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Showing results for tags 'Endometriosis'.
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News Article
Once-daily pill for endometriosis approved for use on the NHS
Patient Safety Learning posted a news article in News
A new at-home treatment option offers hope for women suffering from endometriosis. The NHS has approved linzagolix, also known as Yselty, a once-daily pill designed to alleviate the debilitating symptoms of the condition. Endometriosis affects an estimated 1.5 million women in the UK, causing tissue similar to the womb lining to grow elsewhere in the body. This can lead to a range of painful and disruptive symptoms, including severe pelvic pain, heavy periods, exhaustion, and fertility problems. The current diagnostic process can be lengthy, with NICE reporting an average nine-year delay between the onset of symptoms and diagnosis. Linzagolix offers a new approach to managing endometriosis by blocking specific hormones that contribute to the condition's symptoms. This new oral medication is expected to benefit up to 1,000 women annually, providing a more convenient and accessible treatment option. Read full story Source: The Independent, 1 May 2025 -
News Article
'We wait too long for endometriosis diagnoses'
Patient Safety Learning posted a news article in News
After seven years of doctors discounting my symptoms, Ellie Tutt joined the end of a fifty-five-week-long waiting list to find out whether she had endometriosis. About 1.5 million women in the UK, external are thought to have the condition, which causes pain and extreme tiredness as a result of tissue similar to the womb lining growing elsewhere in the body. But for many of these women, it is taking a long time to get a diagnosis. Endometriosis can cause chronic pain, heavy bleeding and, if untreated, organ damage, external and infertility. Despite this, Dr Kate Dyerson, a GP from Berkshire, said it was taking some women four or five trips to their doctor before they were taken seriously. She said: "I think there's a degree of ignorance among the medical profession as to how many women are affected." Women's medical problems had long been dismissed, she said, adding many doctors would assume a teenager was just adjusting to period pains. "I don't think it's sexist so much, I think it's that inbuilt sense that women have periods, periods are unpleasant, we don't want to talk about them, and if they hurt, well, take your pain elsewhere." Dr Dyerson said it took an average of eight years for women to get a diagnosis and felt GPs needed to get better at making referrals. Read full story Source: BBC News, 16 April 2025 -
News ArticlePeople from across the UK have shared their heartbreaking experiences of living with endometriosis - as they say the NHS is “failing” them. Living with the inflammatory condition is an uphill battle, from getting a diagnosis to navigating daily life and even accessing healthcare. For Endometriosis Awareness Month, National World launched the campaign Endo the Battle to amplify the voices of those living with endometriosis across the UK and highlight the challenges patients face. This campaign surveyed members of the public to share their stories with endometriosis. They received almost 400 responses, highlighting delays in getting a diagnosis, the crippling costs of paying for private care and knowledge gaps within the healthcare sector. Read full story Source: The Scotsman, 11 April 2025
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News ArticleA new daily pill that could transform the way endometriosis is treated has been approved for use on the NHS across England, the medicines watchdog has announced. About 1,000 women a year living with endometriosis will be able to access relugolix-estradiol-norethisterone. The “first-of-a-kind” treatment, which was initially rejected by the National Institute for Health and Care Excellence (Nice), works by blocking the specific hormones that contribute to endometriosis while providing necessary hormone replacement. The medication eliminates the need for multiple medications and regular trips to clinics for injections. Unlike current injectable treatments which can initially worsen symptoms, the pill can be taken at home, works more quickly and combines hormones in one pill. Endometriosis care has also long been recognised as substandard, with a previous report finding that on average women are waiting nearly nine years for a diagnosis in the UK. A spokesperson for Endometriosis UK welcomed the decision by Nice, adding: “Endometriosis UK believes that women and those assigned female at birth in the UK should be able to choose the right treatment and management options for them. “We recommend that treatment decisions are always made in partnership with the individual and their medical practitioner. There are far too few options available due to the historic lack of research into endometriosis.” Read full story Source: The Guardian, 13 March 2025
