"Endometriosis spreads like my cancer; why am I being forced to wait so long?"

Endometriosis patient Lara Stevens of Cardiff wants her condition treated more urgently – like cancer she experienced as a child, endometriosis can spread and damage multiple organs if untreated in time – yet, unfortunately, treatment efforts often do not reflect its significance and urgency. Rarely, cancer has even been detected in lungs, eyes, spine and brain tissue. “Once thought to be unique to women only,” endometriosis was later confirmed in 2020 to also affect men. Symptoms typically include debilitating pelvic area pain, fatigue and heavy periods – leading to infertility issues as a result of endometriosis. Lara Stevens recounts: “I hate thinking what could have happened had I waited.” After four years of trying and miscarriages as well as extra waits for fertility support services she decided to use her health insurance and undergo surgery privately instead. “I was saddened that endometriosis wasn’t seen as a priority; when I did have surgery I was riddled with endometriosis”, she noted. “It had settled itself all around my bladder, my bowel, as well as in both of my ovaries – who knows if had I waited what might have become apparent? “A university lecturer from Cardiff said she was led to believe at that time there would be four or five year waits before surgery could take place. “I was only in my early 30s at that time and didn’t want to spend the remainder of my 30s trying, thinking about organ damage caused by endometriosis and still struggling. No woman knows when their periods will cease so you’re left stuck between a rock and hard place when trying to become pregnant again. “Lara fell pregnant shortly after surgery to treat endometriosis, and is currently expecting her second. However, an endometriosis lesion still remained and further surgery might be required in future. At present she’s under the care of NHS gynaecology services where routine appointments may take longer than initially estimated; there are over 50,000 women waiting in Wales alone who need hospital gynaecological services with half waiting more than the target 26-week duration; 31% waiting longer than 36-week duration for hospital hospital services than needed gynaecological services! “I understand why cancer is important, but what I am proposing here is to view mental illness with equal priority, since its progression may be unpredictable and should be closely monitored. “Fighting to access assistance can make life more challenging. “Recent NHS performance figures reveal four other specialties with waiting lists longer than gynaecology. However, taking only those eligible for gynaecology into account, per head of population gynae services have long waitlists that rival or surpass those found elsewhere in Wales – worse even than England or Scotland. Geeta Kumar from the Royal College of Obstetricians and Gynecology as well as leading women’s services in north Wales expressed that increasing waiting lists may have various sources of cause. “Women have become more aware of conditions – which is good – however women’s health has been de-prioritized for far too long,” according to Geeta Kumar from Covid. During Covid one of the fastest cancelled lists was for treatment related to Gynaecology. Since Covid there has been an effort made to switch terminology for conditions like pelvic pain, prolapse or endometriosis from being described as benign (benign gynaecological conditions) towards non cancerous ones (non cancerous). “Gynaecology often gets de-prioritised when elective planned lists are set”, noted Kumar, while many patients perceive benign as not urgent and therefore its treatment as less urgent or trivialized than other surgical specialities. Patients also view benign as downplaying debilitating symptoms which Dr Kumar described as being extremely debilitating. Women have reported both physical harm, as well as their mental wellbeing being negatively impacted; many cannot leave home due to pain or bleeding related conditions they’re dealing with. “MS Delyth Jewell noted many women feel pain is normalised and their symptoms taken less seriously; she said this exacerbated delays to seeing specialists when many believed their symptoms had been discounted and struggled for referral.” Women too often do not believe when it comes to pain; many endure chronic discomfort for years while being shrugged off as suffering anxiety or convinced it must all be in their head. “In July 2022, Wales published a quality statement on women’s health that acknowledged significant disparities between care for men and women. Goals were established for publishing a 10-year women’s health plan this year – similar plans had already been unveiled by England in 2021 and Scotland the previous year; Ms Jewell expressed her discontent that Wales was taking so long in responding. Liz Williams believes there are widespread societal attitudes which view women’s discomfort as inevitable, according to Vice-chair of Fair Treatment for the Women of Wales, Liz Williams. Some members had felt forced to quit their jobs or had relationships break apart due to symptoms; or had fallen into debt as they felt forced into paying private care providers outright for treatment. She added: “We do not believe women can access services equitably – they are being let down.”