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Showing results for tags 'Endometriosis'.
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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
Endometriosis care in Scotland not meeting 'base level'
Patient Safety Learning posted a news article in News
Clinical care for sufferers of endometriosis is not meeting "base level", according to new research seen by BBC Scotland. The debilitating condition affects 100,000 women in Scotland and is more common than diabetes, yet it takes eight and a half years to be diagnosed. Almost half of those with endometriosis are in pain most days. The study, commissioned as part of the Scottish government's Women's Health Plan, found that services were lacking. The charity Endometriosis UK said the condition costs the UK economy £8.2bn each year in treatment, healthcare costs and loss of work. It carried out the study and has recommended four main areas for improvement: Implementing National Institute for Health and Care Excellence guidelines and quality standards on endometriosis care across Scotland - the research found that this base level of care "is not currently being met". Building relationships between healthcare services through managed clinical networks to allow for smoother referrals. Increasing education in primary and secondary care levels - including GPs and non-specialist gynaecologists. Investment in a public health campaign and improved menstrual education in schools. Read full story Source: BBC News, 23 January 2022 -
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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News ArticleA woman with stage 4 endometriosis said she was told she needed to "be more positive" before her diagnosis - despite heavy blood loss and pain. Anna Cooper, from Newbridge, Wrexham, started her periods at 11 and by the time she turned 14, her mother was pushing for a referral. Since then she has had 13 surgeries, with a 14th due in the coming months. She said: "It is not taken seriously enough. It seems to be that we are just not being heard at the minute." Watch video Source: BBC News, 9 September 2021
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Content ArticleThis article discusses endometriosis and how the common treatment of performing laparoscopic surgery to remove damaged tissue may not be as effective as once thought. Lucia Osborne-Crowley writes about how experts have found that women who have the surgery don't always get better and if they do, it only lasts a short while. The article also describes what endometriosis is and how it is important not to continue encouraging women to undergo repeat surgeries as it may not improve the condition.
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News ArticleA 23-year-old woman who begged doctors to remove her womb to relieve chronic pain says the surgery is being refused due to her age and childless status. Hannah Lockhart has endometriosis, a condition that can cause debilitating pain, heavy periods and infertility. Although she has always wanted her own children, Hannah says her daily pain is now so severe she wants a hysterectomy. "It's heartbreaking that just because I'm so young I have to keep suffering," she told the BBC's Evening Extra. Ms Lockhart, from Bangor in County Down, has been in hospital seven times in the past year because of crippling pain from endometriosis. "Every single day I'm taking morphine, I'm taking different tablets for nerves to try and stop the pain and nothing works," she said. Read full story Source: BBC News, 14 April 2021
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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 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, -
News Article
8 things people living with endometriosis want you to know
Patient Safety Learning posted a news article in News
Endometriosis is not uncommon – in fact, it’s believed to affect one in 10 women/people who menstruate. Yet it’s still widely misunderstood, and those affected can struggle for years before getting proper help. Because it’s associated with the menstrual cycle (it occurs when cells similar to those that grow in the womb lining grow outside the womb too, resulting in inflammation, scar tissue or adhesions and blood-filled cysts/endometriomas), it’s often dismissed as being ‘just bad periods’. But endometriosis is a medical condition which can have a huge impact. To mark Endometriosis Month, Abi Jackson helps bust some misconceptions around this common condition. Read full story Source: The Independent, 1 March 2021 -
News ArticleNew stats from Endometriosis UK this week for Endometriosis Awareness Month reveal that 62% of women (aged 16-54) would put off going to a doctor with symptoms of endometriosis. Reasons include they don’t think it’s serious enough to bother a doctor with, they’d be embarrassed, they don’t think they’d be taken seriously, or they think symptoms including painful periods are normal. This statistic rises to 80% of 16-24-year-olds. 1.5 million UK women are currently living with endometriosis, with average diagnosis time standing at an unacceptable 8 years Endometriosis UK says it is vital that Governments, society, the NHS and workplaces wake-up and recognise the symptoms and impact endometriosis can have, and afford those with the condition the support and access to treatment they need to manage their symptoms. Commenting on the new research, Emma Cox, CEO of Endometriosis UK said: “Endometriosis is a long-term chronic health condition affecting 1.5 million in the UK, yet it still all too often considered a taboo or not important due to links with the menstrual cycle. Symptoms including chronic pelvic pain, painful periods, painful bladder and bowel movements, and infertility, can have a major, life-long impact, physically and mentally. But far too many find their symptoms are not believed nor taken seriously." “Myths such as “chronic period pain is normal” or “you must have a low pain threshold” manifesting in society, workplaces, schools, and even healthcare settings contribute to those experiencing symptoms being put off from seeking medical advice and contribute to diagnosis taking on average a shocking 8 years. “The impact of delayed diagnosis on people’s physical and mental health can’t be overstated. If undiagnosed, the disease may progress, and negatively impact people’s careers, education, relationships and all aspects of their life.” Read full story Source: Endometriosis UK, 1 March 2021
