Pain is measured on a scale of one to 10. This numerical pain rating was invented by two men in the 1970s. If you\u2019ve ever shown up in hospital or a GP\u2019s office with a hurting body part, you\u2019ll be asked to rate your pain. One is meant to be \u2018generally grand\u2019 but there\u2019s an ache somewhere, whereas 10 is a place the pain is so bad, you can hardly speak and your mind leaves your body. Going by Melzack and Torgerson\u2019s scale, for years I lingered around a six or seven on a daily basis, hitting eight more frequently than I care to admit. I was 43 when I learned that four is the number at which you pull the emergency chute and take medication.<\/p>\n
I was even older when it landed for me that living in daily pain is not, in fact, normal. <\/p>\n
My pain started in my teens, in my legs, knees and right shoulder, in addition to crazily painful, heavy periods. I was a basketball player, on a court five or six days a week, training and playing multiple games. All I wanted to do was play hoops. So when pain began to interfere with my ability to play, I was brought to a GP. There followed two years of medical evaluations, tests, probes, consultants and physios. I\u2019d take ibuprofen before a game, tape my knees, and play through the pain. Finally, when I was 19, with no real diagnosis or explanations, a consultant told me I would never run again, and, that I would never again play basketball.<\/p>\n
[\u00a0Living with endometriosis, a disease so horrible and painful, it has upended my lifeOpens in new window<\/a>\u00a0]<\/p>\n Throughout my life, I have reported pain to every medical professional I\u2019ve ever encountered. \u2018It hurts when I …\u2019 \u2018The pain moves when …\u2019 \u2018It\u2019s burning and radiating …\u2019 \u2018It feels like a hot poker …\u2019 \u2018I double over if …\u2019 \u2018It\u2019s constantly stabbing …\u2019 \u2018Please help me …\u2019 somebody help me. Please, somebody help me.<\/p>\n I was finally given a diagnosis (at age 42) for the decades of mysterious and relentless pain I was enduring. Endometriosis. A disease in which cells similar to the lining of the uterus grow anywhere. It\u2019s a whole body, systemic, inflammatory disease that is chronic and has no cure. It is one of the most painful diseases going, and the pain it can cause is unimaginable.<\/p>\n Here\u2019s a snapshot of patient descriptions shared with me by women in the endo community: <\/p>\n \u201cLike my bones were being broken from the inside out.\u201d <\/p>\n \u201cLike being on fire.\u201d<\/p>\n \u201cBeing ground through a meat-crusher.\u201d<\/p>\n \u201cIt\u2019s a feeling of pulling, as if the organs in my lower abdomen are being held up by chewing gum that\u2019s stretching down.\u201d <\/p>\n \u201cI feel like someone is twisting my organs.\u201d<\/p>\n Words like \u201cagony,\u201d \u201cdebilitating,\u201d \u201csharp and spiky\u201d and \u201cunbearable stabbing and writhing pain.\u201d<\/p>\n And then, this: \u201cmy appendix was pulled from my right side and fused to my small bowel and left abdominal wall.\u201d <\/p>\n That last one came from a woman whose pain had been dismissed and ignored in Ireland. When she sought treatment abroad, a specialist surgeon discovered the true extent of the damage inside her body.<\/p>\n Within the endometriosis community in Ireland, this is a common experience.<\/p>\n In early September, the Minister for Health, Jennifer Carroll McNeill, convened an endometriosis patient symposium at the Department of Health. The chief executive of the HSE, Bernard Gloster, and senior officials of the department and HSE were present, as well as the Minister, listening to story after story of women describe the excruciating pain of endometriosis. <\/p>\n After that harrowing day, at which we pleaded for many things, including access to pain clinics, I felt confident that relief might be on the way. It takes a long time to upskill surgeons, develop the multidisciplinary teams required to treat the disease, and put in place the other services endometriosis patients badly need (such as pelvic physios, specialist dietitians, mental health professionals). But, increasing access to relieve the worst symptom of all, pain, would surely be top of the \u201ccan do\u201d list, right?<\/p>\n Weeks after the symposium, the patients in attendance received an email from the Minister with a list of short-term action items. Not one of them was about pain clinics. The wait time for public pain clinics is up to two years. Most endo patients I asked have been waiting at least a year. <\/p>\n What\u2019s so important about pain clinics?<\/p>\n For one, they do the obvious: help with managing the pain. For those who can tolerate them, opioid medications can and do make it possible to function with this debilitating disease. For the tiny few who have access, medical cannabis can help. Part of managing chronic, severe pain is having a plan. Knowing there are tools in your belt when a flare comes is crucial.<\/p>\n Having a professional pain consultant to support patients is a no-brainer. Pain is complex and notoriously hard to manage, so why would a health service and its boss, the Department of Health, expect patients with a disease synonymous with severe pain to just … handle it by themselves?<\/p>\n Because these patients are all women. Duh.<\/p>\n On October 18th, the National Framework for the Management of Endometriosis in Ireland was launched by the Minister and Department of Health. This wordily titled Government document was, is, an outline for what the plan is to address the endometriosis crisis in Ireland.<\/p>\n And it is a crisis.<\/p>\n The framework is such a hot mess, it set the endometriosis community on fire. One of the most egregious statements contained within it \u2013 and there are so many \u2013 is about managing pain. <\/p>\n On page 14, under the subsection \u201cTreatment,\u201d the following sentence is printed: \u201cSimple analgesia, in the form of paracetamol and\/or non-steroidal anti-inflammatory drugs have been shown to be effective in alleviating symptoms of pain caused by endometriosis.\u201d <\/p>\n Simple analgesia is paracetamol. It\u2019s ibuprofen. These are incredibly useful drugs. But not for endometriosis. This has been said to the Minister, her predecessor, HSE staff, its chief executive. The inclusion of this statement in the framework is an attack on the dignity, sanity and health of endometriosis patients, not just in Ireland, but globally. With the primary, most difficult part of this disease being the complex pain it causes, why would anyone write such an insulting statement?<\/p>\n Women are living day to day, many in agonising pain, with no pain relief<\/p>\n<\/blockquote>\n Why was it included in the framework after the Minister for Health, the chief executive and senior officials of the HSE were present at the hours-long patient symposium in the Department, after they\u2019d listened to women in so much pain it would turn your blood cold? Why was it included after the Minister met patients and advocates, and, why was it included after many other women shared their testimonies with the Department in 2019, as part of the consultation process for the National Women\u2019s Health Programme? It is impossible to parse apart State failure from the pain of this disease. One feeds the other. <\/p>\n So here we have one of the most painful conditions known to medicine, and women in Ireland are currently waiting up to two years for adequate pain relief.<\/p>\n How is this even possible?<\/p>\n Maybe, and just go with me on this, maybe, it\u2019s the irrefutable, research-proven fact that women\u2019s pain is dismissed, and ignored. <\/p>\n![\"Lisa](\"https:\/\/www.europesays.com\/ie\/wp-content\/uploads\/2025\/12\/UNJO7OEKRZAAVEBLNDY2XYBORU.JPG\")
Lisa Tierney-Keogh: \u2018Women are living day to day, many in agonising pain, with no pain relief.\u2019 Photograph: Nick Bradshaw <\/p>\n![\"\"](\"https:\/\/www.europesays.com\/ie\/wp-content\/uploads\/2025\/12\/EBK5SSEK5RDXZARAH4WFDDO5ZU.jpg\")
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