When young mum Ellie Chandler, 25, started experiencing excruciating back pain, she knew deep down something was wrong.
But when she went to the doctors multiple times in October 2021, Ellie claims she was told her pain was just due to bad posture while working from home.
Sent home to buy a support pillow and take painkillers, her pain only worsened, even when an orthopaedic specialist’s X-ray of her back came back clear.
It wasn’t until her gynaecologist felt a huge mass from inside Ellie’s rectum and vagina that she finally discovered the truth: the mum of twins had a rare tumour at the base of her spine, that had grown so rapidly that it was 14cm wide – the size of a baby’s head.
She now faces months of intense treatment, with monthly injections to shrink the tumour in the hopes of undergoing risky surgery to remove it.
Ellie is now sharing her story to encourage people to take back pain seriously, and to keep pushing for help when you’re dismissed by doctors.
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Ellie, from Philadelphia, Pennsylvania, US, said: ‘It went from what I thought was normal back pain from giving birth, then what I thought was caused by working from home and poor posture, to just excruciating pain.
‘My back pain really started in December 2019 when I gave birth to twins.
‘It never really got better – it got worse – but of course we had the pandemic and I started working from home.
‘I figured I wasn’t set up the best way at home and had bad posture.
‘I let it get pretty bad because life is busy and I had twins. I was working full time and my partner travels for work
‘I had an annual physical with my primary care doctor [around October 2021] and mentioned it.
‘She told me to go ahead and get a special pillow to sit on while I was working and take some Ibuprofen.
‘I did that but it just kept getting worse at a rapid rate.’
After trying out a support cushion for her chair, Ellie claims her condition rapidly deteriorated after a fall at her home, which she believes knocked an area of the tumour.
She claims she was told it was likely a fracture but when an X-ray came back clear, she was given pain medication. A month later, her pain hadn’t improved.
The mum-of-two then went to hospital after fearing she had developed a urinary tract infection, before being told her ‘red flag’ bladder and bowel symptoms were likely IBS.
Ellie said: ‘It became excruciating pain. But when I went to the doctor then, they said “oh, if you had a fall it’s probably a fracture or a bruised tailbone”.
‘They did an X-ray and couldn’t really get a good image. Now, looking back, soft tissue tumours don’t show up on an X-ray.
‘They gave me more pain medication and told me to come back in a couple of weeks. I came back four weeks later and it still hadn’t improved at all.
‘In that time, I started having bowel and bladder symptoms. I had gone the weekend of Thanksgiving to another urgent care as I thought I had a UTI.
‘That all came back negative and they said I might have an overactive bladder.
‘I brought up my bowel and bladder symptoms. They had a chuckle and said it’s probably IBS.’
Later that day, Ellie had an annual pelvic exam, where her gynaecologist discovered the mass.
An ultrasound and CT scan confirmed that the mum had a tumour.
‘The pain was so bad at that point that I couldn’t sleep, I couldn’t sit, I was driving around for work and I was crying in the car some days because it hurt so bad,’ Ellie said.
‘From there, I was admitted into the hospital for about a week where they did a biopsy. It came back as a giant cell tumour, which is not cancerous.
‘Doctors don’t necessarily think it’s going to be a tumour because you’re young and healthy, they think of other things first.’
Ellie hopes to undergo surgery, but this comes at a major risk – she could lose her bowel function.
The mum is now unable to work due to her condition, and still feels frustrated that doctors didn’t spot her tumour earlier.
She said: ‘I really went through, and I’m still going through, the different stages of grief. I was really angry at first and scared.
‘After that, I was really angry that I went to so many different doctors and nobody caught this.
‘I did bring up red flag symptoms. Back pain shouldn’t really be considered normal for young people, but it generally is.
‘Once I brought up neurological symptoms like bowel and bladder issues, they should have been red flags to the orthopaedic doctor that I saw.
‘I’m so glad I went for that check up with my OB-GYN because she was ultimately the one who found it.
‘My OB-GYN is a young female doctor and I don’t know if that had any play into it, if she was more willing to listen to my pain and the seriousness of it all.
‘I was definitely angry realising I’d been to so many doctors and nobody caught it because over that span of weeks, the tumour did grow significantly to the point where I was having intermittent issues with going to the bathroom.
‘Back pain is so normalised, especially with people working from home these days, but it’s really not normal and you should take it seriously if it’s impacting your daily life.
‘Especially young people, don’t put off going to the doctor. Don’t let it get to the point that it’s so bad you’re having issues functioning.
‘Look out for red flag symptoms, so if you’re having other symptoms along with back pain, those could be signs that you have a tumour in your spine.’
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