Adenomyosis

Adenomyosis in plain language

Adenomyosis is a condition in which tissue similar to the lining of the womb (the endometrium) grows into the muscle wall of the womb (the myometrium). This tissue responds to the monthly cycle of hormones, the muscle around it thickens, and over time the womb may become enlarged (bulky) and tender.

Adenomyosis may be spread through much of the wall (diffuse adenomyosis) or gathered in one area (focal adenomyosis). A gathered area sometimes forms a lump called an adenomyoma, which can look like a fibroid (a non-cancerous growth of the muscle of the womb) on a scan.

The cause is not fully understood. Adenomyosis is most often diagnosed in women in their thirties and forties and is more common in women who have had children, although it is increasingly recognised in younger women. It usually settles after the menopause.

Symptoms

Some women have no symptoms. When adenomyosis does cause them, the most common are:

• heavy periods, sometimes with flooding or clots, which can lead to anaemia (a low blood count) and tiredness
• painful periods, which often become worse over the years
• pelvic pain between periods, or a feeling of heaviness or pressure
• pain deep inside during sex
• bloating

Fibroids, polyps (small overgrowths of the lining of the womb) and endometriosis (similar tissue growing outside the womb) can cause similar symptoms, and more than one may be present. I look for all of them when I assess you.

Adenomyosis, endometriosis and fibroids

In endometriosis, the tissue grows outside the womb, for example on the lining of the pelvis, the ovaries or the bowel. Both conditions respond to hormones and cause painful periods, and they often occur together, particularly in women with deep endometriosis (endometriosis that grows into the tissue behind the womb, the bowel or the bladder).

Heavy bleeding is more typical of adenomyosis, while pain on opening the bowels or passing urine around a period points more towards endometriosis. A hysterectomy (removal of the womb) removes adenomyosis, because adenomyosis is confined to the womb, but it does not remove endometriosis elsewhere in the pelvis, which needs its own treatment.

Fibroids are distinct, rounded growths with a clear edge, while adenomyosis spreads through the muscle without one and usually makes the whole womb bulky. The two often occur together and can look alike on a scan. A fibroid can usually be removed while keeping the womb (a myomectomy); adenomyosis usually cannot.

How I diagnose adenomyosis

The first test is a specialist transvaginal ultrasound scan, in which a slim probe is placed gently in the vagina. National guidance from NICE (the National Institute for Health and Care Excellence) recommends this scan first when adenomyosis is suspected in women with heavy periods ^[1]. It can show the typical features, which specialists in gynaecological ultrasound have agreed between them: a thickened, uneven muscle wall, small cysts within the muscle, and a blurred boundary between the lining and the muscle ^[2].

If you would prefer not to have a transvaginal scan, or it is not suitable for you, an abdominal scan or an MRI scan (magnetic resonance imaging) can be used instead, although each has its limitations. I also suggest MRI when the ultrasound findings are unclear, when adenomyosis and fibroids need to be told apart, or to help plan surgery.

Mild adenomyosis can be missed on any scan, so I interpret the result alongside your symptoms and examination. If your periods are heavy, I check a blood test for anaemia, and if your bleeding is irregular I may suggest a hysteroscopy (looking inside the womb with a slim telescope).

Treatment options

Treatment depends on your symptoms, whether you hope to become pregnant and what is important to you. If your symptoms are mild, leaving the adenomyosis alone may be the right option for you. I will explain every reasonable option, including no treatment, give you my recommendation and a personal plan, and then we decide together.

Medicines and hormone treatments

• Pain relief. Anti-inflammatory painkillers, taken regularly from the start of a period, ease pain and can reduce bleeding a little.
• Medicines to reduce bleeding. Non-hormonal tablets, taken only during a period, can reduce heavy bleeding.
• A hormone-releasing coil. A small device placed in the womb that releases a hormone locally. NICE suggests considering it as the first treatment for heavy periods when adenomyosis is suspected or diagnosed ^[1], and for many women it makes periods much lighter and less painful. Irregular bleeding is common at first, so I suggest allowing about six months before we judge it, and then a review.
• Other hormone treatments. The contraceptive pill or tablets containing a single hormone can make periods lighter or stop them.
• Treatments that temporarily switch off the ovaries. These usually stop periods for a time. A small dose of hormone replacement is often added back to protect the bones and ease menopausal symptoms.

Hormone treatments control symptoms while you use them. They do not cure adenomyosis, and symptoms often return when they stop. Many are not suitable while you are trying to conceive. Some, including the hormone-releasing coil and the contraceptive pill, also work as contraception, although not all do, and some of the treatments that switch off the ovaries need separate contraception alongside them.

