recognising their pain." In the joint piece with Maria Caulfield, the minister for women’s health, Mr Javid welcomed a "shift in the way we talk about women's health", with more open discussions about areas once seen as taboo. But the pair said more needed to be done – specifically to improve the treatment of endometriosis, an extremely painful gynaecological condition. "We must ensure all women feel confident in going to their GP when they experience symptoms of endometriosis and, when they do, that they are listened to," they said. Too many were "spending too long in pain waiting for a diagnosis, often feeling ignored by clinicians", they warned. Later this year the Government will publish a women's health strategy, which will examine issues including fertility, menopause, and prevention and treatment of diseases. Read full story (paywalled) Source: The Telegraph, 31 March 2022 -
News Article
First Women's Health Strategy for England to tackle gender health gap
Patient Safety Learning posted a news article in News
Women and girls across England will benefit from improved healthcare following the publication of the first ever government-led Women’s Health Strategy for England today. Following a call for evidence which generated almost 100,000 responses from individuals across England, and building on 'Our Vision for Women’s Health', the strategy sets bold ambitions to tackle deep-rooted, systemic issues within the health and care system to improve the health and wellbeing of women, and reset how the health and care system listens to women. The strategy includes key commitments around: New research and data gathering. The expansion of women’s health-focused education and training for incoming doctors. Improvements to fertility services. Ensuring women have access to high-quality health information. Updating guidance for female-specific health conditions like endometriosis to ensure the latest evidence and advice is being used in treatment. To support progress already underway in these areas, the strategy aims to: Provide a new investment of £10 million for a breast screening programme, which will provide 25 new mobile breast screening units to be targeted at areas with the greatest challenges in uptake and coverage. This will: - provide extra capacity for services to recover from the impact of the coronavirus (COVID-19) pandemic - boost uptake of screening in areas where attendance is low - tackle health disparities - contribute towards higher early diagnosis rates in line with the NHS Long Term Plan. Remove additional barriers to IVF for female same-sex couples. There will no longer be a requirement for them to pay for artificial insemination to prove their fertility status and NHS treatment for female same-sex couples will start with 6 cycles of artificial insemination, prior to accessing IVF services, if necessary. Improve transparency on provision and availability of IVF so prospective parents can see how their local area performs to tackle the ‘postcode lottery’ in access to IVF treatment Recognise parents who have lost a child before 24 weeks through the introduction of a pregnancy loss certificate in England. Ensure specialist endometriosis services have the most up-to-date evidence and advice by updating the service specification for severe endometriosis, which defines the standards of care patients can expect. This sits alongside the National Institute for Health and Care Excellence (NICE) review of its guideline on endometriosis. Read full story Source: Gov.UK, 20 July 2022 -
News Article
‘Worse than childbirth’: women with endometriosis call for better treatments
Patient Safety Learning posted a news article in News
Lisa Hague, 38, was diagnosed with endometriosis at the age of 17 after being in such severe pain that she resorted to taking a powerful painkiller, dihydrocodeine, that had been prescribed to her partner for a sports injury. She had an allergic reaction to the codeine and was taken to hospital. After speaking to a doctor about why she had taken such a risk, she was referred for a laparoscopy and diagnosed. “I’d never heard of endometriosis before and didn’t know anyone that had it,” she says. The diagnosis was a relief, but there were few treatment options available and she has had to manage intense pain and very heavy bleeding for a few days each month. At times, she has resorted to sitting against hot radiators or taking scalding baths to “as a distraction from the internal pain”. “It is very dismissed still at the doctors,” she says. Hague says there is a “desperate need” for better treatments so that her teenage daughter’s generation do not face the same struggle. “Things have got to have changed since I was 17,” she says. Read full story Source: The Guardian, 8 March 2023 -
News Article
I was in so much pain I’d faint — yet doctors ignored me for decades
Patient Safety Learning posted a news article in News
“You’re just unlucky,” the doctor told me. Whichever GP I saw, wherever I was, male or female, I would be asked the same questions. Do you drink alcohol? Are you sexually active? Is your underwear too tight? If I heard another woman being relentlessly quizzed like that today, I’d probably call it victim blaming." "... when you’re told, over and over, that it’s just bad luck and that some women suffer more than others, you believe it. You put your trust in the professionals. You don’t advocate for yourself because you don’t understand that there’s anything that needs fighting for." Claire Cohen, 39, had spent much of her life since her mid-teens in acute pain, begging for help. Now she’s finally been diagnosed with endometriosis, she looks at how medicine is still failing to treat a condition that can have a devastating effect on one in ten women Read full story (paywalled) Source: The Times, 13 April 2023 -
Content ArticleIn this article for iNews, journalist Sarah Graham talks to Dee Montague-Coast, who has asthma and endometriosis, and who has had very different experiences of care between the two conditions. Dee describes how she has always received excellent care for her asthma, but how she has had to endure disbelief and many investigations, tests for sexually transmitted infections and even surgeries over twenty years, before finally being diagnosed with endometriosis by a private consultant. Sarah highlights the difficulties women face in receiving diagnosis and treatment for endometriosis, in spite of it being the second most common gynaecological condition. She also highlights geographical and race-based disparities in care and treatment and outlines how attitudes towards women's pain means their symptoms are not always listened to and taken seriously.
