Her diagnosis marked the beginning of a five-year journey through countless scans, blood tests, and MRIs
Ashley Reilly, a 21-year-old woman from Western Australia, has shared her extraordinary journey of experiencing a rare medical phenomenon where she ‘grew a uterus’ despite never experiencing puberty, the New York Post reported. Her story began in primary school, where she watched her friends embark on the journey of adolescence, marked by menstruation and physical changes. However, she never experienced the same physical changes, leaving her feeling confused and isolated. It wasn’t until Ashley was 16 that she shared her struggles with her mother and aunt, who took her to a doctor.
”For me, it just never happened. I didn’t speak up about it, because I wasn’t sure if it was normal or if I was a late bloomer,” she told news.com.au.
The ultrasound revealed that Ashley’s reproductive anatomy was significantly underdeveloped. She had no uterus, no cervix, and a shortened vaginal canal. This led to a diagnosis of Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome, a rare congenital condition characterised by the underdevelopment or absence of the vagina and uterus, despite normal external genitalia.
Her diagnosis marked the beginning of a five-year journey through countless specialist appointments, scans, blood tests, and MRIs. She was also given medication for the hormone oestrogen.
”The last scan I had was an internal ultrasound and they were like, ‘There’s your uterus’. I was like, ‘Excuse me’. I was shocked. I didn’t know what to say, especially after all these years of thinking there’s nothing there. I still can’t get over it,” she said.
Doctors told her if her uterus continues to grow, conception might be possible, although IVF would likely be necessary due to her ovaries’ limited activity. They have also advised her to change her medication, which should trigger her first period in the coming months.
Since childhood, Ashley had always envisioned herself becoming a mother someday, so learning about her reproductive challenges at 16 was tough to navigate.
Ashley’s initial MRKH diagnosis was later deemed inaccurate, leading to a re-evaluation and a new understanding of her condition. She learnt that she has hypogonadotropic hypogonadism, or ‘hypo hypo,’ a condition where the pituitary gland fails to stimulate the ovaries to produce essential sex hormones.
Ashley is now sharing her story on TikTok and hopes that she can help others feel less alone and more confident in seeking support.
