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By Alice Gibbs
Senior Reporter
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Aged 17, Saffron Devereux McCarthy started to worry. Unlike her friends, she hadn't begun her period.
At first, she thought it might have something to do with the fact she had been born with a single kidney, positioned unusually in her pelvic region. "My biggest concern was that my kidney was messing with my hormones or organs," she told Newsweek.
Over the next two years, she found herself between specialists and on waiting lists. In early 2024 she was referred to a kidney specialist, only to be told her reproductive concerns were likely unrelated.
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I broke down in tears.
Saffron Devereux McCarthy
Further tests were arranged and passed her on to endocrinologists, who ordered bloodwork and an ultrasound. In June 2025, McCarthy finally had the scan she hoped would offer answers, and the results left her stunned.
During the ultrasound, doctors said they couldn't find her uterus—a revelation that left her confused and anxious. She spent weeks waiting for clarification. Repeated phone calls and emails brought no reassurance.
When she finally returned for a follow-up appointment at St. James's Hospital in Dublin in late October, she was given life-changing news: she had been born without a uterus. "I broke down in tears and so did my mom," McCarthy said.
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What is Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome?
The condition, known as Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome, is a rare congenital disorder that affects about one in every 4,500 to 5,000 female births. Patients develop breasts and pubic hair in adolescence, but because the uterus and cervix fail to form, they do not begin menstruating.
McCarthy broke down in tears as the doctor delivered the diagnosis, but says she was met with platitudes rather than compassion. "She just said things like, 'It's not the end of the world' and 'other women experience this too,' which didn't reassure me at all," she said. "I walked out of that appointment feeling frustrated and hopeless."
The diagnosis can be profoundly distressing for young women.
Dr. Hadi Ramadan
She has since been referred to specialists, but she expects the wait will be long. In the meantime, she has been left largely to piece together information about her condition online.
A spokesperson for St. James's Hospital told Newsweek: "St James's Hospital cannot comment on individual cases, however, a member of a patient's clinical team would be happy to discuss any aspect of their care directly with them. It is also possible for patients to provide feedback on their experience via the hospital's Patient Experience Office."
"The diagnosis can be profoundly distressing for young women and their families," Dr. Hadi Ramadan, reproductive endocrinologist at Boston IVF, told Newsweek.
While patients with MRKH typically have normal ovarian function, the absence of a functional uterus limits their ability to carry a pregnancy. Up to 40 percent will also have kidney anomalies, and others may also have skeletal or hearing problems.
"The combination of infertility, absence of menstruation, and potential need for surgical interventions often requires multidisciplinary care, including counseling and psychosocial support," Ramadan said.
Although there is no cure, there are treatment pathways. Vaginal dilation therapy, sometimes followed by surgery, can allow patients to have normal reproductive function.
Because ovarian function is usually intact, many patients can still have genetic children through IVF and surrogacy. Uterus transplants remain experimental but have shown promise in some cases.
For McCarthy, the brief, clinical delivery of the diagnosis has left her reeling. "Honestly, I don't think it's fully sunk in yet," she said.
Do you have a tip on a health story that Newsweek should be covering? Do you have a question about MRKH? Let us know via health@newsweek.com.
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