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Content ArticleTreatments for heavy periods, endometriosis and fibroids are available, but women and their clinicians need sufficient information to make shared decisions about care. This NIHR Evidence Collection features long-term research to underpin discussions about these undertreated conditions. Heavy periods, endometriosis, fibroids, and other women’s health conditions are a huge burden to many. Symptoms can continue for many years, make everyday life a challenge, and have a negative impact on work, school, relationships, social life, self-esteem and emotional wellbeing. Stigma and misinformation mean many women suffer in silence. Treatments are available, but clinicians and women need sufficient information to make shared decisions about care. High quality evidence comparing the benefits and risks of different treatments, alongside women’s preferences, values and beliefs, can help women receive the care that is right for them. At the NIHR Evidence webinar (November 2024), researchers presented their findings on the long-term effects of treatments for heavy periods, endometriosis and fibroids. Attendees included clinicians, members of the public, and NHS decision makers, highlighting broad interest in women’s health, and the need for information. The webinar asked: how do treatments for heavy periods compare after 10 years? which hormonal treatment best prevents pain 3 years after endometriosis surgery? which fibroid procedure has better outcomes after 4 years? This Collection summarises the 3 research projects presented at the webinar and includes video clips from the speakers.
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Content ArticleWomen’s reproductive health conditions, such as endometriosis, adenomyosis and heavy menstrual bleeding are highly prevalent in the UK. This report looks at the experiences of care women with reproductive conditions get in England. It states that many women find their symptoms dismissed and normalised by those they turn to for help. For some conditions, it highlights that accessing diagnosis and treatment can take years, leaving patients to endure pain that interferes with every aspect of their daily lives, while their conditions worsen. Key issues highlighted in this report include: Pervasive stigma associated with gynaecological and urogynaecological health, a lack of education and “medical misogyny” has contributed to poor awareness of these conditions. Diagnosis is slow not only because reproductive health conditions often have non-specific symptoms, but because of a lack of expertise and resource. Women continue to undergo harrowing experiences of painful procedures such as hysteroscopy and having a contraceptive coil fitted. This includes not being informed of the potential pain, feeling they cannot stop procedures and not having access to sufficient pain relief. This is against medical best practice and guidelines. Women’s health hubs are being established across integrated care boards as part of the previous Government’s Women’s Health Strategy for England. The model has the potential to be a positive step towards providing the joined-up care and commissioning needed to support women with reproductive health conditions but it requires funding to do so effectively. Research into women’s reproductive health conditions lags behind other, similarly prevalent conditions. It is not adequately prioritised by funders or commissioners and is not incentivised enough in clinical academia. Although there are patches of progress since the Women’s Health Strategy for England published in 2022, it has been too slow. The strategy lacks an implementation plan and resource, yet studies show that increases in funding for gynaecology services for early diagnosis and treatment provide a significant return on investment, reduces the burden on primary and secondary care settings and helps reduce sick leave and unemployment. The report makes a wide range of recommendations relating to the following areas: Public understanding of reproductive health conditions. Accessing diagnosis. Accessing treatment and support. Training and standards. Research into women’s reproductive health conditions. In relation to the Women’s Health Strategy for England, it recommends that: This should be updated to include priorities for specific, common conditions. The Government commits to reducing waiting times for an endometriosis diagnosis to less than two years by the end of this Parliament and to improved understanding, diagnosis and treatment of heavy menstrual bleeding over the same period. The Government should allocate increased, ringfenced funding to support research into the causes, diagnosis and treatment of women’s reproductive health conditions. While increased funding will in itself attract more researchers to this area, NHS England and research bodies should also consider what steps they can take to increase interest among clinical academia. The Government should publish an implementation plan for the Women’s Health Strategy for England detailing timelines, costs and resource. Related reading Failures of informed consent and the impact on women’s health: a Patient Safety Learning blog Hysteroscopy: 6 calls for action to prevent avoidable harm Medicines, research and female hormones: a dangerous knowledge gap One hour with a women's health expert and finally I felt seen The normalisation of women’s pain Sex bias in pain management decisions Misogyny is a safety issue: a blog by Saira Sundar Dangerous exclusions: The risk to patient safety of sex and gender bias Unconscious bias: gynaecological pain, the elephant in the womb! Pain bias: The health inequality rarely discussed
