Adenomyosis explained

Most women have heard of endometriosis – a common condition affecting1 in 10 women where small pieces of the womb lining (endometrium) grow outside the womb and bleed in time with the menstrual cycle. Not many have heard of adenomyosis – a painful condition where the endometrial tissue grows inside the muscle wall of the womb, causing heavy periods – and neither had I until I had fertility treatment.

Adenomyosis can occur in any woman who still has periods, but it is most common in those aged 40-50 and affects around ten per cent of women who have endometriosis. The most common symptoms are painful, heavy or irregular periods, along with pre-menstrual pelvic pain. For some women, it also causes pain during sexual intercourse or related to bowel movements. Because it is difficult to diagnose, adenomyosis is under-recognised by GPs, and can severely impact sufferers’ quality of life if left unchecked.

Crippling effects

The actor Naomie Harris has spoken about her struggle with adenomyosis, and the writer Lena Dunham also devotes some space to in her memoir ‘Not That Kind of Girl’.

For me, the physically and socially crippling effects of adenomyosis began almost as soon as my periods started when I was 12 –although I wasn't diagnosed until I was in my 30s.

The pain and flooding that came with my periods left me in a constant state of panic at school, especially on days where we had PE, or during exams where you had to sit still for hours. Later, my career involved lots of business travel, and there were many nights where I lay alone on the floors of countless hotel bathrooms, writhing in agony because my standard painkillers didn't even touch the cramps.

In my mid-thirties and newly married I started fertility treatment, and as my periods began to last for weeks at a time I became severely anaemic from the increasingly heavy bleeding.

MRI referral

After repeated trips to my GP requesting ever-stronger pain relief because those I was taking weren't having any effect, I was finally referred for an MRI scan before I was about to begin yet another round of fertility treatment.

I knew the results were serious because the consultant asked to see me in his office straight after the scan. I was 37 years old and this was the first time I'd heard the word 'adenomyosis'.

Adenomyosis risks

The consultant explained the condition and told me that, generally, adenomyosis does not appear to reduce a woman’s chances of getting pregnant, although it may increase her risk of miscarriage or having a premature baby. However, in my case, it wasn’t such good news. He told me that my uterus was so deformed by adenomyosis that he believed I would never successfully carry a pregnancy to term. For me, the only solution to my chronic pain, the distended tummy that led many people to ask if I was pregnant, and the heavy periods that never stopped, was a hysterectomy. While this is by no means the most common outcome for women with adenomyosis, for those like me it may be the only resolution.If this is something you are going through, it's important to remember that adenomyosis is not caused by anything you have or haven’t done, and it’s not cancerous.

Mixed feelings

Getting a diagnosis is both a challenge and a relief. Although I was relieved to finally have an explanation for all the years of pain and menstrual misery I had experienced, facing up to the fact that I needed a hysterectomy was the opposite of the result that I had hoped fertility explorations would give me. It took me a few months to get my head around what all of that meant, but once I had accepted that surgery was the only option for me I went ahead with the operation. I’m a few years further down the road from that time in my life now and have been able to focus on the upsides it has given me. I am no longer living with pain or taking strong pain medication, and my general health has greatly improved. While it’s not the outcome I envisaged for myself, thanks to the support from family, friends, and health professionals, I have come to terms with the new shape of my life, and feel physically healthier than I have for decades. 

Adenomyosis Fast facts

In at least half of cases, adenomyosis can be detected by an internal ultrasound scan. If that does not clearly show adenomyosis, you may then be referred for a magnetic resonance imaging (MRI) scan.

Treatment options include:

• doing nothing – if symptoms are mild or you are trying for a baby
• medication to help reduce pain and bleeding
• hormonal medicines such as the combined oral contraceptive pill, progestogen-only pill or the coil
• hormone injections to cause a temporary and reversible menopause
• uterine artery embolisation, where tiny particles are injected into blood vessels through a catheter in the groin to cut off the blood supply to the adenomyosis
• hysterectomy

More information:

Adenomyosis Advice Association
Adenomyosis patient leaflet