A young mum who was told to ‘have a few wines and relax’ when she complained of severe bleeding and constant pain to her doctor later discovered she actually had cervical cancer.
Ashlee Williams-Barnes was only 24 when she visited her GP with heavy bleeding, UTIs and pelvic pain.
The mum-of-two from Jervis Bay, NSW, visited multiple doctors for two years but was dismissed as fit and healthy. At one point she was put on antibiotics for six months when medics thought she had an infection.
Despite her bleeding being so heavy she ‘lived in black clothes’, doctors told her she was ‘too young to have cancer’ with one GP telling her, ‘Maybe you need to have a few wines and relax, it’s all in your head.’
Feeling like she was ‘going crazy’, Ashlee eventually tracked down a doctor who took her seriously, and was diagnosed with cancer at the age of 26.
Ashlee Williams-Barnes was only 24 when she visited her GP with heavy bleeding, UTIs and pelvic pain. Two years later she was diagnosed with cervical cancer
The mum-of-two from Jervis Bay, NSW, visited multiple doctors for two years but was dismissed as fit and healthy, at one point being put on antibiotics for six months as medics thought she had an infection
‘I felt scared, unheard, and alone even though I had my family and friends to lean on,’ Ashlee, now 34, told Daily Mail Australia.
‘By the end of 2014, I didn’t even have the energy for a 50m walk. I was in constant pain, distressed, and held guilt that I could not be the partner, mother, daughter, friend or work colleague that I wanted to be and had always been.
Ashlee’s cervical cancer symptoms
Other symptoms that took over her life included:
- Lack of motivation
- Pelvic pain that got worse over the year
- Sugar cravings
- Unable to use a tampon
- Could not have intercourse and our sex life became non-existent.
- Brain fog
‘We had to knock on doors until somebody listened.’
Ashlee said she felt like her ‘options were running out’ until she found a GP who referred her to a specialist.
‘This was one-and-a-half hours away from my home. She was our miracle.’
Ashlee says the next appointment with the doctor was ‘life-changing’.
‘From the moment we met she believed me and made me a priority, she showed empathy and understanding and I felt safe and understood.’
The doctor also connected her to the team at Chris O’Brien Lifehouse, a cancer treatment centre.
‘She acknowledged that my circumstances, symptoms, and inconclusive pathology result, were beyond her specialty,’ Ashlee said.
‘On the drive home several things were going through my mind, “this is bad, how can this have taken two years for someone to really listen”, on a positive note, “I feel now I am not far from getting answers” – and “oh no, what’s next?”
After meeting the doctor, Ashlee underwent a biopsy to have a cone-shaped piece of tissue removed from her cervix, but three days later was rushed to hospital after collapsing at home and losing large amounts of blood.
Feeling like she was ‘going crazy’, Ashlee, pictured on her wedding day, eventually tracked down a doctor who took her seriously, and was soon diagnosed with cancer
Doctors told her she needed further surgery to stop bleeding. When she woke up, she was told she had cancer
Doctors told her she needed further surgery to stop the bleeding. When she woke up, Ashlee was told she had cancer.
‘Little did I know from this point that Sydney was to become my home for the next four months,’ she said.
Statements Ashlee was told by doctors ‘that she still carries with her’
- ‘You have an infection, you have an infection, you have an infection, here are some antibiotics. That went on for nearly 6 months
- ‘Oh, your cervix is tilted, that could be causing some of your pain’
- ‘You don’t need a thin prep, don’t be ridiculous, (after bleeding during a pap smear, with the speculum still in her).’
- ‘Stop being a Google doctor.’
- ‘Even if it is cervical cancer, it is slow growing.’
- ‘You have High-Grade squamous intra jargon (HSIL). Let’s just monitor you, come back for another pap in 12 months’ time.’
- ‘You are too young to have cancer.’
- ‘You are very tense, is your new partner treating you all alright.’
- ‘Just breathe.’
- ‘Your cervix is disformed. (She replied ‘yeah that would happen after having children’.( ‘Oh, you’re too young to have children.’ (Her response was ‘ you were my obstetrician.’)
- ‘No need to take a sample during your colposcopy. Here are some vaginal antibiotics. Come back to me in 12 months.’
- ‘Maybe you need to have a few wines and relax, it’s all in your head.’
‘Initially, I had a cone biopsy. I returned home after this day procedure, but I did not recover from the surgery.
‘Three days later I found myself critically ill losing an enormous amount of blood.
‘After sitting in the waiting room of my local hospital for 8 hours, nearly losing consciousness, filling a maternity pad with excessive amounts of blood within an hour… I reached out to my specialist in Sydney.
‘He called my mobile, and asked me to put any medical staff on the phone.
‘Within minutes I was rushed in and given fluids and then I was rushed back to hospital and was placed in the Intensive Care Unit.
‘The next day my specialist advised that I would be having further surgery to stop the bleeding and he requested I call my parents to come up immediately as he wanted to explain what was happening to me.
‘When you have your partner beside you and the doctor wants your parents there too – you know it’s not going to be great news however I kept the attitude to just take it as it comes.