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Content ArticleBuilding on the findings documented in the the Royal College of Obstetricians and Gynaecologists (RCOG)’s previous report, Left for too long, the College commissioned new primary research to deepen our understanding of the size and impact of gynaecology waiting times on women and professionals across the system in the UK today. This report demonstrates that waiting lists for gynaecology in the UK have increased by a third since the previous report in 2022. Three quarters of a million women across the UK are now waiting for gynaecology treatment, and the data available nationally only captures a snapshot of the problem. The UK Government must deliver help now to improve care for women waiting: Continue to promote or expand schemes so that women can access free products to manage symptoms such as heavy menstrual bleeding and incontinence. Urgently prioritise improving communication with women waiting for gynaecology care and treatment, including giving women clarity on how long they should expect to wait. This work must include national, system and local leads from across the UK to ensure this is addressed at every level of operational delivery. Expand the accessible information and advice that is available at a national level which can be accessed on relevant NHS websites in England, Wales, Scotland and Northern Ireland. This should be co-produced with service users. Direct relevant system and local leads to urgently produce easy-to-read accessible bespoke summaries of what local networks and resources are available to women waiting on gynaecology lists so they can access additional support in their local communities, close to home. To support professionals, the report recommends that governments across the UK: Provide health services with the resources they need so they can protect gynaecology services against operational pressures, ensuring greater theatre and diagnostic capacity for gynaecology. Build, enable, and incentivise protected training time in gynaecology as part of any elective recovery plan, to future-proof care provision. Develop accessible professional guidance about supporting women on waiting lists, ensuring it is easily accessible nationally. Consider targeted funding at a national level to expedite the longest waits, to ensure equity. Work with leads at all levels of the system to develop or consolidate strategic support networks and partnerships, particularly those between primary and secondary care, to improve delivery of care. Thank all professionals at every part of the pathway working in women’s health, acknowledging the specific challenges in the wider system that are unique to women’s health. The UK Government must also act now to deliver for the future to ensure high-quality gynaecology care for every woman in the UK: Commit to expanding Women’s Health Hubs in an equitable and sustainable way so that they can be established, to ensure all women, wherever they live, can access care and support to manage their health across their whole life course. Set out how it plans to deliver, with sustainable funding attached, the future demand and supply requirements outlined in the Long Term Workforce Plan. This should include plans to recruit professionals and deliver retention measures to encourage professionals to stay in the NHS. Increase the levels of funding allocated to health across UK, including increased funding in devolved nations. Implement measures to improve education and awareness of gynaecology in wider society and create better access to education and training for professionals in gynaecology care. Consider how to build on existing digital initiatives, commit to expanding data collection in gynaecology and commit to ringfenced funding to enable research, patient participation, innovation and pilots to improve understanding and experiences of gynaecology. Further reading on the hub: One hour with a women's health expert and finally I felt seen The normalisation of women’s pain Sex bias in pain management decisions Misogyny is a safety issue: a blog by Saira Sundar
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Content ArticleChloe Bremner describes the pain she experiences from endometriosis as akin to having someone stuck inside you desperately trying to claw their way out. The 24-year-old has contended with pain from the chronic inflammatory condition since she was 14 but it was minimised, downplayed and misdiagnosed for nine years - with doctors mistaking her endometriosis for irritable bowel system and a tummy bug. Ms Bremner, who lives in Scotland, says she would routinely wake up in the middle of the night in excruciating pain. “There were countless nights and days spent in this state,” she tells The Independent. “And then throughout the years, that progressively got worse, and then it started to impact my nerves - down my legs and my hips.” “It's excruciating, and to the point where I was on morphine every day, and it didn't do anything,” Ms Bremner says. “I was still in absolute agony.” She explains that for years, nobody ever explained to her what endometriosis was, not even when she was diagnosed. “Endometriosis is a constant battle for validation and relief in a healthcare system that often fails its patients,” she says.
