My periods could make my lungs COLLAPSE – because of rare endometriosis that crushes my chest
AN endometriosis sufferer lives in constant terror that her periods will cause her lungs to collapse.
Harley Walker, 29, has a rare form of the disease which affects her lungs and heart – leaving her in agonising, frightening pain.
She was just 11 when she began to suffer from heavy periods that were so excruciating, she’d pass out.
They also caused her to be sick, have diarrhoea and suffer spotting every day of the month.
At the time, her doctor told her that it was just “part and parcel of being a woman”.
Harley, from Llangollen, Wales, went on the contraceptive pill to settle the symptoms but knew that what she’d experienced wasn’t normal.
In 2017, she took a break from the hormonal contraception and her pelvic and period pain returned with a vengeance.
It took her 16 years before she was properly diagnosed with endometriosis – a condition notorious for its lengthy delays in diagnosis.
The vintage shop owner says that her rare form of endometriosis has left her £20,000 in debt after remortgaging her house to fund a private operation which took seven hours and involved removing the top layer of skin from the inside of her abdomen and organs.
But the op went wrong.
She wrote on her GoFundMe page that due to a laparoscopy finding endometriosis all around her pelvis and bowel, docs decided she needed extensive surgery on those areas.
“It was a horrific operation and recovery. It has left me with life-changing bowel complications and clearly had no effect on what we now know is Thoracic Endometriosis.”
I can’t breathe properly, can’t sleep or even sit back in a chair. The pain is so bad I’ve just wanted to die.
Harley Walker
And now, after two years of frightening chest pain, she’s faced an uphill battle to get GPs to consider that her endometriosis has developed in her lungs and heart.
“It feels like I have an elephant sitting on my chest,” she told the i.
“I can’t breathe properly, can’t sleep or even sit back in a chair. The pain is so bad I’ve just wanted to die.”
She says that she’s been to hospital up to 30 times over the past year to see about her rapidly beating heart.
But Harley claims she hasn’t been taken seriously by hospital staff who have asked her why she keeps returning to A&E.
“There are days I just have to shut up the shop because I just can’t breathe and I’m in too much agony,” she said.
She has now been diagnosed with pericarditis – inflammation of the pericardium, the fluid-filled sac that surrounds the heart.
The condition causes chest pain and a high temperature.
The NHS says that it’s not a very serious issue and that it’s normally caused by a viral infection, but Harley maintains that she’s actually one of the rare cases where endometriosis has spread into the chest cavity and possibly her heart.
Harley told the i that although she lives with chronic chest pain, it gets worse during her period – just like her past pelvic pain.
Symptoms of endometriosis
Endometriosis is where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body.
Each month, these cells react in the same way to those in the womb – building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
That can lead to infertility, fatigue, bowel and bladder problems, as well as really heavy, painful periods.
It affects one in ten women in the UK.
Symptoms include:
- Painful, heavy, or irregular periods
- Pain during or after sex
- Infertility
- Painful bowel movements
- Fatigue
The cause of endometriosis is unknown and there is no definite cure.
According to Endometriosis UK, it takes over seven years on average for women to finally receive a diagnosis.
It’s estimated that up to 50 per cent of infertile women has the condition.
Source: Endometriosis UK
A paper published in January this year was the first of its kind to report on pericardial endometriosis.
It reported the case of a 42-year-old woman who turned up to hospital complaining of chronic chest pain and pelvic endometriosis.
She too had taken oral contraception and had scans which only showed up the pericarditis – despite the fact that her chest pain and pelvic pain were rated as a 9/10.
Harley claims that she’s just been dismissed by medics to “get on with it”.
She’s been to see gynaecologists who know about endometriosis but have no idea about chest issues, while heart specialists don’t know enough about endometriosis.
She is now trying to raise money to fund an operation in America.
“I have recently joined some forums and found lots of women who are experiencing the same thing as me,” she says on her GoFundMe page.
“It has helped me to talk to others and also put me in touch with a centre in America that specialises in endometriosis all over the body, particularly in the thoracic area. I have sent all my medical history and scans over and they have offered me a lifeline.
“The surgeon himself called me from Atlanta after reviewing my case and explained the surgery they will be able to give me. They are going to operate on my chest and cut out all lesions found on the lung, diaphragm and heart sac. I also have to have another abdomen procedure to check the bottom side of my diaphragm and liver which will be done at the same time.”
Although recovery is going to be hard, she says that this op will give her “the best chance of a life without this pain” and prevent it from getting worse by more scar tissue build up.
“I have so much to live for, I have such an amazing family and the most supportive friends I could ask for. This month I am getting married to the love of my life – without him, I don’t know how I would still be fighting.”
She also claims that she may have endometriosis on her eye.
Harley is just one of the thousands of women who struggle to receive adequate support for the chronic condition.
It currently takes an average of seven years to receive a diagnosis and even then, many women aren’t offered help in managing the excruciating pain.
Despite it affecting around 1.5 women in the UK, many women are just having to struggle through crippling pain on a monthly basis.
And experts at Manchester Metropolitan University say that’s because their descriptions of symptoms are routinely dismissed as being “normal” period pain.
We previously reported the story of Suzan Selçuk, who told us that she was “laughed at” by doctors who took 16 years to diagnose her condition which felt like “razor blades scraping inside” her.
Despite explaining how much agony she was in, she said that she was told that she “had IBS, that I was ‘weak’ and had a low pain tolerance, that I needed to take more painkillers, that it was in my head, – but never taken seriously.”
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