Adenomyosis

The wall of the womb is built from two different layers: the inner lining, which thickens each month and comes away with the period, and the thick muscle beneath it. In adenomyosis, islands of that lining push into the muscle and settle there. They answer to the same hormones as the normal lining: they swell and bleed inside muscle tissue, where the blood has nowhere to go. The womb enlarges, becomes firm and tender, and periods turn heavy and gruelling. It is neither a tumour nor a pre-cancerous change, but it wears daily life down badly, and many women wait years before asking for help because they have come to accept exhausting periods as their normal.

What happens inside the womb wall

The patches sitting in the muscle behave like small menstruating areas. Fibrous tissue grows around them, the muscle thickens unevenly, and the whole womb enlarges and feels soft yet dense on examination. That is where the dragging weight low in the abdomen comes from, and the feeling of a swollen belly even though weight has not changed.

The cause is not fully known. Damage to the border between the two layers seems to matter: childbirth, caesarean section, a scrape of the womb lining, surgery on the uterus. Adenomyosis is found mostly after the age of thirty-five, particularly in women who have given birth, and it often turns up alongside fibroids or endometriosis. It depends entirely on hormones, which is why it quietens down by itself after the menopause.

How it shows itself

• painful periods, with a dragging or cramping pain that often worsens year by year and spreads to the lower back and thighs;
• heavy periods with clots, a pad or tampon lasting an hour or two, and plans that have to be cancelled;
• pain low in the abdomen between periods, sometimes constant;
• bloating and a feeling of pressure in the abdomen, heaviness in the pelvis;
• pain during sex, particularly on deep penetration;
• signs of anaemia from blood loss: weakness, breathlessness on stairs, pallor, brittle nails, an urge to chew ice;
• passing urine often or constipation, if the enlarged womb presses on neighbouring organs.

Roughly a third of women notice nothing at all, and adenomyosis turns up by chance on a scan. Without symptoms there is nothing to treat.

When waiting is a bad idea

Book an appointment with a gynaecologist if periods have become clearly heavier or more painful, if the pain gets in the way of working and sleeping, if sex has become painful, or if the abdomen has stayed bloated for more than three weeks. Heavy periods that carry on for months almost always end in iron deficiency, and that is treated rather than endured.

Separately, there are complaints that must not be put down to adenomyosis until a doctor has looked:

• bleeding between periods or after sex;
• any bleeding after the menopause;
• spotting and abdominal pain when a period is late — a pregnancy outside the womb is possible;
• a pad or tampon soaked through in under an hour, several hours running, with dizziness, greying vision or a faint — call the emergency number for your country, 112 across Europe;
• sudden abdominal pain with fever, vomiting or unusual discharge with an odour.

These same signs occur with polyps, fibroids, infection, changes in the cervix and, less often, cancer of the womb or cervix. Having adenomyosis does not stop something else from being present at the same time, so the diagnosis is made after tests, not on the strength of matching symptoms.

How it is confirmed

It starts with questions: how many days the period lasts, how often protection has to be changed, whether there are clots, exactly when the pain comes. Keeping a diary for two or three weeks helps a great deal — it is more reliable than remembering in the room.

Then the doctor examines the abdomen and carries out an internal examination. The main test is an ultrasound scan through the vagina: it picks up the uneven thickening of the wall, small cavities within the muscle and the rounded shape of the womb. Where doubt remains, a magnetic resonance scan is arranged, since it shows the boundary between the layers well and helps separate adenomyosis from a fibroid. A blood count and iron stores are always checked. For a long time the diagnosis was thought to require removal of the womb and examination of the tissue under a microscope; today imaging settles it confidently.

What eases the pain and the bleeding

Treatment is chosen around whatever troubles most: the pain, the blood loss, or the wish to conceive. The gentlest options come first.

• anti-inflammatory painkillers, started the day before the pain is expected and continued through the first days, since they work better than when swallowed at the peak;
• medicines that cut the volume of bleeding, prescribed with a person's tendency to clot taken into account;
• the hormone-releasing intrauterine system, which thins the lining so periods become light and far less painful; this is often the first choice;
• hormonal contraception as a pill, patch or ring, and progestogen preparations, if the intrauterine system does not suit;
• medicines that switch the ovaries off for a while, in short courses, usually as preparation for surgery;
• iron for anaemia — without it strength does not come back, however well the womb is treated.

If none of that is enough, procedures are discussed: blocking the vessels that feed the womb, destroying the lining, or removing the womb altogether. The last of these ends adenomyosis for good but closes the door on pregnancy, so the decision is taken slowly and after everything else has been tried.

At home, warmth on the lower abdomen, a warm shower, gentle exercise and a transcutaneous nerve stimulation device all take the edge off. None of it touches the patches themselves, but it makes the bad days passable.

Pregnancy and planning ahead

Adenomyosis can make conception harder and raises the chance of miscarriage and of premature birth, because an altered wall receives the embryo less readily. It is not a verdict: plenty of women conceive on their own and carry a pregnancy through. If pregnancy has not happened within a year, or within six months past the age of thirty-five, it is worth investigating both partners and discussing treatments that do not block conception, or assisted reproduction. Anyone planning should know in advance that several of the medicines listed above are not compatible with pregnancy, and the regimen is changed before it begins rather than after.

Online consultation: what it can do

An online appointment is a comfortable way into a conversation that feels awkward and is easy to keep postponing. The gynaecologist goes through the period diary, judges whether the blood loss is within normal limits, says which tests and which scan are worth having before a face-to-face visit, and explains what to do with a scan report already in hand. The choice between tablets, an intrauterine system and surgery, the side effects of treatment already begun and plans for pregnancy all fit remote care. Examination, ultrasound and swabs do not, and heavy bleeding with dizziness or fainting needs emergency help.

This material is for information only and does not replace medical advice.