Adenomyosis

Endometriosis's overlooked relative, in the wall of the womb. Heavy, painful periods that are treated as normal for years.

What it is

Tissue like the lining of the womb growing into the muscular wall of the womb itself. Each month it responds to hormones, bleeds into the muscle, and causes pain and swelling.

It is common, probably affecting around one in ten women, and it is badly under-diagnosed. It has historically been thought of as a condition of women in their forties who have had children, which meant younger women were not considered, and it is now recognised across the age range.

It often coexists with endometriosis and with fibroids, and the symptoms overlap, which is another reason it gets missed.

It can be diagnosed on a good-quality ultrasound or MRI by somebody looking for it, which is the qualifier that matters. For decades it was only diagnosable after hysterectomy, and that belief lingers.

Treatment ranges from hormonal options, including the hormonal coil, through to hysterectomy, which is the only definitive cure. Symptoms usually settle after the menopause.

Signs you might notice

Heavy periods, sometimes with large clots, and flooding. See heavy periods.

Severe period pain, often cramping and dragging, frequently starting before the bleeding.

A feeling of pressure or heaviness in the lower abdomen, and a bloated or enlarged abdomen.

Pain during sex.

Chronic pelvic pain between periods.

Anaemia from the blood loss, causing tiredness and breathlessness.

Some women have no symptoms at all.

Worth acting on: periods that stop somebody working, sleeping or leaving the house, or that need changing protection more than every two hours.

How it can affect day-to-day life

The dominant experience is being disbelieved. Severe menstrual pain is normalised from adolescence onwards, and women report years of being told periods are just like that.

The bleeding is a practical problem as much as a medical one: planning life around it, ruined clothes and bedding, and the exhaustion of chronic anaemia that is often untreated.

The pain is frequently managed with escalating painkillers rather than with treatment of the cause.

Fertility can be affected, and the interaction between wanting to conceive and the treatments that help is a real dilemma that deserves specialist discussion.

For anybody with a learning disability or communication difference, severe period pain may show as monthly distress or behaviour change, and it is often not connected to the cycle at all.

Supporting someone well

Keep a symptom and bleeding diary for three cycles. It is the single most useful thing to take to an appointment.

Say the word adenomyosis, and ask for a transvaginal ultrasound with somebody looking for it specifically.

Ask for a full blood count. Anaemia from heavy periods is common, treatable and repeatedly missed.

Ask about the hormonal coil, which is often first-line and often not offered.

Ask for referral to gynaecology if treatment in general practice has not worked.

Track periods against distress in anybody who cannot describe pain.

Treat the pain properly rather than escalating painkillers indefinitely.

Where to get help

A GP practice, asking for imaging rather than reassurance.

Gynaecology, and a specialist endometriosis or pelvic pain centre where symptoms are severe.

Endometriosis UK run a helpline and cover adenomyosis, which almost no other charity does.