Endometriosis, the life-wrecker doctors dismiss as period pain

Endometriosis, the life-wrecker doctors dismiss as period pain
By Caitlin Davies – dailymail.co.uk
Last updated at 11:29 PM on 15th February 2010

Sometimes the pain was so bad Ruth Forwood, then aged just 12, would nearly pass out.

‘It felt like someone was stabbing me inside,’ she recalls. When she was 13, she went to her (female) GP and was told this pain was ‘part of being a woman’ and to learn to ‘get on with it’.

‘At times I was unable to concentrate or function, and I often missed school,’ Ruth says. Over the next ten years she took painkillers, used heat-patches and hot water bottles and did breathing exercises in order to try to cope.

Then, just over a year ago, Ruth, now 23, was looking up her symptoms on the internet and up popped the word ‘endometriosis’.

The condition is caused when cells like the ones found in the lining of the womb grow elsewhere in the body, most commonly inside the pelvis and around the ovaries. It’s not known why this happens.

During the monthly cycle, hormones stimulate these cells, causing them to grow, break down and bleed. Depending on where the cells are, this can lead to heavy and agonising periods.

If the rogue cells have no way of leaving the body, this can trigger pain, inflammation and the formation of scar tissue and cysts.

In some cases, the affected organs, such as the ovaries and the nearby bowel, stick together, causing chronic pain and bowel symptoms. Women can suffer bladder problems, and sex can be uncomfortable too. Endometriosis can also cause infertility.

An estimated two million women and girls in Britain suffer from the condition, but a huge number – nearly 70 per cent of these women – are misdiagnosed, according to the National Endometriosis Society. They’re often told they have irritable bowel syndrome, or ‘psychological pain’, suggesting it’s all in the mind.

It takes, on average, eight years from first seeing a GP to getting a proper diagnosis, says the charity. And in the meantime, for many women, life simply falls apart.

‘I felt a sickening dread when I read about endometriosis as all my symptoms fell into place,’ says Ruth, a university student from Uxbridge, Middlesex. ‘Right then I just knew I had it.’

She had only vaguely heard of the condition before, and could hardly fathom that her years of problems had implications for her fertility.

She’d planned to become a teacher, then eventually start a family but ‘suddenly my future seemed in jeopardy’. Ruth went to her GP, but once again she was told period pain was ‘normal’ and that she was ‘too young’ to have endometriosis, which is still regarded as a disease affecting women in their 30s and 40s.

But she was insistent, so her GP referred her to a gynaecologist two months later.

‘I didn’t want to wait that long,so I decided to see a consultant privately,’ says Ruth.
He suggested she had a ‘hormone imbalance’, and after an internal scan, which was clear, said he was 99per cent certain she didn’t have endometriosis. She left in tears.

She then saw the NHS consultant who told her to come back if she was ‘in constant agony’ after six months.

‘I was so fed up that my parents paid for a private appointment with an endometriosis specialist, Simon Butler-Manuel, at the Guildford Nuffield Hospital in Surrey.

‘He said it was not the first time he’d seen someone in my situation or who had been fobbed off with IBS or being too young.’

A laparoscopy – where a tiny camera is passed into the pelvis – confirmed she did have endometriosis.

This is the only way to make a definite diagnosis of the condition, says the Royal College of Obstetricians and Gynaecologists (the technique can also be used to remove or destroy the rogue cells – there is no other treatment).

However lots of women are put off having a laparoscopy by their GP or consultants, according to Philip Kaloo, a spokesman for the Royal College.

‘They are wary that the procedure might not find any endometriosis. But I see that as reassuring for the woman to know, and if it is endometriosis then it makes sense to treat it early on.’

Mr Kaloo says late diagnosis is partly due to the fact that symptoms such as period pain or pain during intercourse are relatively common. ‘Women are told it’s normal by their friends, so they think, what’s the point in pursuing it?’

He says research shows endometriosis can be effectively treated surgically in up to 60 per cent of patients, with a significant reduction in pain, even after five years. And because endometriosis can affect fertility, it’s a good idea to get it treated, says Chris Mann, a laparoscopic surgeon at the Royal Wolverhampton Hospitals NHS Trust.

However, surgery is not a cure – endometriosis can keep growing and in many women it will come back. But it will improve a woman’s chance of conceiving, giving her a window of time before this happens.

When Ruth underwent surgery – which cost her nearly £4,000 – she was found to have ‘extensive endometriosis’ throughout her pelvis, as well as two cysts filled with old blood. These were removed and the endometriosis lasered away.

‘I’m gutted that I had to pay so much, but I can hopefully keep it from growing back by being on the Pill,’ she says. Contraception can help by reducing or stopping menstruation, keeping the condition under control.

‘I’ve been told my Fallopian tubes and ovaries are healthy, but endometriosis might still affect my fertility as it can release a chemical which kills sperm.’

Mr Kaloo advises anyone who suspects they have endometriosis to ask their GP to be referred for a laparoscopy, and to see an endometriosis specialist.

But this is easier said than done, as Anya Reid knows all too well. In June 2005, she should have been celebrating her 33rd birthday. Instead she was in hospital with severe constipation, having not been to the toilet for three weeks.

Anya had already suffered two years of pain and bloating, which her doctor had told her was IBS and she would have to learn to live with it.

She had taken laxatives and changed her diet, eliminating wheat, then sugar, yeast, caffeine and dairy, all thought to aggravate IBS symptoms. But this didn’t help. Then her periods became heavier, lasting two-and-a-half weeks. Sex became unbearably painful.

‘I knew this wasn’t right. I didn’t think it was my bowels that were the problem.’
up in hospital was the turning point. Despite the severe pain, she simply had her heartbeat checked and was sent home.

‘I went back to my doctor’s and completely lost my temper. The pain was affecting my relationship, my work as a photographer, and my sanity. If it was IBS, then why didn’t anything help?’

Anya had a colonoscopy to see if any obstruction might be causing the constipation, but this was clear.

Still the pain continued. Then, just like Ruth, early last year she was on the internet when she stumbled across an endometriosis website. ‘It was like a light bulb switched on. All the symptoms I’d been suffering from for nearly six years were there in front of me.’

After seeing her GP, who diagnosed an ‘enlarged’ uterus, and two gynaecologists, who diagnosed IBS, a radiographer spotted a cyst typical of the condition and she was referred to a third consultant. She was finally diagnosed with endometriosis in January.

Chris Mann’s patients have, on average, already seen three consultants before he diagnoses them with endometriosis, he says. ‘Lives are being blighted. How can women be left to suffer pain for years?’

It is worse for Anya, who’s now been told she will be unable to have children. ‘This makes me very sad, as I would have liked to have a child,’ she says.

She was planning to marry in April, but has had to postpone it as she is not fit enough to enjoy the day and gets tired quickly.

‘I’m angry that I’ve had so many years of misdiagnosis by many different doctors. I’m pleased that I was right about endometriosis and it not being just IBS, but that’s not much consolation really.’