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

February 2, 2014 12:57 pm Comments Off on 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 Views: 7404

Manuela Brun suffered debilitating pain for most days every month

 

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 I became  depressed, withdrawn, unstable and had no social life.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

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 condition can cause pain-related fatigue, and can lead to painful sex and infertility. Endometriosis can also cause bowel problems’

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

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.’

 

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