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Endometriosis - my painful condition took 20 years to diagnose
CHARLOTTE Barrett had always had painful periods. As a teenager she had to have time off school but was told by her doctor that it was normal.
She tried different pain killers and various contraceptive pills but with time her symptoms became worse.
“I was told I had to come off a pill I was using because I’d been on it too long and everything really flared up in my mid- 30s,” says the 41-year-old from Southampton.
“I developed really bad irritable bowel syndrome symptoms, where I’d bloat out and people on the bus would offer me their seat because I looked about six months pregnant.
“I was in so much pain that I didn’t want to go out and all my relationships suffered. I liked to keep fit but for two weeks a month I couldn’t do any exercise because I was in that much pain.
Sometimes I couldn’t even walk because of it and I put on weight.”
Over this time Charlotte had seen different doctors but none had diagnosed an underlying condition. But fortunately she switched GPs and when she saw her doctor about her back pain she was sent for a scan.
Growths were detected in her uterus which frightened her but she had further investigative surgery which revealed the source of her problems.
“When they told me I had endometriosis I’d never even heard of it,” she says.
But the diagnosis led to her seeing a specialist, which she says has ‘saved’ her.
Although, like many, Charlotte hadn’t heard of endometriosis, it is a common condition the lining of the womb forms outside of it. It can cause heavy, painful periods, lower back pain, tiredness, depression and fertility problems.
It is thought to affect around two million women in the UK.
At the moment there is no cure for endometriosis but symptoms can often be managed through painkillers, hormone medication and surgery to remove patches of tissue.
Looking back, Charlotte believes that the condition was responsible for miscarriages she suffered while trying to have a baby as well as periods of depression.
She had surgery in 2009 which relieved a lot of her symptoms, although many of them have come back.
But the knowledge of what is wrong with her has helped her manage it.
A significant factor is that she has been able to explain her condition to her current employers, where she has worked as a PA for six years.
“It’s been a struggle to last so long at a job,” she explains. “Previously, because of time off because of bad back pain, lethargy and all the symptoms associated with endometriosis, I couldn’t keep jobs for long and was always made redundant.
“Luckily I’ve been able to explain to my work and they’ve been really good.”
Charlotte says that as well as being able to manage her symptoms better, diagnosis has meant that she has been able to get much-needed support from charity Endometriosis UK.
As well as attending group meetings, Charlotte is the administrator for the group’s Facebook page and is organising a charity fundraising event in March.
“I want to raise awareness about endometriosis,” she says.
“It took me around 20 years to get a diagnosis. If I had been diagnosed sooner, maybe I wouldn’t have suffered the depression and other symptoms.
“I want to get the word out there and encourage GPs to listen if their patients have heavy periods.
“Now I can manage my symptoms better, my social life has really improved and I’m doing exercise – I’ve lost almost three stone since the operation.
“I try my best not to let it affect my life. I look forward rather than back.”
Claire Gover with Josh
Six years ago Claire Gover was rushed to casualty with suspected appendicitis. She had emergency surgery to investigate but nothing was found and she was given antibiotics.
She had always had heavy periods but it was when her son Josh was born three years ago that her symptoms, including severe pain and exhaustion, became really severe and started affecting her day-to-day life.
Her GP thought it could be endometriosis and referred her to a gynaecologist but she disagreed and suggested Claire had a coil fitted.
But she was still in such agony that she sometimes found herself unable to get off her sofa.
She was referred to another gynaecologist and sent for laparoscopic surgery – a keyhole investigation of her abdomen to find out if she had endometriosis and remove any deposits found.
Endometriosis was confirmed, with deposits found in her ovaries, sacral nerve and ligaments.
Her doctor also suspected she had it in her uterus, which it cannot be removed from and unfortunately, surgery has made little difference to her symptoms.
She is now on painkillers and believes hormonal treatment will be necessary.
“The pain can be excruciating,” says the 27-year-old from Botley.
“It’s a stabbing pain even in the back of my legs and everything cramping. At its worse, even going to the kitchen for a glass of water is a struggle.”
But Claire considers herself to be fortunate.
“I’m one of the lucky ones,” she says.“ I hold down a job and I have a home life. I do run out of energy very quickly and I have to be careful how often I agree to go out.
“I think I was lucky to be able to have Josh. If we’d waited until even now, I don’t know if it would have been possible.
“If you have an early diagnosis it can mean a better outcome for your treatment,” she adds.
Claire thinks raising awareness about endometriosis is very important and is set to become a GP liaison volunteer for Endometriosis UK, to encourage doctors to consider it as a cause of heavy periods and pains.
“I definitely think there’s a problem with getting it diagnosed because it’s seen as a ‘women’s problem’ and can be quite ‘hush, hush’,” she says.
“It can be embarrassing, especially as the symptoms can include painful sex. And it isn’t necessarily in the front of doctor’s minds as a possible diagnosis.
“I know there’s no cure for it, but knowing about it is a big step towards me being able to deal with it myself.”
- For more information and support, visit endometriosisuk. org or call the helpline: 0808 8082227.
- Sing-along and Stand Up for Endo – a fundraising evening for Endometriosis UK is being held on March 7 at Buon Gusto, Commercial Road, Southampton. The evening will include entertainment from ‘Queen of Camp’ Crystal Candyfloss and comedian Adrienne Coles. For more info email firstname.lastname@example.org
What is endometriosis?
Endometriosis is a common condition in which tissue which behaves like the lining of the womb grows outside it, generally elsewhere in the abdomen.
It is most commonly found on the ovaries, the lining of the pelvis behind the uterus and the top of the vagina.
The cause is not known but it is thought that the lining of the womb does not leave the body during a period and becomes embedded on the organs in the pelvis.
These cells then behave the same as those that line the womb, growing and bleeding with the monthly cycle. As it cannot leave the body, this causes pain, swelling and can cause fertility problems.
There is currently no cure.
Symptoms can be managed with surgery to remove build ups of tissue in certain places, painkillers and hormonal treatment.
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