Adenomyosis: symptoms, causes, diagnosis and treatment

The NHS divides the symptoms into those that affect your periods and those that can happen at any time in the menstrual cycle. Some people with adenomyosis have no symptoms at all.

Endometriosis UK says the symptoms are very similar to those of endometriosis, which is one reason the two conditions are often confused. It also notes that pain during or after sex can occur in both, but people with adenomyosis more often find it happens afterwards and can last for several hours.

• Painful periods. The NHS says the pain may be severe and stop you doing your usual activities.

• Heavy bleeding during your period. Endometriosis UK also lists periods that last longer than seven days.

• Pelvic pain, meaning pain in the lower part of your tummy. Endometriosis UK describes a dragging or heavy sensation in the pelvis that can happen at any point in the cycle.

• Bloating, heaviness or fullness in the tummy.

• Pain during sex.

• Difficulty getting pregnant (Endometriosis UK lists this among the symptoms).

Endometriosis UK defines adenomyosis as a condition in which cells similar to those in the lining of the womb grow into the muscle of the womb wall. These cells respond to the hormones of the menstrual cycle. Found within the wall, they can cause inflammation and pain and can make the womb wall thicker and larger.

Two patterns are described. Diffuse adenomyosis is when it is found throughout the whole of the womb wall. An adenomyoma is when it is found in a specific area of the womb wall and forms a lump in the muscle.

It is important to know what adenomyosis is not. Endometriosis UK states it is not contagious, not an infection and not a cancer.

The main difference is where the womb-lining-like cells are found. Endometriosis UK says that in adenomyosis they are in the muscular wall of the womb, while in endometriosis they are outside the womb, on the lining of the pelvis, and may be in the ovaries or involve other pelvic organs such as the bowel or bladder.

The NHS makes the same distinction, describing endometriosis as tissue similar to the lining of the womb growing in other places, such as the ovaries or fallopian tubes. Endometriosis UK adds that some people have adenomyosis or endometriosis on their own, but it is common to have both.

There is no single treatment; the aim is to ease symptoms. The NHS lists the following as options if you are diagnosed with adenomyosis, with surgery only if they do not work.

NICE guidance on heavy menstrual bleeding says to consider a levonorgestrel-releasing intrauterine system (LNG-IUS) as the first treatment when adenomyosis is suspected or diagnosed. NICE advises waiting for at least 6 cycles to see the benefits, and says bleeding patterns can change, particularly in the first few cycles and sometimes for longer than 6 months.

Endometriosis UK describes GnRH analogue medicines as drugs that stop the ovaries being stimulated, stopping oestrogen production and causing a temporary, medically induced menopause. It says it can be several months before they start to offer relief, so you should stay in touch with your GP if you try them.

The NHS says that if hormonal treatments and medicines do not work you may need surgery, which could be a hysterectomy or surgery to remove the lining of the womb (endometrial ablation).

Endometriosis UK adds that if the adenomyosis is localised and has formed a lump, surgery may cut it out. It says hysterectomy is recommended in some cases and is only suitable if a family is complete or there are no plans for pregnancy in future. It describes hysterectomy as a successful and curative treatment for the majority of people, while pain symptoms can remain for some.

The NHS suggests three things that can help with period pain or pelvic pain caused by adenomyosis. These do not treat the underlying condition but may make symptoms easier to live with.

• Use a heat pad or hot water bottle wrapped in a tea towel on your tummy.

• Try a TENS machine, a small device that uses mild electrical impulses to reduce pain.

• Take painkillers such as paracetamol or ibuprofen.

The NHS says it is not clear what causes adenomyosis. You may be more likely to get it if you are over the age of 30 and have given birth.

Endometriosis UK says it is usually diagnosed later than endometriosis, most often in people in their late 30s to 40s. It can also affect teenagers and people in their 20s.

The NHS says a GP may ask about your periods, feel your tummy for swelling or bloating and may ask to do an internal examination. You can ask for a female doctor when booking and can have a friend, family member or member of staff in the room. Further tests may be needed to find the cause of your symptoms or to rule out similar conditions such as endometriosis. The NHS lists ultrasound and MRI scans.

Endometriosis UK suggests taking a pain and symptoms diary to your first visit, recording how long your periods last, how painful and heavy they are, and whether sex is painful during or after and for how long.

On scans, Endometriosis UK says an ultrasound or MRI can in some cases detect adenomyosis by showing a thickening of the muscular layer of the womb (the myometrium) and sometimes an uneven pattern in the tissue. In other cases the changes are subtle, so a diagnosis is not always possible with a scan.

NICE guidance says to offer transvaginal ultrasound, in preference to transabdominal ultrasound or MRI, to women with heavy menstrual bleeding who have significant period pain or a bulky, tender womb on examination that suggests adenomyosis. It also reminds clinicians that pain associated with heavy bleeding may be caused by endometriosis rather than adenomyosis.

Endometriosis UK says many people with adenomyosis will be able to get pregnant naturally, while others may struggle. It states that adenomyosis can affect fertility and increase the risk of miscarriage, and advises talking to your GP if you are struggling, as referral to a fertility specialist may help.

This matters for treatment choices. Several of the treatments above are hormonal contraceptives, and hysterectomy is only suitable if you do not plan a pregnancy in future, so it is worth discussing your plans with your doctor before choosing.

Endometriosis UK says the symptoms should improve and go away as menstruation stops, because the cells are no longer responding to monthly hormonal fluctuations. It adds that some people continue to have heaviness or discomfort because the enlarged womb is still there.

The NHS says to ask for an urgent GP appointment or get help from NHS 111 if your pelvic pain or period pain is severe or worse than usual and painkillers have not helped.

It lists reasons to see a GP in a routine appointment, and these are the signs to bring up.

• Your periods become more painful, heavier or irregular.

• You have pain during sex.

• Heavy periods are affecting your life or you have had them for some time.

• You have been feeling bloated for a while (about 3 weeks).

• You bleed between periods or after sex.

On the NHS, assessment usually starts with your GP, who may arrange an ultrasound or MRI scan and start treatment such as a hormonal coil or tablets. If symptoms persist or treatments do not work, a referral to a gynaecology team is the usual next step.

Some people choose a private gynaecology consultation, often for quicker access to scans or specialist review. Adenomyosis can be subtle on imaging, so it is reasonable to ask who will interpret the scan and whether adenomyosis and endometriosis will both be considered. In either setting your GP should be kept informed so your records stay complete.