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Found 49 results
  1. Content Article
    Getting 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.
  2. News Article
    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
  3. News Article
    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
  4. News Article
    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.
  5. News Article
    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
  6. Content Article
    What health condition affects some 200 million people around the world, yet remains woefully misunderstood, underfunded, and barely addressed in medical-school curricula? Endometriosis is a disease that the World Health Organization estimates affects 1 in 10 women and girls globally. And yet the National Institute of Health allocates a whopping 0.038% of its research resources to the disorder. Endometriosis, which involves tissue similar to uterine tissue growing elsewhere in the body, has myriad symptoms, including GI distress, migraines, discomfort during sex and abdominal pain that can range from debilitating to excruciating. Countless women miss days of school and work, lose their jobs, and suffer depression as a result of the illness. Experts say endometriosis could be the underlying cause of 50% of infertility cases. L Despite efforts to raise awareness, it persists as an underground topic, and many doctors are ill equipped to help those afflicted or don’t even believe their patients. “It’s a perfect storm of undervaluing women and women’s health, inequities in health care, menstrual taboo, gender bias, racial bias, and financial barriers to healthcare,” said Shannon Cohn, the director of Below the Belt: The Last Health Taboo, a searing one-hour documentary set to premiere on PBS.
  7. Content Article
    In this interview, we speak to sociologist Dr Marieke Bigg about why she decided to write her debut non-fiction This won’t hurt: How medicine fails women. Marieke discusses how societal ideas about the female body have restricted the healthcare system’s approach to women’s health and describes the impact this has had on health outcomes. She also highlights areas where the health system is reframing its approach by listening to the needs of women and describes how simple changes, such as allowing women to carry out their own cervical screening at home, can make a big difference.
  8. Content Article
    In this article, published by British Vogue, Alexa Chung shares her experiences of endometriosis and the barriers and attitudes she faced in seeking a diagnosis and treatment.
  9. Content Article
    This report was prepared by the Endometriosis Task and Finish Group and submitted to the Welsh Government on 16 April 2018. Authors propose a robust care pathway based on NICE guidance using a life course approach to ensure that symptoms are recognised and responded to promptly and appropriately, as they emerge. 
  10. Event
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    The Everywoman festival is a one day event aimed at all women over the age of 16 and aims to empower women to understand what is normal and when to seek help for issues that can affect 90% of women at some point in their life. The festival combines more than 40 workshops and 6 themed seminar sessions with a fun, relaxed environment with art workshops, food and drink, music and charity stands. Themes are wide ranging and include periods and endometriosis, pelvis pain and bladder, childbirth injury, menopause and sexual wellbeing. Additional drop in sessions to meet the consultant experts as well as book readings and signings will be available on the day. The Everywoman Festival will be held in the heart of Cardiff in the beautiful venue of Insole Court. It will feature a range of interactive workshops and talks from leading health experts. Attendees will have the opportunity to learn about everything from nutrition and fitness to mindfulness through art. For those who are looking for something a little more active, there will be a variety of fitness classes and workshops taking place throughout the day. From seated yoga, Pilates to Belly dancing and dancing lessons from Heels empowerment, there's something for everyone, regardless of their fitness level. Charities attending with stalls and information include Coppa feel, Endometriosis UK, Womens Aid, the Menstrual project and Fair Treatment for Women of Wales. Health stalls from Muslim Doctors Cymru, Medtronic, Mcgregor, THD will be on hand to provide information and signpost for everything from your bladder and bowels, childbirth to high blood pressure. Some of the highlights of the festival are the wellness market, where attendees can shop for a wide variety of health and wellness products and in the creative market products from artists such as Black and Beech, Melin Trygwynt and Eliza Eliza. Further tickets and information Follow on instagram @Theeverywomanfestival A5leaflet Everywoman (2).pdf
  11. News Article
    “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
  12. Event
    Join the British Society for Gynaecological Endoscopy for an endometriosis Q&A session with experts from across the UK. Hosted by Carla Cressy, questions can be put to the panel via the @theBSGE instagram page and the Endometriosis Foundation website. It will cover a wide range of topics from diagnosis to fertility to thoracic and adolescent endometriosis. Register
  13. News Article
    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
  14. Content Article
    In 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.
  15. Content Article
    In this blog, Gurpreet Kaur, who had to use a wheelchair for five years due to the severity of her endometriosis, talks about her firsthand experience of gender bias in pain management. She recalls sexist and inappropriate comments made to her by male healthcare professionals, describing how they belittled her pain and treated her as a 'hysterical woman'. She also highlights that research clearly demonstrates that women of color are more disproportionately affected by dismissals of their pain.
  16. Content Article
    This opinion piece in the New Scientist looks at the persistence of the gender pain gap and highlights research that demonstrates its persistence in healthcare systems. An increasing number of studies have shown how bias against women’s expressions of pain negatively affect diagnosis and treatment of their health conditions; misinterpretations of female pain as anxiety contribute to women being around 50% more likely to be misdiagnosed after a heart attack. It also looks at how women who are Black, Asian or from ethnic minority backgrounds experience more underestimation of their pain by healthcare professionals than white women. The author argues that gendered myths about pain have had a powerful impact on centuries of scientific and biomedical advances.
  17. News Article
    An 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
  18. News Article
    A 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
  19. Content Article
    Is good-quality health care being provided for women in prison? As the government proceeds with plans to build 500 more prison places for women, this new Nuffield Trust analysis uses HES data to look at women prisoners' use of hospital services, finding that they face a series of challenges and risks in prison because of barriers to accessing health and care services.
  20. Content Article
    The government has published the first ever Women's Health Strategy for England to tackle the gender health gap.
  21. News Article
    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
  22. Content Article
    Painful menstruation—dysmenorrhea—interferes with the daily life of around one in five women. This blog looks at why painful periods receive so little research attention and examines the impact this has on women's lives and health. Sharing a personal story of her own painful periods, the author discusses how doctors are quick to prescribe birth control pills and antidepressants to treat painful periods, rather than investigating the problem to find out whether the cause of pain is endometriosis, a condition where endometrial tissue forms outside the uterus. It is thought that around 10% of ovulating women in the US have endometriosis and it takes an average of ten years for accurate diagnosis. The author discusses the need to raise the visibility of dysmenorrhea and endometriosis so that medical research takes it on as a serious issue.
  23. News Article
    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
  24. Content Article
    This 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.
  25. News Article
    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
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