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EventEndometriosis, fibroids, heavy menstrual bleeding and other gynaecological conditions are a huge burden to women across the world. They cause preventable suffering and impair quality of life. These conditions can continue for many years. Women therefore need to understand the long-term effects of treatments, and how treatments compare with each other. Despite this, information is limited. Join this NIHR webinar to hear much-needed evidence on this topic. The findings will allow clinicians to discuss the long-term benefits and risks of each treatment with women, and help women decide on the treatments that are best for them. Presentations will be followed by a Q&A session. This 1-hour, online webinar will cover: How do treatments for heavy periods compare after 10 years? Which hormonal treatment best prevents pain 3 years after endometriosis surgery? Which fibroid procedure has better outcomes after 4 years? Presenters include: Jane Daniels, Professor of Clinical Trials, University of Nottingham Justin Clark, Consultant Gynaecologist, Birmingham Women's Hospital & Honorary Professor, University of Birmingham Register
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Content ArticleWhat 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.
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Content ArticleThis 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.
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Content ArticleIn 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.
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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. Hi Marieke! Can you tell us a bit about yourself? My name is Marieke Bigg and I’m an academic. I did my PhD in the sociology of reproductive technologies, looking at the way that new technologies like IVF changed the way humans reproduce and the implications that has for society. Since then I’ve started writing non-fiction. My debut book is called This won’t hurt and it’s about all the ways in which medicine is not gender-neutral—I look at research, how patients are treated, policy and funding. In the book, I show how the field of medicine has formed around a male default that excludes women. Why did you decide to write This won't hurt? I had the idea for This won’t hurt after a jarring personal experience with a doctor. I went to see a gynaecologist and shared some symptoms that he was unable to explain. But the main issue for me was that he said some quite problematic things that I couldn’t really make sense of in the moment. Sometimes these encounters feel quite insidious, they take you by surprise and you’re not always sure how to respond. But because I was doing my PhD at the time, I had formed a kind of sociological ‘toolkit’ for understanding sexism. It helped me reflect on what had happened and make sense of my own experience, and I realised how useful that sociological perspective can be when it comes to medicine. I wanted to share what I had found with other women as a way to help tackle the internalised stigma and shame that many carry when they feel that their bodies aren’t ‘normal’ or acting in a way that’s expected. Understanding where these ideas come from helps shift the feeling of blame away from individual women. As a society, what underlying views do we have about women's health, and how does this affect how certain conditions are approached by the healthcare system? There are two key ideas attached to the female body that I talk about in the book—the first is the idea of the female body as a baby-making vessel. There’s this very persistent idea that the only difference between male and female bodies is the reproductive system, and that a woman is defined by her childbearing capacity. Often when we talk about women’s health, we’re referring to obs and gynae, but we need to think about women’s health in much broader terms. This idea can also foster unhelpful complacency around the process of childbearing, for example, there’s this view that any pain women feel is just a natural part of being a woman. This has led to countless reported cases of women not receiving the pain medication they need during labour. The second idea is the idea that women have to be ‘sexy’. For many women, there is an internalised stigma around problems that are perceived to be unsexy, and that can make them feel uncomfortable to go to the doctor. Doctors also may not have a language to discuss these issues in a way that is comfortable for women. There’s a huge cluster of so-called ‘invisible diseases’ that affect women, that aren’t fatal but have a big impact on quality of life. For example, prolapse is a debilitating issue that causes a lot of discomfort, and endometriosis has come to light as a condition that requires much more research and attention. Gender inequality in medicine is really serious—there are lives at stake and it really matters that we understand and inform people about how women’s diseases present themselves. I look at an example in the book of how bias can affect how we view women’s symptoms. When men and women put the same symptoms into a diagnostic app, the algorithm told men to go to A&E in case they were having a heart attack. It told women they were suffering from anxiety. What impact would broadening our idea of