I have a friend who has a well-documented case of severe endometriosis. It was diagnosed when she was in her teens. By age 30 she'd already had two operations to clear it. At age 31, she took a follow-up call after one of her regular check ups. It was during this call that she was told – ever so casually – that "by the way you also have adenomyosis". A wholly separate condition; one that she'd never heard about before. It had been completely missed, even after countless appointments and multiple surgeries. Her story is certainly not an isolated one.

Adenomyosis is a unique condition that is only just gaining awareness – yet conservative estimates say one in five women has the condition. Put simply, it causes endometrial tissue to grow into the muscular wall of the uterus. The result is an inflamed uterus that in some cases is up to two or three times the ‘normal’ size; causing pain and impacting fertility. Despite the relative lack of awareness of this condition, it's estimated that 30-40 per cent of people with endometriosis also have adenomyosis. But if this condition is so common, why is it so unknown? And why does it take so long for some to receive their diagnosis?

"Like endometriosis, it can be a bit tricky to diagnose," said Dr Devini Ameratunga, Fertility Specialist and Medical Director of Life Fertility Clinic in Brisbane. "Many women with adenomyosis will have no noticeable symptoms."

Since adenomyosis involves tissue inside the uterus – compared with endometriosis, which involves growth on top of the organs – it adds an extra layer of complexity. "Adenomyosis is not easily diagnosed at surgery," said Dr Dev. "It would not necessarily be visible during a laparoscopy for endometriosis."

"We’re increasingly advocating for ourselves and are unwilling to accept pain as a normal part of being a woman."

In fact, historically, adenomyosis was only detectable on hysterectomy. But technology is improving and women's advocacy is driving awareness. Women's pain has been ignored for centuries and we're no longer willing to accept this form of medical misogyny.

"We’re increasingly advocating for ourselves and are unwilling to accept pain as a normal part of being a woman," says Dr Dev. "Knowledge is power. Know your cycle, and if something feels off, don’t be afraid to speak up."

Below, Dr Dev shares her answers to some of the most frequently asked questions about adenomyosis. This is what you need to know about adenomyosis; why its underdiagnosed, who it affects and what to do if you you suspect you have the "sister" condition to endometriosis.

For those unfamiliar with it, what exactly is adenomyosis?

Adenomyosis is a condition that causes endometrial tissue of the uterus, the tissue that sheds during menstruation, to grow into the myometrial (muscular) wall of the uterus. It causes inflammation and can lead to an enlarged uterus, in some cases up to 2 or 3 times the ‘normal’ size.

Why is adenomyosis considered the “sister” condition to endometriosis? How does it differ?

They are similar, yet distinct diseases that involve the growth of excess endometrial tissue. In adeno, this tissue grows into the uterine muscle, whereas in endo, lesions form outside of the uterus, on organs such as the ovaries or bowel. The conditions have overlapping symptoms, and they will often co-exist – hence the ‘sister’ or ‘twin’ title. Around 30-40 per cent of women who have endometriosis will also have adenomyosis, and vice versa.

What are the most common symptoms of adenomyosis? Could someone have an asymptomatic variety?

Many women with adenomyosis will have no noticeable symptoms, and it may first be discovered during investigations for fertility. For symptomatic cases, common complaints are very heavy bleeding (menorrhagia), clotting, bloating, painful intercourse and chronic pelvic pain. When the uterus is significantly enlarged, there may also be bladder and bowel symptoms, such as constipation.

Why do you think adenomyosis has historically been underdiagnosed or misunderstood?

Like endometriosis, it can be a bit tricky to diagnose.

Nearly a third of those with the condition are asymptomatic, which no doubt contributes to underdiagnosis. The fact that adenomyosis symptoms often overlap with other conditions, and it often co-occurs with fibroids or endometriosis, also makes things more complicated to unravel. Additionally, diagnosis requires a transvaginal ultrasound, which may be confronting and avoided by some due to cultural or religious reasons.

Adenomyosis is not easily diagnosed at surgery. For instance, it would not necessarily be visible during a laparoscopy for endometriosis, and it wasn’t always picked up in investigations in the past. With better accuracy in imaging (ultrasound, for instance), it is diagnosed more easily and frequently.

"Women’s pain has a history of being dismissed."

While women’s pain has a history of being dismissed, and the condition certainly has less awareness than endometriosis, things are changing. We’re increasingly advocating for ourselves and are unwilling to accept pain as a normal part of being a woman. Education around the condition and diagnostics have also improved.

If someone believes they might have it, what is the pathway to diagnosis? How reliable is current imaging?

Previously, adenomyosis could only be confirmed via hysterectomy, but screening is now very good. We now use transvaginal ultrasound and, in some cases, MRI to diagnose adenomyosis – looking for markers like asymmetrical myometrial thickening, cysts or a ‘boggy’ – don’t you love that term? – or bulky uterus.

If you believe you may have adenomyosis or have any symptoms like pain or heavy or prolonged bleeding or substantial clotting, speak to your GP. They will be able to send you for screening and refer you to a gynaecologist for further investigation and treatment.

How does it potentially impact fertility? Can it increase the risk of miscarriage or failed IVF cycles?

Adeno is associated with infertility and implantation failure; however, many women will still be able to conceive and birth a baby, whether naturally or with the help of IVF. The main concern is that the inflammatory environment impacts embryo implantation. It is important to see a specialist who can prescribe evidence-based treatment to optimise fertility.

What treatments are available? Can adenomyosis be “cured,” or is it about long-term management?

As it’s an oestrogen-driven condition, the symptoms of adenomyosis will often resolve with menopause, after typically worsening during perimenopause. It is much more difficult to remove the tissue via surgery than in endometriosis, and, unfortunately, the only true ‘cure’ is hysterectomy. Which is obviously not a suitable option for women wanting children.

"It is much more difficult to remove the tissue via surgery than in endometriosis, and, unfortunately, the only true ‘cure’ is hysterectomy."

Treatment will revolve around managing pain, e.g. with anti-inflammatories, and reducing heavy bleeding. First-line treatments aim to reduce the oestrogen load that increases growth of the ectopic-like tissue, such as a progesterone-releasing IUD like the Mirena or a combined or progesterone-only contraceptive pill.

Hormone-blocking agents (GnRH agonists) can also be very effective for reducing the uterus size by blocking oestrogen production (which fuels adenomyosis). For severe cases, uterine artery embolisation (which blocks some of the blood flow to the uterus) or an endometrial ablation can be performed to reduce heavy bleeding – but only if future fertility isn’t an issue.

As with all inflammatory conditions, lifestyle changes such as exercise, managing stress and a Mediterranean-style diet may be beneficial.

What are the key red flags patients should never ignore?

Pain and heavy bleeding that impacts your ability to function, chronic pain that occurs outside of your period, large clots, irregular periods, bleeding between periods, and any sudden changes to your cycle.

What advice would you give someone newly diagnosed with adenomyosis?

Don’t panic. There are some great treatments available to help manage your symptoms and, if babies are still on the agenda, options and support available.

"Know your cycle, and if something feels off, don’t be afraid to speak up."

Knowledge is power. Know your cycle, and if something feels off, don’t be afraid to speak up. You do not need to put up with pain or debilitating periods, and the earlier we investigate issues like adeno, endo and PCOS, the better the fertility outcomes.

Feature image: from the Soul issue.