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News ArticleAn endometriosis sufferer has said her reproductive organs are so damaged by a three-year delay for surgery, it has affected her ability to have children. Claire Nicholls, 29, has been in pain for years with the condition - which involves tissue similar to the lining of the womb growing elsewhere. Ms Nicholls said she was passed from "pillar to post" and for 10 years, medical professionals did not seem to believe how much pain she was actually in. She has stage four endometriosis, which is the most severe and widespread. "The pain can be excruciating, at times I can't get out of bed and I have also had to attend the emergency department," she said. After opting to go private, her surgeon said he was unable to see many of her organs due to the amount of scarred tissue caused by the delay in surgery. "He told me the scarred tissue and adhesions were all around my organs... they couldn't remove it all as it could have damaged other organs including my bladder - it was just too severe," she said. Northern Ireland has the longest gynaecological waiting lists in the UK, according to a professional body. It is calling for two regional endometriosis centres. The report from the Royal College of Obstetricians and Gynaecologists found 36,900 women in Northern Ireland are on a gynaecology waiting list - a 42% increase since the start of the pandemic. Read full story Source: BBC News, 25 October 2022
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News ArticleA woman says she was forced to pay around £25,000 for private healthcare to treat endometriosis after her symptoms were “overlooked” for eight years. Aneka Hindocha, 34, started voicing her concerns about painful periods when she was aged 25 but says she was initially told by doctors this was normal. Ms Hindocha, who described the pain of endometriosis as “someone ripping your insides out”, says the condition should have been diagnosed sooner but argued women’s pain often gets overlooked and ignored. Endometriosis is a very common chronic inflammatory condition, impacting an estimated 1.5 million women in the UK. An inquiry by the All-Party Political Group found that like Ms Hindocha, it takes an average of eight years to get a diagnosis. The condition sees tissue comparable to womb-lining grow in other places in the body - with symptoms often debilitating and spanning from infertility to painful periods, tiredness, pain while having sex, as well as depression and anxiety. “I was told painful periods were normal, which they are not, but I believed that at the time,” Ms Hindocha told The Independent. “I thought the issue was me. I thought I was being a hypochondriac.” Her health massively deteriorated in the summer of 2020 and she became bedbound for three days. “I needed someone to find out what was wrong with me,“ Ms Hindocha added. “I was crying I was in so much pain.” She says that two years later she still had not received her laparoscopy despite the fact her pain was getting more severe and so she ended up paying for a private scan. She finally got diagnosed with stage 4 endometriosis a week later. “By the time of having my surgery at the end of February 2022, it had been nearly two years on the NHS waiting list and I was still being told to wait.” Read full story Source: The Independent, 18 October 2022
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Content ArticleThis report by the Royal College of Obstetricians & Gynaecologists (RCOG) examines the real-life impact of long gynaecology waiting lists on women and on the wider health system. It highlights the problems that existed in accessing NHS gynaecology services before the Covid-19 pandemic, and reveals how the situation has become far worse due to the backlog of care: Gynaecology waiting lists across the UK have now reached a combined figure of over 570,000 women across the UK – just over a 60% increase on pre-pandemic levels Gynaecology waiting lists in England have grown the most in percentage terms of all elective specialties The number of women waiting over a year for care in England has increased from 66 before the pandemic to nearly 25,000 RCOG recognises that gynaecology has often been overlooked, and calls for the specialty to be given parity in recovery plans.