women’s health have on patient safety? Researching women’s bodies across the different fields of medicine will have a big impact on patient safety. Cardiology is a good example, as women’s heart attacks can present differently to mens. There’s a lack of awareness amongst both women and medical professionals about this. A lot of the symptoms of a heart attack in women are similar to those associated with menopause, so many women have their symptoms—such as hot flashes and pain between the shoulder blades—dismissed. It’s also really important to establish the links between different fields to bring to light female-specific symptoms and causes of disease. There have been several pioneering cardiologists who have worked on the link between gynaecology and cardiology, including Dr Angela Maas, who researches the link between female hormones and the heart. Medical specialties have formed over centuries around the questions that matter to the male body—in order to improve outcomes for women, we need to put them at the centre of medicine, which means reshaping those fields. How can listening to women and taking on their views have a positive impact on patient safety? Cervical screening is a great example. It’s a relatively simple intervention that has the potential to prevent something like 70% of cervical cancer deaths. Although it’s a crucial test, a third of women don’t attend their screenings. Research into the reasons for this showed that many women don’t feel comfortable to go to the doctor to have the procedure. There’s a really simple solution to that which is being trialled at the moment, sending test kits to women’s houses. It’s a very straightforward intervention that has the potential to save many lives, and it shows that listening to women can help healthcare address their needs and improve safety in quite simple ways. What changes do policy makers need to make to their approach to women’s health? In the book, I list some quite cutting-edge research, but there are also simple bureaucratic changes that can make a huge impact. I talk about efforts in the UK to shift to a life-course approach to women’s health, which is part of that movement away from the idea of the female body as a baby-carrying vessel. When the health system understands that a woman’s health matters across her lifespan, it can identify predictable moments in her life when it can intervene to prevent health complications. Part of this is acknowledging that when a woman has been pregnant, it can have a significant long-term impact on her body. Pregnancy unmasks different vulnerabilities—for example, if you have heart issues while pregnant, you are more likely to develop heart issues later on. It’s about thinking about women’s health in a different frame, and that can change the way that we approach healthcare in sometimes quite straightforward ways. What advice would you give to healthcare professionals as they speak to women seeking help and treatment? Much of the work needs to be done before meeting with patients—it’s about being aware of research in areas that matter to women’s health. Looking outside of traditional medical academia and reading sociological studies on women’s views will further help healthcare professionals understand what’s important to their patients. Awareness of the role that biases have played in research and medical practice is also key. All this takes an investment of time, but doing due diligence to understand the social dimensions of healthcare will enable better outcomes for women. Continually questioning the assumptions you are making as a healthcare professional is a difficult challenge, but when it comes to meeting women in a consultation, doctors should take time to listen so that they really understand the problem being presented. Sometimes you will need to think outside the box about less obvious or instinctive solutions. Angela Maas was motivated to embark on her research as she found she was unable to answer her patients’ questions; she felt an ethical imperative to investigate the link between cardiology and gynaecology. When doctors take the time to really listen to their patients, they might be struck by their own blind spots or gaps in their education. It’s an uncomfortable process, but it’s crucial. Related reading Blog - The pain gap: Gender bias in endometriosis pain management (7 September 2022) “Brave men” and “emotional women”: A theory-guided literature review on gender bias in health care and gendered norms towards patients with chronic pain (February 2018) Medicines, research and female hormones: a dangerous knowledge gap Patient Safety Learning’s Top picks: Women's health inequity -
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 -
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. -
Event
Everywoman festival
Patient Safety Learning posted an event in Community Calendar
untilThe 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 -
Event
Endometriosis webinar for patients
Patient Safety Learning posted an event in Community Calendar
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 -
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 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 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
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 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.