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Content Article
Getting diagnosed with endometriosis: personal stories
Patient Safety Learning posted an article in Women's health
Women share their personal experiences to Endometriosis UK of getting diagnosed with endometriosis. -
Content Article
Endometriosis UK factsheet: Getting a diagnosis
Patient Safety Learning posted an article in Women's health
It takes around seven to eight years on average for a woman to get diagnosed with endometriosis from the time she starts experiencing symptoms. Whilst this has reduced from the eleven years measured previously, it is still far too long. The symptoms of endometriosis are very similar to other common conditions. It's important to share as much information with your doctor as possible To help you prepare for a GP appointment, Endometriosis UK has produced a factsheet giving tips on what to say to your GP, what will happen at your appointment, what to do if you are not satisfied that your symptoms are being properly looked into by your GP, how to get a referral and questions to ask your GP. -
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 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. -
Content ArticleThis information is for you if you wish to know more about endometriosis. It may also be helpful if you are the partner or relative of someone with endometriosis.
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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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News ArticleIn ‘Invisible Women: Exposing Data Bias in a World Designed For Men’ author Caroline Criado Perez writes about Rachael, a woman who suffered years of severe and incapacitating pain during her period. It takes, on average, eight years for women in the UK to obtain a diagnoses of endometriosis. In fact, for over a decade, there has been no improvement in diagnostic times for women living with the debilitating condition. You might think, given the difficulty so many women experience in having their symptoms translated into a diagnosis, that endometriosis is a rare condition that doctors perhaps don’t encounter all that often. Yet it is something that affects one in ten women – so what is going wrong? Read the full article here in The Scotsman
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News Article
Endometriosis care needs urgent improvement, MPs say
Patient Safety Learning posted a news article in News
Endometriosis care across the UK needs urgent improvement and diagnosis times need to be cut in half, a report by MPs says. It found an average wait for a diagnosis was eight years and that has not improved in more than a decade. Endometriosis affects one in 10 women in the UK and causes debilitating pain, very heavy periods and infertility. Nadine Dorries, minister for women's health, said awareness was increasing but there was still a long way to go. More than 10,000 people took part in the All-Party Political Group inquiry which found that 58% of people visited the GP more than 10 times before diagnosis and 53% went to A&E with symptoms before diagnosis. The majority of people also told MPs their mental health, education and careers had been damaged by the condition. About 90% said they would have liked access to psychological support but were never offered it, with 35% having a reduced income due to endometriosis. Helen-Marie Brewster, 28, from Hull, has been told by doctors that her only remaining treatment option is a full hysterectomy. She had symptoms throughout secondary school but was only diagnosed when she left education. "GPs ask me to explain to them what endometriosis is, because they don't know. They're the ones who are meant to help." "Last year I visited the A&E department 17 times trying to find help and pain relief for this condition, even for just a few days so I can keep going. The wait time for diagnosis is so long that in that time it's spreading and doing more damage the longer it is left untreated... We can't carry on like this." Read full story Source: BBC News, 19 October 2020 Read press release -
Content ArticleAn Inquiry by the All Party Parliamentary Group (APPG) on Endometriosis has highlighted the devastating impact endometriosis can have on all aspects of a person’s life, and urges Ministers to take bold action to ensure those with endometriosis have access to the right care at the right time. The inquiry surveyed over 10,000 people with endometriosis, interviewed healthcare practitioners and those with the condition about their experiences.
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Content ArticleFor 10 years, 29-year-old historian Robyn battled extreme endometriosis pain, but was continuously dismissed by doctors when she went to them for help. She was finally diagnosed with the condition – but five surgeries later, it was clear the damage had already been done. In this article published by Stylist, she asks why women’s health issues aren’t being taken seriously enough.
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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 ArticleThis is an interview with Gabrielle Jackson, author of Pain and Prejudice: A call to arms for women and their bodies, published by the Hysterical Women website. Jackson talks about her diagnosis of endometriosis, the lack of advanced medical knowledge around women's medical issues and a need for access to better treatments.
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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.
