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Adenomyosis is a painful condition that impacts even more women than endometriosis, but experts say there is still "an appalling lack" of knowledge and awareness of the disease in Australia.
It impacts an estimated one-in-five to one-in-three Australian women, according to government health resources, while endometriosis affects about one-in-nine women.
And the symptoms of severe cases of adenomyosis often tend to be even worse than endometriosis – causing heavy bleeding as well as severe period pain – and treatment paths are not as widely known as those for its "cousin".
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Before she had treatment, the pain Hannah Singh suffered due to adenomyosis was so bad she sought help from hospital emergency departments multiple times.
"It was so horrible that I can't explain it," she told 9news.com.au.
"I would be in so much pain that I would faint."
The 46-year-old said she took so many painkillers they caused issues in the lining of her stomach, while her bleeding was so heavy that she was too embarrassed to risk being in public.
The Sydney woman suffered from these severe symptoms for years before she finally got a diagnosis, and when she did, she said no one she told knew what her condition was.
Singh's story is far from unique.
Sydney interventional radiologist Eisen Liang, who has been specialising in treating the condition for 15 years, is adamant that "now is the time to speak about adenomyosis".
He is passionate more needs to be done to combat "the huge lack of awareness about the disease" – among healthcare providers as well as the general public.
"It's a very underdiagnosed and mismanaged condition," he said.
Liang said he regularly sees women who have failed to previously have their adenomyosis diagnosed despite up to 15 years of seeking medical help for their symptoms.
What is adenomyosis?
Liang explained "it's known as the bad cousin of endometriosis", because the diseases have very similar factors.
In women with endometriosis, cells similar to those that line the uterus have grown outside of the uterus, usually in other parts of the pelvis.
In women with adenomyosis, the endometrial tissue has grown in the wall of the uterus itself, causing inflammation, cysts and scars.
It's believed many women who have endometriosis also have adenomyosis.
A German study of 143 women with these symptoms found more than four in five women had both adenomyosis and endometriosis.
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What are the symptoms of adenomyosis?
The main symptoms are severe period pain and heavy menstrual bleeding.
Symptoms can also include premenstrual bloating and pain, and pain during sex.
Why is adenomyosis difficult to diagnose?
Adenomyosis symptoms are similar to several other health conditions, meaning it is hard to pinpoint.
The disease can be missed by a pelvic ultrasound but can be confirmed by an MRI or keyhole surgery called laparoscopy, which can set those suffering back financially – and by a substantial amount.
Liang said this is a barrier to getting diagnosed, as MRIs alone, which are the preferred and less invasive method, are not funded by Medicare and can cost around $400.
How is adenomyosis treated?
Treatments offered for adenomyosis vary depending on the healthcare provider.
Many women are advised to try anti-inflammatory drugs to relieve the pain, while hormone medications, such as contraceptive methods, are also recommended to reduce pain and bleeding.
In some severe cases, hysterectomies – the surgical removal of the woman's uterus – have been discussed.
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There is also a non-surgical interventional treatment – uterine artery embolisation (UAE) – which some patients have found reduces their symptoms.
Liang regularly performs these treatments on women with adenomyosis and advocates UAE to women as an alternative to a hysterectomy because it is not a major surgery.
The treatment is an interventional radiology procedure that cuts off the blood supply to the artery to the uterus.
However, it is more expensive and is not covered by Medicare.
It also does not tend to solve adenomyosis but can reduce the symptoms.
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