The women left in agony for years by doctors who say it’s just their periods: Mistake cost Manuela her marriage – and thousands more suffer needlessly
From the age of 17, Manuela Brun suffered debilitating pain for most days every month.
For 25 days a month she had excruciating pain in her tummy and pelvic area, as well as having her period almost every day.
She went to the GP more than 30 times over 13 years, only to be told it was normal period pain, and she should take over-the-counter painkillers.
Five years ago, Manuela, from Sutton, Surrey, nearly lost her job as a sales account manager because she had to take several days off work every month because the pain was so bad.
She was on antidepressants because of the pain and her marriage broke down, she says, at least in part because she was unable to have an intimate relationship with her husband.
‘I’m not a wimp – after speaking to other women, I discovered the pain I was in was not normal,’ recalls Manuela, now 39. ‘I’d have days every month where I was writhing in pain.
‘When I saw my GP, he said it was just regular period pain and told me to get on with it. He recommended paracetamol or ibuprofen, which I took for about ten years, but they never really helped.
‘I was never referred to a consultant despite the huge effect it was having on my life. I became depressed, withdrawn, unstable and had no social life. I couldn’t do exercise because the pain was so bad and I was constantly bleeding, so I gained weight. I had only five days in a month where I wasn’t in pain. It was awful.’
Four years ago, Manuela changed GP because she was so fed up – and her condition was finally diagnosed.
She has endometriosis, a condition affecting two million women in Britain, where tissue like that found in the womb lining grows elsewhere in the body, commonly in the pelvic area and on the ovaries.
As with the womb lining, this tissue breaks down and bleeds every month, but because there is no route for this blood to leave the body, it causes inflammation, pain and scar tissue.
The condition can cause pain-related fatigue, and can lead to painful sex and infertility – fortunately Manuela was able to get pregnant and has two girls, aged nine and 13, with her estranged husband.
Endometriosis can cause bowel problems because the tissue releases a substance that can irritate the bowel; the tissue can also sit on or grow into the bowel, leading to constipation.
Half of those with the condition say it has had a profound impact on their relationships and 51 per cent say it has affected their work, according to data from the World Endometriosis Research Foundation published last year in the journal Human Reproduction.
She has endometriosis, where tissue like that found in the womb lining grows elsewhere in the body
Despite the condition affecting at least one in ten women, it takes, on average, seven years to be diagnosed, according to a 2011 survey by the charity Endometriosis UK.
This is partly because women, especially young women, often delay going to the GP because they think period pain is normal. But many are not diagnosed because they are not sent for the right tests, according to Philip Kaloo, a consultant gynaecologist and spokesman for the Royal College of Obstetricians and Gynaecologists.
‘In many cases GPs and some gynaecologists dismiss symptoms such as pelvic pain,’ he explains. ‘Sometimes they even tell women to go away and have children to “sort it out” because being pregnant gives their bodies a break from a monthly cycle.’
He adds: ‘Younger women and teenage girls with endometriosis are often not taken seriously. ‘GPs can sometimes be reluctant to refer women to a gynaecologist because it costs them money.’
It may be that some GPs lack sympathy, adds Ertan Saridogan, a consultant gynaecologist at University College London and a trustee of Endometriosis UK. However, he says the problem exists largely because endometriosis is difficult to diagnose.
The standard diagnostic tools are physical examinations and ultrasound. But these are not always conclusive, suggests Dr Karen Ballard, a senior lecturer in women’s health at Surrey University.
She has carried out several studies on endometriosis and says one key reason women don’t get diagnosed promptly is that the current tests are not adequate. In a study published in the British Journal of General Practice in 2007, she found that ultrasound only revealed the disease in 10 per cent of cases.
This study also found that a third of women had seen their GP six times or more before being diagnosed and, on average, it took nine years to get a diagnosis.
‘They may be referred to have an ultrasound scan, but this is often not conclusive,’ she explains. The only way really to diagnose it is to carry out a laparoscopy – a keyhole procedure where a tiny telescope is used to look inside the abdomen, adds Mr Kaloo, who works at Gloucestershire Hospitals NHS Foundation Trust.
This normally takes around 15 minutes, under general anaesthetic. The advantage is that if endometriosis is found it can be treated – surgically removed or destroyed using heat – at the time. But this can be expensive; if severe endometriosis is diagnosed, the procedure can take more than two hours and costs about £1,500.
If endometriosis is found it can be treated – surgically removed or destroyed using heat
Mr Kaloo says gynaecologists can also be cautious about doing a laparoscopy; it has a one in 1,000 risk of major complication such as injury to the blood vessels, bowel and bladder.
‘Some doctors will only treat the condition with medication, rather than surgically, so the thought is why put the woman through a laparoscopy? In my view, the best way to treat endometriosis is to get rid of it surgically.’
There is also the question of who performs the procedure, suggests Dr Ballard. ‘The problem is that women can have a laparoscopy done by inexperienced people who are not good at detecting endometriosis,’ she says.
Endometriosis can develop at any point during a woman’s reproductive life – from the first period to the menopause – but is most commonly diagnosed in those aged between 40 and 45.
A number of factors are thought to contribute to its development, including family history and the number of children you have (the fewer the children, the greater the risk – because the risk of endometriosis seems to be related to the number of periods a woman has).
‘The Pill has a similar effect because it reduces ovulation and blood loss,’ says Mr Saridogan. ‘If you delay having children until the end of your reproductive life, you may have already developed endometriosis.’
Manuela Brun was finally diagnosed after she saw a female GP. ‘She immediately said this was not normal. I just cried. For the first time, after all those years, I felt like someone was really listening, that my life might not have to be endless pain,’ says Manuela.
An ultrasound and a laparoscopy revealed extensive scar tissue and Manuela was diagnosed with a severe form of the disease.
She underwent laser surgery to remove the scar tissue and was given a contraceptive coil, which makes periods lighter and therefore reduces symptoms, but this failed to help.
Then, two years ago, she was put on cerazette, a medication containing the hormone progestogen. Also a contraceptive, it reduces heavy periods and in some cases stops them altogether. This has significantly improved her symptoms, as she explains: ‘I have gone from being a ghost of myself to having a life, friends, dating, a sex life, I go to work normally and I don’t have pain. I am so grateful.’
But the concern is that too many other women will still be suffering. As Mr Kaloo says: ‘For such a long time, endometriosis has been poorly managed in primary and secondary care.’
While he believes the situation is starting to improve as patients become more aware of the disease, he advises: ‘If your symptoms are dismissed by a doctor, especially when you are a young teenager, it can lead to other problems like depression and low self-esteem. No one wants to feel ignored, especially when the symptoms are very real.’