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Grace reached out to BBC Your Voice out of frustration, feeling that medical professionals often overlook the possibility that teenagers and adolescents can be affected by endometriosis. Her journey toward diagnosis was challenging; neither her general practitioner nor the first private consultant she consulted identified her condition. Grace recalls, “Even a specialist didn’t believe me. And if a specialist won’t listen to me, who will?” It was only after her family insisted on a second private opinion that she finally received a positive diagnosis.
Endometriosis is a condition where tissue similar to the lining inside the womb grows outside it, causing severe symptoms like pelvic pain, heavy menstrual bleeding, and extreme tiredness. According to NHS data, approximately 10% of women experience this issue. Contrary to common beliefs, the charity Endometriosis UK explains that the condition can develop at any age after menstruation starts, not just in older women. The charity’s spokesperson, Faye Farthing, emphasizes the need for better menstrual health education among young people, stating that this is vital to “ensure the next generation are not robbed of the future they deserve.”
Diagnosing endometriosis can be a lengthy process, often taking an average of nine years in adult women. For teenagers, early diagnosis can be even harder as symptoms may not show up on ultrasound scans. However, advancements are being made with new tests in development that could allow for earlier detection. Grace, who began experiencing symptoms at 13, has also been warned about potential fertility challenges caused by the condition. She says, “I have to have kids within the next 15 years, otherwise I might not be able to,” reflecting the pressure she feels after being told that damage to her reproductive organs might limit her chances of having children beyond the age of 30.
Dr Gail Busby, a paediatric gynaecologist, explains that while nearly 80% of adolescents experience painful periods, it is important for clinicians to recognize when symptoms are abnormal. She highlights signs such as missing school, avoiding physical education, or withdrawing from social activities. Dr Busby says, “When you’re in bed and your best friend is a hot water bottle – that’s not normal.” Grace’s experience of symptoms starting at 13 fits the typical range that Dr Busby encounters in her clinic, where she treats girls both younger and older. In addition to her NHS role, Dr Busby has set up a private adolescent endometriosis clinic in Manchester.
The effects of endometriosis extend beyond physical pain. Young women like Grace are more prone to anxiety and depression, as the condition disrupts a crucial period for learning, emotional growth, and socializing. Dr Busby remarks, “We should enjoy adolescence, but they can’t do what they enjoy doing, what their peers are enjoying doing.” Grace’s family history of endometriosis, as noted by her mother Samantha, did not make getting a diagnosis any smoother. Samantha recalls the frustration of hearing advice such as, “Oh we’ll just put you on the pill for six months and see how we go,” even when Grace was in severe pain.
Grace recently underwent a laparoscopy, a minimally invasive surgery aimed at removing endometriosis tissue, hoping that it will offer some relief, even if temporary. Following the procedure, she has been advised to use hormonal contraceptives to slow the growth of tissue and reduce pain. By sharing her story, Grace wants other teenagers to feel empowered to seek diagnosis and help. She reflects, “I felt I was going crazy. That it was all in my head. But actually, you know your body best and your pain is real.
Read the full article from The BBC here: Read More
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