Endometriosis diagnosis delays described as ‘soul-destroying’

Vicky Tutty characterizes her endometriosis symptoms by stating, “It’s like someone is taking a machete to the front of your pelvis, and a baseball bat to your lower back.” This 42-year-old, residing in Hartley Wintney, Hampshire, spent 15 years seeking a diagnosis. By the time she received it, her condition “was so bad and so complicated that the consultant couldn’t actually do anything”. While Vicky awaits surgery, specialists are cautioning about a gynaecology care crisis across the UK. Waiting lists for appointments in this field have more than doubled since February 2020. Endometriosis is defined as a condition in which tissue resembling the womb’s lining develops outside the womb. Its potential effects include intense period pain, discomfort in the pelvic region, and profound fatigue. For Vicky, who originates from Reading, the condition has a “huge impact,” impairing her mobility and depleting her energy to the extent that she has little left for other activities at home following a day’s work. She elaborates, stating, “It’s just constant.” She adds, “I wake up every morning [thinking] ‘what kind of a day is it going to be today?’, and sometimes I can’t get out of bed.” Vicky is married and is a mother to two children, a 17-year-old son and a 13-year-old daughter. When family members inquire about her well-being, she employs a specific code or “in-joke.” She explains, “When I say ‘I’m fine’, I’m in pain.” She continues, “And when I say ‘I’m in pain’, I’m really in a lot of pain.” She further states: “There were lots of visits to the GP. I went to the consultant with my dad because he was so tired of seeing me in pain… so clearly I needed some support in advocating for myself.” Vicky received her diagnosis in January 2022. Four months subsequent to this, the specialist informed her that she would be placed on the waiting list for a hysterectomy. She recounts: “I asked ‘How long do I have to wait? I appreciate that’s like asking how long is a piece of string’.” He responded: “It’s a very long piece of string.'” Vicky received the notification two years subsequent to this. Having recently commenced a new job, the procedure needed to be postponed until November. Subsequently, her Body Mass Index (BMI) was determined to be excessively high, leading to its current rescheduling for January. She remarks: “It’s been a very long wait to get this operation.” She adds, “It’s a bit soul-destroying. It feels like women’s health is just ignored.” Dr. Shilpa McQuillan, who is the founder and clinical lead of the Berkshire Menopause Clinic and the recently appointed clinical lead of Gynaecology Berkshire West, states that narratives similar to Vicky’s are “extremely common.” She comments, “I imagine there are millions that actually relate to this.” She explains, “Every week or month you’re waiting, that condition can get more complex, so by the time you reach the hospital, you’re not only needing a gynaecologist to see you, you are needing really complex help.” She indicates that healthcare professionals “are really feeling out of control and unable to help women,” with a prevailing view that insufficient resources or funding are available. Within England, the NHS aims for 92% of patients to experience a referral-to-treatment duration of under 18 weeks. A spokesperson from the Department of Health and Social Care commented: “Too many women are facing unacceptable waits for gynaecology treatment.” They further stated that the current government is “overhauling” women’s healthcare, a move “backed by a £22.6bn increase in day-to-day health spending,” which is intended to “bring down waits in gynaecology so get women the support they need when they need it.” For updates, BBC Berkshire can be followed on Facebook, X (formerly Twitter), or Instagram. Copyright 2024 BBC. All rights reserved. The BBC bears no responsibility for the content found on external websites. Information regarding our policy on external linking is available.