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Beth's story: Living with adenomyosis

This Adenomyosis Awareness Month, Beth opens up about living with this chronic, painful condition

Black and white photo of a white blonde woman looking serious. The background is words describing periods such as agony, pain, flooding.

Beth is one of the many thousands of women in the UK living with the health condition adenomyosis. Adenomyosis is when the lining of the womb grows into the muscle wall, which can cause heavy, painful and/or irregular periods.

The mother-of-one, who lives in Edinburgh with her family, was diagnosed in her 30s after 20 years spent in agony. She also has endometriosis.

Beth shares her story.

‘I was 15 when I got my first period. I remember being curled up in the foetal position in bed with hot water bottles; it was agonising and completely debilitating.

My mum and I just thought it was period pain – something all women experience, but some have it worse than others – so I didn’t seek any help for it.

‘I was in agony’

Once, while I was on a gap year before starting university, my period pain was so severe that it made me vomit. On the same trip, I spent three days in Hong Kong, but was forced to stay in bed the whole time because of the pain. I was in agony.

At university, I had to leave a lecture because the pain got so bad and call my friend from a toilet cubicle to come and drive me home. I couldn’t stand up without help, and definitely couldn’t make it home on public transport.

I went to see a doctor who prescribed mefenamic acid, which is like ibuprofen and is prescribed for period pain.

Unfortunately, I either didn’t realise or wasn’t told that I had to take it pre-emptively as it stops the pain from kicking in. Instead, I would wait until the pain was unmanageable, by which point the medication didn’t really work for me.

I didn’t know there was more that could be done. I spent years trying to manage the pain as best I could, thinking it was just bad period pain.

I had never heard of endometriosis or adenomyosis. I knew the contraceptive pill might help but didn’t take it as I was afraid of the side effects.

Apart from that, I thought the medication the doctor had given me was the only other type of treatment available.

I even had an ultrasound scan in my 20s when I started having some bleeding in between my periods, but it didn’t pick up any problems. I was told there was nothing wrong with me and was sent away.

It was only when I was in my 30s that I got my diagnosis of adenomyosis and endometriosis.

I had been trying for a baby but was having difficulty conceiving, so I went to my doctor. During our conversation, I asked if I might have endometriosis – one of my friends had been diagnosed and suggested I should be tested for it – but this was dismissed.

They said I couldn’t have endometriosis because I didn’t experience pain during sex. While this is a symptom of endometriosis, not every woman with the condition experiences it.

The doctor referred me to a fertility service and while I was there, I told the consultant that I had very painful periods. They referred me for a laparoscopy and I was diagnosed with endometriosis and adenomyosis.

During the surgery, the endometriosis lesions were ablated. This is when the endometrial tissue is destroyed through heat, a laser or a beam of special gas.

Treatments for these conditions include painkillers, hormone therapies like the contraceptive pill, and surgery. For adenomyosis, surgery involves a hysterectomy.

Aside from paracetamol, I couldn’t choose any of these options because my partner and I were trying for a baby. I had to wait until after our son was born before I could start taking mefenamic acid again.

Now that I’m taking it before the pain gets too bad, I’m finding mefenamic acid works much better for me. Even alongside paracetamol though, it doesn’t take the pain away completely. I still occasionally have to spend a day in bed.

‘I’d encourage other women to be proactive and persistent’

I regret not going back to the doctor straight away when the mefenamic acid didn’t work for me first time around. There are treatment options available, even if they are limited.

Doctors rely on us going back to them and asking for more help, so I’d encourage other women who may be struggling to be proactive and persistent.

Very painful periods are not ‘normal’ and should not be dismissed.

Not every doctor will know every detail of every health condition, so if you need to, keep going back and asking for help.’

April is Adenomyosis Awareness Month. It's thought up to one in 10 women in the UK live with this condition. Treatment options are limited, but lifestyle changes can also help.

This is why we fund pioneering research – we want to find new and better ways to diagnose and treat conditions like adenomyosis to improve the lives of women and girls everywhere.

Read more about what adenomyosis is and watch our webinar about what can be done to improve adenomyosis symptoms.

You can also find more information in our periods information hub.