Adenomyosis Affects One In 10 Women But Nobody Has Heard Of It
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Adenomyosis: it's a condition you've probably never heard of, but what if we told you that one in ten women suffer from it? Think of it as one friend in your girl group, one female colleague in your office, or one lady in your yoga class.
Despite it affecting the same amount of women as endometriosis (which has benefited from recent awareness campaigns and celebrity sufferers) adenomyosis is barely heard of. It doesn't even have its own NHS page, despite affecting the lives of countless women every day.
Adenomyosis (pronounced 'ad-no-my-osis') is a condition where the cells of the lining of the womb are instead found in the muscle wall of the womb (not to be confused with endometriosis, where the endometrial cells form outside the uterus).
It shares many symptoms with polycystic ovary syndrome (PCOS) and endometriosis, such as heavy, painful or irregular periods, pre-menstrual pelvic pain, pain during sex, and bowel movement-related pain.
While adenomyosis - often nicknamed adeno by sufferers - is most common in women age 40 to 50 or women who have had children, it can occur in any woman that has a period.
For Rosy Murch, 25, the symptoms, including crippling period pain, bloating, migraines and IBS symptoms, started when she was just 13 years old.
The London-based film producer told Pretty 52 that she was diagnosed with adenomyosis in September 2018 following several years of misdiagnoses and misunderstood symptoms.
"I first noticed 'abnormal' symptoms a year before my diagnosis, when I suffered from repeated bladder problems and severe kidney infections, for which I was hospitalised," she explains.
Rosy says that the condition not only affects her during her period, but in the days leading up to it, and after. In addition, she feel symptoms leading up to ovulation, ovulation itself, and for a week after. This leaves her with "about five days during the month where I am unaware of any pain or symptoms".
Due to her adenomyosis, there are times when Rosy cannot "physically get to work," and social events "become a daunting hurdle or may need to be cancelled on the day."
"It can feel like you have no control over your own body - you are totally subject to its unpredictability," says Rosy.
While Rosy is lucky enough to have a supportive partner, she explains that the irregularity of periods caused by the condition can have a detrimental impact on the working lives, social lives and love lives of sufferers.
"There have been instances where I am mid-cycle and bled through the bed sheets unexpectedly," she explains. "I can absolutely say there are no secrets in my relationship anymore."
Admitting that even she had not hear of adenomyosis before she was diagnosed, Rosy puts the lack of knowledge around the condition down to only recent advancements in diagnosis technology and the "stigma" around discussing periods.
She says: "No one knows if their period pain is normal or not, few want to openly discuss it beyond the realm of their closest confidantes, and very few would dare to discuss it in the workplace."
Adenomyosis is not life threatening and in most cases, sufferers can live with adeno with the right medication. The one cure is getting the womb removed (hysterectomy), but most women choose to maintain fertility and live with the condition.
Rosy says: "With any luck, increasing methods of diagnosis and increasing diagnoses should mean that increasing medical research is conducted into this condition so that 'adenomyosis' becomes a word that people can at least know how to pronounce when someone mentions it."
For more information on adenomyosis, you can visit Wed MD or consult your doctor.