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Content ArticleChronic pain patients are often dismissed and told the pain is in their head. For World Mental Health Day, Glasgow Live reporter Sophie Buchan shares her first-hand experience of gaslighting. Gaslighting refers to a form of emotional abuse which involves "manipulating someone by psychological means into doubting their own sanity". This can also happen in medical settings - referred to as medical gaslighting. This is used to describe medical practitioners who blame a patient's symptoms on psychological factors, or deny a patient's illness, for example, doubting their pain because they "don't look sick".
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Content Article
Endometriosis should be considered a priority health issue (12 March 2021)
Sam posted an article in Women's health
Global healthcare systems are wrestling with the management of an increase in people requiring care in complicated diseases. Supporting patients with long term chronic conditions such as endometriosis has become an even more difficult task than before the pandemic. One in 10 women are reported to have endometriosis, and it is imperative that this is discussed as part of women’s health. Gayathri Delanerolle lived with endometriosis for over 25 years and has first hand experience of some of the associated problems which she discusses in this BMJ Opinion article, -
Content Article
Endometriosis: one woman’s story
PatientSafetyLearning Team posted an article in Women's health
It affects an estimated 176 million women worldwide, yet endometriosis can take years to be diagnosed. In this blog, published on the Boots website, Terri White, author, journalist and Editor in Chief of Empire magazine, shares her story of the pain, frustration and delays in diagnosis she has faced. She also offers advice on how to get listened to. -
Content Article
Endometriosis UK: Pain and symptoms diary for patients
Patient Safety Learning posted an article in Women's health
Keeping a record of your pain and symptoms can help you and your doctor to manage your symptoms, could help with a diagnosis and also could be used when submitting information for evidence e.g. when claiming for benefits, for work or for school/university. Endometriosis UK has produced a handy pain and symptoms diary you can use. -
Content ArticleEndometriosis is a chronic disease affecting approximately 10% of fertile women. These women often have negative health care experiences. This study from Bach et al. adds new knowledge about endometriosis care in a hospital setting and nurses’ attitudes toward the disease. To explore how the personal attitudes of gynaecological nurses, their specialised knowledge, and their clinical experiences influenced the way they conceptualised and cared for women with endometriosis, participant observations and semi-structured interviews were conducted. Categorisation of patients into certain kinds, with more or less legitimate needs, provided an important framework for practice. Specialised knowledge qualified the nurses’ views of their patients and seemed to be conducive to sustained patient involvement. However, the organisation of care based solely on medical specialisation restricted a holistic approach. An important goal is, therefore, to investigate patients’ perspectives of health and illness and to create participatory relationships with patients, regardless of their diagnosis.
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Content ArticleDiagnostic delays for endometriosis can occur as many of the symptoms are very similar to other common medical conditions. During 2018 and 2019, there were 24 incidents reported to the MDU (a medical defence organisation) which involved endometriosis. A common factor in these incidents involved a complaint or claim following an allegation of a missed or delayed diagnosis. A delayed diagnosis can lead to prolonged pain and suffering and may cause other physical and psychological problems for the patient, such as infertility, anxiety and depression. Failure to diagnose endometriosis or a delay in diagnosis is not necessarily negligent, but a claimant may have a case if they can demonstrate that a doctor's management fell below the expected standard - for example, by not adequately examining the patient, or by not considering the diagnosis when a patient presents with those signs and symptoms as described in the NICE guidance. MDU offers advice in this blog to help reduce the risk of a delayed or missed diagnosis of endometriosis.
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Content ArticleThis NICE guideline covers diagnosing and managing endometriosis. It aims to raise awareness of the symptoms of endometriosis, and to provide clear advice on what action to take when women with signs and symptoms first present in healthcare settings. It also provides advice on the range of treatments available.
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Content ArticleDo you see female patients? Do they have painful periods? Pain pre or post their periods? Painful sex? Do they suffer chronic pain, which may be intermittent or constant? Do they have pain when passing urine or with bowel movements? Is it painful to place a speculum for a smear test? Have you considered endometriosis? The Royal College of Nursing has provided a factsheet for nurses with guidance on how to recognise symptoms, setting out pathways of care and signposts to useful online resources.
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Content ArticleIn this article, Berlanda et al. discuss the safety of different medical treatments for endometriosis to relieve pain.
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Content Article
Endometriosis: Laparoscopic surgery for endometriosis
Patient Safety Learning posted an article in Women's health
This leaflet covers laparoscopic surgery for endometriosis. It provides information for women who have been offered or are considering laparoscopic surgery for the treatment of endometriosis.
