“I screamed in pain non-stop for 45 minutes”

“The pain was so terrible that I couldn’t move, turn around or sit down. I screamed nonstop for 45 minutes,” BBC presenter Naga Munchetty said earlier this week, as she described how she suffered from adenomyosis, a debilitating disease of the uterus.

“Constant, throbbing pain. In my womb. Around my pond. Sometimes it runs down my thighs. And I will have some level of pain throughout the show and for the rest of the day until I go to sleep.

You may not have heard of adenomyosis – but it’s as common as its relative, endometriosis, affecting up to one in 10 women.

The condition occurs when the tissue that normally lines the uterus grows into the muscular wall of the uterus and continues to thicken, break down, and bleed during each menstrual cycle.

An enlarged uterus and painful, heavy periods can result. Doctors don’t know exactly what causes adenomyosis, but it’s most common in women between the ages of 35 and 50 and usually goes away after menopause.

The disease causes heavy and painful periods. It can also impact fertility and lead to anemia due to menstrual blood loss.

Adenomyosis forms areas of small cysts that tend to grow monthly and cause pain and bloating.

Adrian Lower is a consultant gynecologist at Princess Grace Hospital in London. “It’s a bit like having a bruise in the womb,” he says. “It can lead to pain during sex, pain when opening the intestines, pain during menstruation.”

How is adenomyosis diagnosed?

The condition is diagnosed with an ultrasound or MRI, which, if adenomyosis is present, will show an enlarged uterus, with one wall of the uterus thicker than the other.

The condition is often confused with fibroids, Lower says, which are noncancerous growths that develop in the muscular wall of the uterus. Some doctors will recommend an MRI, he says, because fibroids and adenomyosis are easier to differentiate on an MRI scan than an ultrasound scan.

How is it treated?

In the past, treatment options were limited for women with adenomyosis. “25 years ago, adenomyosis was the most common cause of hysterectomy,” says Mr Joseph Aquilina, consultant gynecologist at St. Bartholomew’s and Royal London Hospitals. Fortunately, today there is a range of less drastic treatments available and most of them aim to manage the symptoms of the disease.

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“In the majority of cases,” says Lower, “adenomyosis is best treated by suppressing menstruation.”

The hormone progesterone is used to prevent a woman from getting her period, which means she won’t experience the severe menstrual pain or bleeding that occurs with adenomyosis.

Progesterone can be taken orally, as a combined birth control pill or progesterone-only mini-pill, transdermally, as injections, or through the uterus.

The Mirena IUD, which is an intrauterine device (IUD) that secretes progesterone, is Lower’s preferred treatment. “It’s the best because progesterone binds to receptors in the uterus and it’s the first place progesterone hits and suppresses endometrial growth.”

But hormone treatments aren’t for everyone, warns Aquilina. “Some women may not tolerate progesterone and may experience side effects such as depression, breast tenderness, acne and headaches.”

He agrees, however, that the Mirena coil is a favorable option because it offers “a very small dose of progesterone, about one-hundredth the dose”, compared to oral contraceptive pills.

It could be an interesting solution for women who experience side effects with progesterone and is about 60-70% effective in reducing blood loss and pain.

The surgical option

There is also a unique procedure called endometrial ablation, where the lining of the uterus is removed, sometimes with radiofrequency, sometimes with heated fluid. It’s very quick – the process itself can take as little as 90 seconds – and some hospitals will perform the procedure under local anesthesia.

Like the Mirena coil, it is around 60-70% effective and is even better when combined with the coil, a combination treatment which is now recommended by the NHS.

The downside of endometrial ablation is that it is not suitable for women who might want to get pregnant as it permanently impairs fertility.

Although adenomyosis is most commonly found in women between the ages of 40 and 50, it can also present in women in their 20s and 30s. For women who do not wish to undergo an intervention that would impact their fertility or take medication to suppress menstruation, there are non-hormonal treatments.

These include medicines to make periods less painful, such as mefenamic acid and tranexamic acid to reduce bleeding.

“It’s very rare for adenomyosis to end in hysterectomy now,” says Aquilina. “There’s a small percentage of women, and they’re usually patients with endometriosis or fibroids as well.”

What is the prognosis?

The outlook for patients who have had endometrial ablation combined with the Mirena coil is particularly good, with 90% of women not returning for hysterectomy.

Opening up about her struggles with the condition, Munchetty said that before she was diagnosed, she had experienced decades of painful and heavy periods. One of the reasons why adenomyosis often goes undiagnosed is that the pain is an integral part of menstruation.

Many women don’t know what an abnormal level of pain is or when to see a doctor.

Because adenomyosis is a chronic condition that will get worse over time, Lower encourages women to “seek medical advice if symptoms worsen.”

Aquilina says any woman whose quality of life is affected by her period every month should see a GP. “A red flag would be if she has one or two days a month where she’s completely incapacitated, when she can’t function.”

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