Adenomyosis: Your questions answered

Here to discuss adenomyosis and other important women’s health issues in expert detail are leading gynaecological experts at London Gynaecology, consultant gynaecologist Mr Narendra Pisal, and Dr Ayanthi Gunasekera, specialist registrar in gynaecology.

Why is so little known/spoken about adenomyosis?

Adenomyosis is a common but under-recognised condition. It’s characterised by an enlarged uterus due to infiltration of the uterine lining into the muscle wall. Adenomyotic tissue also swells up and bleeds within the uterine wall during menstruation, which can cause severe period pain, cramps and heavy periods.

It’s often diagnosed on an ultrasound or MRI scan. This is where an enlarged uterus’ wall appears with one side thicker than the other.

This condition is difficult to diagnose. This is because the symptoms are common and affect many women. A large proportion have heavy and painful periods and accept the symptoms as ‘normal for me’. Often, they don’t know how heavy or painful their periods are supposed to be. When they do seek medical attention, doctors may start medical treatment to control symptoms and a scan may not be carried out, or may not actually pick up the condition.

There are many other causes of heavy and painful periods such as fibroids and endometriosis. They are more well-known. Both fibroids and endometriosis often coexist with adenomyosis, in fact. Adenomyosis is also known as ‘internal’ endometriosis. This is because the uterine lining grows inside the uterine wall, whereas with endometriosis, it grows outside the uterus.

The medical community and women are now more aware of this condition. The increasing availability of ultrasound scans will lead to higher detection rates. This is good news indeed, because early diagnosis will help to get prompt treatment and improve the quality of life for women affected by this condition. Treatment options are still limited, however, as adenomyosis is often embedded in the muscular wall of the uterus.

How many people actually suffer from it? 

 Yu et al found a prevalence of 1.03 per cent in their study population (published in 2020)

Yu O, Schulze-Rath R, Grafton J, Hansen K, Scholes D, Reed SD. Adenomyosis incidence, prevalence and treatment: United States population-based study 2006-2015. Am J Obstet Gynecol. 2020 Jul;223(1):94.e1-94.e10. doi: 10.1016/j.ajog.2020.01.016. Epub 2020 Jan 15. PMID: 31954156.

A study done by Natfalin et al in 2012 (London) found Adenomyosis was present in 206 of 985 [20.9 per cent; 95 per cent confidence interval (CI): 18.5–23.6 per cent] women having an ultra sound carried out for a gyneacological complaint.

10. Naftalin, W. Hoo, K. Pateman, D. Mavrelos, T. Holland, D. Jurkovic, How common is adenomyosis? A prospective study of prevalence using transvaginal ultrasound in a gynaecology clinic, Human Reproduction, Volume 27, Issue 12, December 2012, Pages 3432–3439, https://doi.org/10.1093/humrep/des332

Are painful periods normal? What can they be symptoms of? How can we tell the difference?

Some of the most common reasons for painful periods include:

• Endometriosis: Where the inner lining of the uterus is inside the abdomen causing painful periods (and sometimes also pain during sex)
• Fibroids: Common benign (non-cancerous) lumps of the uterine muscle, which can cause painful and heavy periods.
• Adenomyosis: Where the lining of the uterus is in the wall of the uterus and can cause of bruising during periods, which is painful.
• Often, heavy periods with clots are painful too.
• When there is no other physical explanation, hormonal imbalance is often the cause.

During periods, prostaglandins are released and are responsible for uterine cramps. Sometimes, these prostaglandins can also cause other symptoms during periods like loose motions, nausea and vomiting. Some women have more painful periods than others with no reason, but often there is. And we can always do something to alleviate the pain, even if everything is normal.

What are the symptoms of adenomyosis? How do we differentiate them from other chronic illnesses that affect women?

Typical adenomyosis symptoms are heavy and painful periods. Sometimes, the uterus becomes so enlarged that a lump can be felt in the lower abdomen. This can also cause pressure on the bladder and bowel causing urinary frequency and constipation. Having said that, many women don’t have any symptoms at all.

Many women live with this condition without being diagnosed. A lot of women with adenomyosis have such bad periods that they have to put their life on hold for the duration of it. It significantly affects their overall quality of life including their work.  Due to heavy bleeding, it can lead to anaemia, extreme tiredness and also affect performance at work and sports.

Adenomyosis and endometriosis often occur together. The pathology (presence of tissue similar to uterine lining in atypical places, in endometriosis, it is outside the uterus whereas in adenomyosis, it is present in the uterine muscular wall) is similar in both cases.

Do you think that healthcare is sexist? Many women I’ve spoken to have said that their pain was put down to ‘women’s problems’ or even had been told they had mental health problems…

Unfortunately, periods and women’s problems were not something you spoke about openly until recently. Thankfully this is changing. Many women have suffered in silence but are now accessing healthcare and talking about their health issues because these issues are - and always have been - genuine. There are more female doctors in the health service now and I like to think this, along with increased awareness, will lead to better care and earlier diagnosis.

Can adenomyosis decrease the chance of getting pregnant?

There’s usually no impact in mild cases, and pregnancy can often help the condition by blocking the periods for the duration of pregnancy and even longer. In more advanced cases where the uterine cavity is enlarged significantly, it can make it more difficult for women to get pregnant. 

When I first heard I had it I thought I should give up my hopes of having a baby. Is it really this serious?

In the past, a hysterectomy was the only definitive way to diagnose adenomyosis. However, with high resolution ultrasound and MRI scans now available, it is easier - and much less impacting - to make a diagnosis. 

Are there any figures around fertility and adenomyosis? 

In mild cases, adenomyosis shouldn’t affect pregnancy. More severe cases can negatively affect fertilisation, implantation and increases the risk of miscarriage.

Are there different levels of adenomyosis? How is that best treated to preserve fertility? What other examples are there and how can they be treated?

Adenomyosis can be difficult to treat. Often, the first line of management is supportive management. This is with medication to make the periods less painful (painkillers and antispasmodic medication such as mefenamic acid) and to reduce the bleeding (using tranexamic acid). Sometimes, taking the minipill or the contraceptive pill back-to-back can also stop periods and help with symptoms. The Mirena intrauterine device is also helpful in significantly reducing the symptoms. Adenomyosis also improves during and after pregnancy, and after menopause.

Uterine artery embolisation (UAE) is usually reserved for fibroids but this treatment is also very effective for treating adenomyosis. The uterine blood supply is blocked by an interventional procedure carried out through the blood vessels in the groin. Hysterectomy is often reserved for extreme cases where the symptoms are resistant to other forms of treatment and the women’s family is complete.

Can you manage it with diet etc? Are there foods etc that are particularly good/bad?

There are no proven diets that help with period cramps, endometriosis or adenomyosis on a consistent basis. One small study showed some improvement with a gluten free diet. There has been some work into the benefits of reducing red meat consumption and trans fats.

A good place to start would be a balanced diet with a good proportion of fibre, iron rich foods and food rich on essential fatty acids. Stay well hydrated and get regular exercise. Plus, natural endorphins are great painkillers. Keep a food diary and avoid any food that triggers your symptoms.

Do you require gold-standard adenomyosis treatment? To arrange a consultation with Mr Pisal, visit his Top Doctors profile.