‘Have you ever thought about getting pregnant?’
Emma Prach froze. She was just 17, her hair streaked with purple from experimenting at school, and unsure if she even wanted kids.
But according to the doctor, having a baby could stop her endometriosis pain, which caused her to regularly vomit, cry and pass out.
‘The suggestion took my breath away’, Emma, now 21, tells Metro. ‘I felt so hopeless.’
An investigation by Metro can reveal that more than three quarters of women with endometriosis have been told to get pregnant by doctors. The condition impacts 1.5million women in the UK.
The finding comes despite the fact there is no clinical evidence to support pregnancy as a long-term solution to endometriosis.
In partnership with Endometriosis UK, Metro surveyed 1,073 women with endometriosis and found 79% with the debilitating condition were given this same solution, a figure the charity has labelled a healthcare ‘scandal’.
With no helpful medical advice, Emma wiped smudged makeup from her eyes and took the three-hour bus ride home to Lanarkshire.
Now, four years later, she relies on strong, addictive painkillers such as naproxen and co-codamol to take the edge off.
It was a solution also offered to me at the age of 21, a year after my endometriosis diagnosis. My pain was so bad I would fall over when sharp lightning pains shot up my sides.
‘Just get pregnant,’ my gynaecologist said. ‘It stops the pain because you won’t get a period.’
I left my appointment and cried hysterically in the hospital car park, feeling utterly defeated. I’d waited weeks for that advice, and wasn’t even offered pain killers.
Endometriosis and pregnancy
Endometriosis is a condition where cells similar to those in the womb lining grow in other parts of the body, usually on the ovaries, outside the womb and on the fallopian tubes.
This tissue then bleeds during your period, which can cause severe pain – although this pain can occur outside of menstruation too. For example, you can get pain in your lower tummy and back, pain during sex, extreme fatigue, and pain of bleeding in your chest and shortness of breath.
There is no cure for this condition. Doctors may suggest pregnancy because you no longer get your period when you are pregnant, so the theory is your pain will decrease or disappear, as your endometrial tissue won’t bleed and cause symptoms. There are also hormonal fluctuations which can help ease pain.
According to Endometriosis UK, pain can improve but can also return when you get your period after pregnancy. There are also reports of women who experience more pain in the first few months of pregnancy.
Source: NHS
But being pregnant doesn’t put a stop to your symptoms, as Angie Newland, 52, discovered.
She’d had her first baby at 24 after doctors said she’d likely struggle to conceive due to her endometriosis, which causes fertility issues in around 30% of women.
‘Doctors said I wouldn’t be able to have children if I left it any longer because of how severe my endometriosis was,’ Angie tells Metro. ‘My pain didn’t stop straight away, and once I gave birth the pain when my periods started again was horrendous.
‘I tried the Mirena coil, HRT patches, tablets – nothing worked. So a consultant said to me “well, just have another baby”.’
‘I was absolutely horrified, having a baby didn’t improve my endometriosis, it actually made it 10 times worse,’ Angie adds.
‘Not only was I trying to raise my little girl, but I was also trying to cope with my endometriosis. It wasn’t manageable.’
Finally Angie underwent a hysterectomy at 30 which put a stop to her symptoms, and she now volunteers four hours a week on the Endometriosis UK helpline to support other women.
Doctors haven’t received endometriosis education
Pregnancy being pedalled as a cure or painkiller for endometriosis is likely a result of poor endometriosis knowledge among doctors.
‘Pregnancy does not take the endometriosis away – there is no cure and pain can return after giving birth when your period returns,’ explains endometriosis specialist practitioner, Jo Hanley.
‘The majority of medical students are introduced to endometriosis as a part of wider gynaecology training, which is often far too simplistic, failing to cover the complexities, challenges and impact of the condition.’
She tells Metro specific endometriosis training isn’t mandatory for GPs, pharmacists, nurses and A&E workers, who are all points of contact for endometriosis sufferers.
It’s not surprising almost half of all women visited their GP 10 or more times with symptoms prior to receiving a diagnosis, or that 52% visited A&E at least once, with fewer than a fifth being referred to gynaecology upon their first visit.
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It’s also not mandatory for a hospital to have an accredited endometriosis centre which specialise in providing ‘high-quality care to women’ with the condition.
Jo believes this lack of education and suggestion of pregnancy as a solution to pain is ‘insensitive’ and ‘adds unnecessary pressure’ to patients who may not wish to have children at that time, or ever, as well as those struggling with their fertility’.
While 60 to 70% of women with the condition will be able to conceive naturally, a third of women may struggle with infertility or need to use alternative methods. The miscarriage rate also increases from one in five to one in four for women with endo.
What do healthcare professionals have to say?
Endometriosis UK is calling for all healthcare practitioners including GPs, gynaecologists and A&E staff to receive mandatory education on the condition. Faye Farthing, from the charity, tells Metro: ‘As one of the most common gynaecological conditions in the UK, it is a scandal that there continues to be such poor awareness and understanding of endometriosis.’
Metro’s findings were put to the Department of Health and Social Care (DHSC) and NHS England and both agreed pregnancy wasn’t a legitimate solution.
‘It’s unacceptable women are being given incorrect and inappropriate advice,’ a DHSC spokesperson tells Metro. ‘Women deserve to have it taken seriously, not dismissed and told to go get pregnant.’
DHSC said NICE guidelines had been updated to aid faster diagnoses, and £80 million has been invested to give GPs faster access to specialist gynaecology advice.
Dr Sue Mann, national clinical director in women’s health for NHS England, adds: ‘It’s unacceptable – no-one should be advised pregnancy as a medical treatment, it should only ever be a choice, made if, and when, a woman decides to – with the role of a clinician to facilitate informed choice.
All medical students graduating from this year (2024/25) onwards now must pass the General Medical Council’s Medical Licensing Assessment, which contains women’s health topics, including endometriosis.
It’s little reassurance for Emma, who still relies on hot water bottles to ease her pain. ‘I’ve been left with nothing,’ she says. ‘I’m not on any treatments right now, and the doctors actually discharged me from their care without telling me.
‘It was crazy that, when I was looking for support, I was offered something that quite literally takes over your life.’
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