Procedures

• Endometrial ablation. A short procedure through the cervix (the neck of the womb) that destroys the lining of the womb to reduce bleeding. It is only for women who do not want a future pregnancy: a pregnancy afterwards is risky and should be avoided, so contraception is still needed. It tends to work less well when adenomyosis is present, particularly when it lies deep in the muscle wall. In a French study of 43 women with adenomyosis, bleeding was better in more than nine in ten at six months but in about two in three at three years, and about one in five had a hysterectomy within three years ^[3]. In a Dutch study, women whose ablation had failed were about twice as likely to have deep adenomyosis as women who had a hysterectomy without an ablation first ^[4].
• Uterine artery embolisation. Blocking the blood supply to the affected muscle, carried out by an interventional radiologist (a specialist in treatments guided by X-ray images). It is used for adenomyosis in some centres. In a review that pooled the published series, about eight in ten women reported that their symptoms improved, but these were observational studies, so the evidence is limited ^[5]. I can refer you to discuss it.
• Surgery that keeps the womb. For a few women, when the adenomyosis forms a distinct lump (an adenomyoma), it can be cut out while keeping the womb (adenomyomectomy). It is not a routine operation, and whether it is right has to be weighed carefully for each woman. It leaves a scar in the wall of the womb that can tear in a later pregnancy, a risk reported at up to about 6 in 100 ^[6], and no trial has shown that it improves the chance of having a baby ^[7]. If it might be an option for you, we look at it together in detail.
• Hysterectomy. Removing the womb, for women who do not want a future pregnancy. I explain it below and on the hysterectomy page.

Adenomyosis, fertility and pregnancy

Many women with adenomyosis become pregnant. A review pooled nine observational studies of IVF (in vitro fertilisation). About four in ten women with adenomyosis became pregnant with IVF, compared with about five in ten women without it, and about one in three of those pregnancies miscarried, compared with about one in seven ^[8]. The studies differed a good deal, and observational studies cannot show that adenomyosis itself is the cause.

A larger review also found a higher chance of miscarriage with adenomyosis and, in women with endometriosis, more complications later in pregnancy, such as premature birth. Its authors suggest that, until there is better evidence, women with these conditions are looked after as higher risk in pregnancy ^[9], which your obstetric team (the doctors and midwives caring for you in pregnancy) can take into account.

Some fertility specialists suggest a few months of hormone treatment before a frozen embryo transfer (placing an embryo frozen during IVF into the womb), and whether this improves the chance of pregnancy is not yet clear ^[8].

Surgery to remove adenomyosis is unlikely to improve your chance of having a baby. No randomised trial has shown that it does, and the operation leaves a scar in the wall of the womb that has to be taken into account in a later pregnancy ^[7].

If you are trying to conceive, the choice of treatment is narrower, and I will help you balance your symptoms against your plans. As an honorary consultant at King’s Fertility and a consultant at the CRP Clinic, I am used to planning treatment with fertility teams.

When a hysterectomy is the right choice

For women whose symptoms continue despite other treatment, and who do not want a future pregnancy, a hysterectomy is the only treatment that removes adenomyosis completely. The womb is usually removed together with the cervix. The ovaries can often be kept: whether to remove them depends on your age and circumstances, and we will decide together.

Even when they are kept, the ovaries may stop working sooner than they otherwise would. In a study that followed women for up to five years after a hysterectomy without both ovaries removed, about 15 in 100 showed on a blood test that their ovaries had stopped working within four years, compared with about 8 in 100 similar women who had not had the operation. Whether the operation itself or the condition behind it is the cause is not known ^[10].

I usually carry out hysterectomy by keyhole surgery (laparoscopic or robotic surgery through several small incisions). When the womb is large or the operation is likely to be complex, for example because of endometriosis or previous surgery, I prefer to perform the operation robotically. The three-dimensional view of the robotic (da Vinci) system, magnified up to ten times, and its instruments that bend like a wrist allow precise work deep in the pelvis, and it suits long, complex operations.

For complex operations, the Royal College of Obstetricians and Gynaecologists concluded in 2022 that robotic surgery can be considered safe and a more effective tool than conventional keyhole surgery ^[11].

I will recommend the approach that suits your operation and explain why. Keyhole surgery is not suitable for everyone, and occasionally an open operation is the safer choice. Since 2013, more than 99 in 100 of my abdominal operations have been keyhole rather than open, and around one in a thousand has needed to be changed to open surgery (about these figures).

Most women stay one night in hospital. I usually advise about four weeks before returning to work; if you work from home and need to, light desk work after about two weeks is often possible. Heavy lifting should wait for around six weeks. The main risks are bleeding, infection, injury to the bladder, bowel or ureters (the tubes from the kidneys to the bladder), blood clots and, occasionally, the need to convert to open surgery. A hysterectomy is permanent, so we will talk through what it means for you, including for your body, your feelings and your sex life, over more than one conversation.

How I can help

At your first consultation I take a careful history and, with your permission, examine you. At Nuffield Health Parkside Hospital in Wimbledon and the CRP Clinic in Epsom, I carry out the scan myself during the consultation, so we can usually discuss it at the same visit. The CRP Clinic accepts Bupa and self-pay patients only. At Spire St Anthony’s Hospital in Sutton and Ashtead Hospital, the scan is arranged separately: I order it, you have it at the hospital, and I see you again to go through the results.

If you have had scans or treatment elsewhere, my practice manager, Helen, can send you a secure link to upload your reports before your appointment. Consultations are in English or Arabic, in person or by video. You can find my clinics and fees on their own pages.