A SHOP KEEPER who fears that her lungs could collapse at any moment after receiving the wrong operation wants to travel to the United States to receive “lifeline” treatment.

Harley Walker, 29, from Denbigh, says she feels like there is “an elephant on my chest” and struggles to breathe due to the swelling of her jugular vein.

She has experienced painful contractions since she was 11, making her too ill to attend lessons at Denbigh High School because she would vomit and pass out.

Having been told by a list of doctors that she was experiencing menstrual pain, it was not until Harley, who owns Harley’s Vintage Clothing in Llangollen, researched at home into her symptoms that she realised she had thoracic endometriosis, a rare condition which causes endometrial cells to appear in the chest cavity.

About one in 10 women suffer from some form of endometriosis, however it takes on average nine years to be diagnosed in Wales, with no specialist treatment in the north.

Harley said that she had no choice but to seek a private doctor due to the lack of knowledge she found in the NHS.

She said: “Since a young age, I had always suspected that I had something wrong relating to my periods, such as endometriosis, because the severe chest pain would occur around my time of the month. But it was not until 2017, when I was hospitalised with swelling of the sac around the heart at that time, that I researched the link myself and found all of my symptoms were a textbook description of thoracic endometriosis.

“It still feels like I have an elephant sitting on my chest when I lie down, I can’t breathe properly, sit up or sleep.”

Desperately in need of treatment, Harley found the private doctor who had experience treating endometriosis, however he was adamant that it was referred pain from her pelvis, where endometriosis most often appears.

“I had no other choice or options due to the severity of debilitating pain,” she said. “I had to remortgage our house for £20,000 and have a massive seven-hour operation to remove the top layer of skin from inside my abdomen and organs.

“It was a horrific operation and recovery which had little effect.”

Harley said she was left with “frightening” pain in her chest and life-changing bowel complications. Her lungs have nearly collapsed on numerous occasions, leading to bouts of unconsciousness. She continues to be admitted to hospital to manage lesions on her lung, diaphragm and heart.

She now attends Ysbyty Abergele Stanley Eye Unit because she says the condition has spread to her eye, affecting her vision - which is extremely rare and there are only a few documented cases in the world.

Despite the setbacks, Harley remains hopeful because she has “so much to live for”. She has launched a fundraising campaign to raise £40,000 for treatment in Atlanta, which would cut out the lesions and check for further scar tissue under her liver.

She said: “I have recently joined some online forums and found lots of women who are experiencing the same thing as me. They put me in touch with a centre in America which specialises in endometriosis all over the body, particularly in the thoracic area. I have sent all my medical history and scans and they have offered me a lifeline.

“While I feel so horrendously unfortunate in some aspects of my life, I’m so lucky in others. I have so much to live for with amazing family and supportive friends.”

Harley added: “I hope that in the near future there will be better treatment for endometriosis sufferers and that one day I am well enough to help them.”

To donate to the fundraising effort,search ‘Harley Walker Operation America’ on Facebook or www.gofundme.com