Endometriosis Patient Faced Disbelief from Colleagues Regarding Pain

For women experiencing endometriosis, severe pain, fatigue, and heavy menstrual bleeding can render it nearly impossible to maintain a professional career or social life. The sole method for formally diagnosing endometriosis involves invasive surgery, yet reaching this diagnostic stage can typically take between eight and ten years from a patient’s initial general practitioner consultation. For individuals like Dee Montague-Coast, 41, the absence of visible disease during this extended diagnostic period can lead to others doubting their illness, sometimes compelling them to change professions. Cardiff academics have now developed an evidence-based “symptom reporting tool” designed to highlight patterns that will alert healthcare providers. Dee, from Newport, received her endometriosis diagnosis in 2018, after experiencing symptoms for 23 years. She resigned from a marketing role after former colleagues questioned whether her symptoms were fabricated to secure additional time off. “When it’s gynae [gynaecology] related, there’s common assumptions that this is something all women and people assigned female at birth go through and that we should get on with it,” she said. “I’ve had people think that I’m attention-seeking, that I’m making things up, that I’m just maybe a bit weak or a bit pathetic.” Her need for time away from work to manage chronic pain resulted in Dee having to attend an attendance hearing. “I felt that I was treated in the same way as somebody who was perfectly healthy,” she said. Dee was also diagnosed with adenomyosis – a condition where the lining of the womb begins to grow into the muscle in the wall of the womb – but underwent a hysterectomy in 2020 to treat it. She stated that this diagnostic delay contributed to further health issues, including myalgic encephalomyelitis or ME, also known as chronic fatigue syndrome, and fibromyalgia. Endometriosis is a gynaecological condition linked to menstruation, characterized by tissue similar to the lining of the womb being found in other bodily areas, such as the fallopian tubes, pelvis, bowel, vagina, and intestines. In rare instances, it has even been discovered in the lungs, eyes, spine, and brain. Symptoms include severe to debilitating pain, often in the pelvic region, fatigue, and heavy periods; the condition is also associated with infertility. There is currently no cure for endometriosis, and its cause remains unknown. A collaborative effort between academics and healthcare professionals in Cardiff has now produced a symptom reporting tool for Endometriosis Cymru. Dr Robyn Jackowich, a lecturer in psychology at Cardiff University, who spearheaded the tool’s development, explained that it can be used to “track five key symptoms of endometriosis daily, where a patient will rate the level of pain intensity of each symptom and the impact that it is having on their life.” She added, “We recommend doing that for about two months.” “From there, you can generate a brief report that summarises the information and graphs your symptoms, so you can share it with your healthcare provider or employer.” Dr Jackowich mentioned that the tool could also benefit women like Dee who have already received a diagnosis but wish to continue monitoring their symptoms over time. “Perhaps something has changed, or they’ve started a new treatment,” she said. Since surgery can only remove or destroy some endometriosis tissue, women often manage symptoms until they improve after menopause. In November, Dee provided testimony at the Senedd’s Disability and Employment Inquiry, which aimed to assess further measures to reduce and eliminate employment barriers faced by disabled individuals. “When we started exploring reasonable adjustments, I didn’t understand that I was disabled under the Equality Act, or know I was allowed to call myself disabled,” Dee stated. “We have such a narrow view of what disability is, and what it looks like.” The Welsh government formally adopted a Social Model of Disability in 2002, but Dee noted there were “still too many employers who don’t know about it.” While endometriosis, as a chronic condition, does not automatically qualify as a disability under equality law, an individual living with endometriosis can be considered disabled by their condition, a fact accepted by the law. Endometriosis symptoms that worsen over time as a “progressive condition” are also covered by the Equality Act 2010. Karen Hiu Ching Lo, vice-chair of Fair Treatment for the Women of Wales (FTWW), also has endometriosis and frequently missed lectures as a medical student in Cardiff due to multiple debilitating symptoms. She indicated that symptoms such as intense pain, bowel and bladder issues, and low mood often lead to confusion at the point of referral, ultimately delaying diagnosis. “What we’re trying to do is make people realise that this could be all one condition, and that all you needed was that one referral to the right person.” “When we speak to medical health professionals a lot of our experiences could feel invalidated. We want this tool to be able to empower patients, and also be able to guide GPs.” Dee now collaborates with FTWW, utilizing her experience to support members who use the tool. She suggested that if the tool had been available at the time of her diagnosis, it could have prevented over two decades of agony. “It would have accelerated my diagnosis and treatment,” Dee said. “I didn’t necessarily have classic endometriosis symptoms, and that is very, very challenging to explain to an employer.” The Cardiff and Vale University Health Board stated: “We are aware of the impact delays in diagnostics for women’s health conditions can have on patients and as part of the joint endometriosis action plan we are committed to supporting patients to access evidence-based support in a timely manner.” The Welsh government commented: “The symptom reporting tool enables women to track their symptoms and communicate easily with professionals, thereby improving experiences for both patients and healthcare professionals.” Copyright 2024 BBC. All rights reserved. The BBC bears no responsibility for the content of external websites. Information regarding our external linking policy is available.