Emily Griffiths, 26 and childless, desires a hysterectomy, an operation to remove her womb. She acknowledges the significance of this decision, but states that endometriosis and adenomyosis have confined her to her home, causing severe pain and making her unable to envision motherhood. Her current aspiration is to walk without assistance. However, she reports difficulty finding a medical professional willing to discuss the procedure due to her age. Emily, who resides in Carmarthenshire, stated, “Doctors are too busy planning ahead for the child I might want in the future and can’t see where I am right now.” Emily’s symptoms began at age 12, characterized by periods so painful and heavy that they led to school absences and anaemia. She recalled that general practitioners informed her the pain was normal. She further stated, “They would say it was all in my head and I was just trying to be off school.” At 21, Emily received an endometriosis diagnosis following a collapse due to sepsis. Although referred to a specialist center in Cardiff, she indicated that the extensive waiting period compelled her family to pay for private surgery. Emily, who has not been able to consult an NHS specialist, mentioned she had seen numerous private clinicians and perceived “zero support” from the health service. A hysterectomy would result in Emily’s infertility and induce menopause, potentially elevating her risk of osteoporosis, heart disease, and dementia. Despite this, for the last three years, she has been receiving monthly injections to chemically induce menopause, halting her periods in an attempt to lessen her symptoms. Scans have revealed that this treatment has led to a decline in her bone density. She stated, “A hysterectomy isn’t a cure for endometriosis, but it is for adenomyosis,” noting that she was 23 when she received the latter diagnosis. She added, “Even though it’s a big step, I could have the possibility of maybe going for a little walk when I’m really struggling… but at the moment I’m stuck in a very dark place.” A hysterectomy is a significant surgical procedure requiring a lengthy recovery period, typically considered only after less invasive treatments have been exhausted. Its purpose is to address health conditions impacting the female reproductive system. A total hysterectomy involves the surgical removal of the womb and cervix. In certain instances, the fallopian tubes, ovaries, lymph glands, and a section of the vagina may also be excised. Adenomyosis is a medical condition characterized by the endometrial lining of the womb growing into its muscular wall. Symptoms can include painful and heavy periods, pelvic pain, bloating, and dyspareunia (pain during sex). Endometriosis occurs when tissue resembling the womb’s lining develops outside the uterus in other areas of the body. Symptoms arise when these growths break down and bleed, but the blood cannot exit the body. Emily’s endometriosis is currently extensive, affecting both her ovaries, her uterus, bladder, and a section of her bowel. She has also experienced severe menopausal symptoms; however, hormone replacement therapy (HRT) exacerbates her endometriosis. Due to the intricate nature of her condition, Emily would require an endometriosis specialist to perform the hysterectomy, as the procedure would also entail the excision of endometriosis. NICE lists hysterectomy among several treatment options for both endometriosis and adenomyosis. Endometriosis UK stated that while a hysterectomy does not assure complete relief from pain and symptoms, “it’s important to remember that the final choice is yours – it is your body.” Emily indicated that this perspective conflicted with her personal experience. She asserted, “I don’t really think that women do have the freedom to make a choice over their own bodies.” She added, “I’ve been told that if I settle down ‘you may want to have a child with your husband’ – it’s just planning ahead and not seeing where I am right now.” Emily concluded, “Basically fertility has been put way above any of my illnesses and what I’m going through.” Emily reported being advised to continue with chemically induced menopause, use the contraceptive pill or anti-depressants, and engage in activities such as “running, pilates or yoga.” She commented, “I can’t walk without support, so to tell me about pilates or running is not the nicest comment.” Emily’s efforts to raise awareness about her challenges have been acknowledged by the King and the Princess of Wales. She remarked, “I’ve had some really amazing opportunities… and that’s what’s keeping me holding on to some sort of hope.” Wales currently has two accredited NHS endometriosis centers, located in Swansea and Cardiff. The Swansea center presently does not admit patients from beyond its health board’s jurisdiction, whereas the Cardiff center stated it evaluates external referrals “where appropriate.” While every health board employs endometriosis nurses to assist patients, Emily, residing in the Hywel Dda health board region, indicated that prolonged waiting times left her with few alternatives other than pursuing private medical care. Emily stated, “There’s been two privately funded surgeries so far, with possibly another one coming.” Post-operative care and medical advice also incur expenses. She explained, “No one on the NHS will monitor me currently, so it does become a never ending cycle of funding and finding the right person.” She added, “If you have a question, maybe a certain medication they’ve prescribed isn’t agreeing with me, it always comes at a cost, you can’t simply ring them and find out.” Emily concluded, “I understand that’s the route you take when you have private care, but if the NHS aren’t there to help either, then there’s no choice.” Sioned Williams, Plaid Cymru’s spokesperson for social justice and equalities, became aware of Emily’s situation after Emily brought it to the attention of her local Member of the Senedd (MS). Ms Williams commented, “The Welsh government has been too slow in delivering their women’s health plan.” She further stated, “People with endometriosis such as Emily just want to be heard and believed and this should not be too much to ask.” Sam Rowlands, the Welsh Conservative health spokesperson, remarked: “The Welsh Conservatives would immediately scrap the restrictive NHS guidance that locks patients in their local area, blocking cross-community and cross-border working, to make use of extra capacity to reduce excessive NHS waits in the short term and look to enact a substantial workforce plan to tackle the more deep-seated issues in the longer term.” A spokesperson for the Welsh government affirmed that women’s health has been designated “a key priority” and announced the publication of a 10-year women’s health plan in December. They added, “The Women’s Health Network, led by the first ever clinical lead for women’s health in Wales, has been established to deliver improvements including in endometriosis care, treatment and support.” The spokesperson further stated, “Health boards are responsible for delivering services and we have funded dedicated endometriosis nurses within each health board.”

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