‘What was estimated to be a 10 minute operation to stop the bleeding turned into around four hours of surgery.’
Ashlee said that when she woke up she had her parents, aunty and partner by her side.
‘That was the day I heard those exact words “you have cancer”.
‘My thoughts immediately went to [husband] Luke, my parents, and my family. I could not imagine how they must have felt to hear this.’
Ashlee’s specialist told her she had an aggressive 5.8cm tumour attached to her cervical wall.
It had already spread to her lymph nodes and was deemed inoperable.
The mum-of-two was told she wasn’t able to have more children, and wouldn’t make it to Christmas, 2015.
Ashlee said she knew her family was terrified she was going to die and felt helpless.
‘I watched on as my family tried to hold it together. I knew they felt helpless and they were all scared that I would lose my fight. I had two weeks to go home, get my affairs in order and was recommended to get family photos which we did.
Ashlee, pictured on her wedding day, was told she had an aggressive 5.8cm tumour attached to her cervical wall
‘My dad was on the floor with the news in tremendous pain and my mum was in tears and shock also.
‘Luke, my mum, dad, and aunty all looked at me with horrified eyes and worry.
‘I went for my PET scan that day and the results were unexpectedly worse.
Ashlee’s cervical cancer symptoms that were dismissed by experts
Ashlee had her first pap smear aged 24 in 2013. She discovered she had abnormal cells and was advised to return to the GP in 12 months.
Ashlee, who is a proud Wadi Wadi, Dharawal and Wandi Wandian woman of the Yuin Nation, from the South Coast of NSW, said that she felt uneasy visiting a male doctor.
‘Even though I birthed my children naturally and had strangers previewing my vulva and everything else, I still felt uncomfortable and not culturally safe to have a male doctor, who predominantly made up the availability of health care practitioners in the area in which I live, carry out a pap smear.
‘Going to the local doctors for anything would always be a lucky dip and it was never continuity of care from the same GP either.
‘Not one of the GPs I consulted asked if I was up-to-date with getting a pap smear and if I wished for a female nurse to carry out the procedure.
‘This is a problem,’ she told Daily Mail Australia.
Shortly after she began to suffer heavy bleeding between periods.
Her symptoms got worse and worse meaning she could never leave the house without a sanitary pad, and her sex life with her husband became ‘non-existent’.
‘I left the house knowing that if I was going to bleed out that day, the pad would give me a couple of seconds to find a place to hide or a toilet before it would flood my clothing,’ she said.
‘My shoes would be filled with blood and the floor around me – it was seriously horrifying.’
‘Other symptoms that took over my life included lethargy, lack of motivation, depression, pelvic pain and weird sugar cravings.’
Throughout 2013 I presented to the doctors with UTIs and other various symptoms looking back now they were slightly alarming. These included random bleeding, pain, and discomfort, along with several infections.
2014 came around. I still wasn’t myself. I was a very fit and healthy person. I played sports or went to the gym most days of the week and I was right into naturopathy, and alternative medicines. But This is the year that had me questioning if it was me or the system.
My symptoms progressively got worse. 2014 saw me suffer mentally and physically. I experienced bleeding that started intermittently and progressed to a point where I had to wear menstrual pads every day of my life to ensure I left the house with a minuscule of confidence. I left the house knowing that if I was going to bleed out that day the pad would give me a couple of seconds to find a place to hide or a toilet before it would flood my clothing. My shoes would be filled with blood and the floor around me. Seriously horrifying.
I lived in black clothes and on painkillers. This is not normal.
‘I didn’t have time to save my eggs which knocked the wind out of me as all I wanted was for Luke and me to have a child together and for him to experience all the firsts’ of being a new parent, as he didn’t have biological children of his own.
‘I thought about life for my children, Zahli and Kyden, without a mum and what the future would look like for them.
‘I was angry that it took so long for a diagnosis and I wanted the system to be better. I was scared that I wasn’t going to be strong enough to survive and let down those closest to me.’
Ashlee was then offered a medical trial that offered her some hope.
She received radiotherapy every day along with chemotherapy once a week for three months.
This was followed by rounds of brachytherapy, a type of internal radiotherapy.
‘Treatment was brutal and the radiation daily was the hardest thing for me,’ she said.
‘This was a traumatising time for both of my children.
‘They didn’t know what was going on and we made efforts to show them my treatment – they watched from outside the room with the nurses and they spoke to me during my procedure.
‘I pretended the best I could to put on a great face but I could only sit with them an hour at a time as I was just too unwell.
‘My brother gave up his room in his one-bedroom apartment for months and slept on the lounge while working fulltime.’
Ashlee said her husband gave up his job and nearly lost his house as he took care of her physical and emotional needs.
‘He dressed me, showered me, fed me, took control of my medicines, picked me up when I was low, and drove me to treatment everyday.
‘He was away from all of his family and friends and he never left my side.
‘The community rallied behind us and truly fought the battle with me from the sidelines. I feel so lucky.’
Ashlee said she coped with the traumatic times by telling herself to ‘just get through the next five minutes’.
‘It hurt to move and I struggled to lift my head off my pillow. I shed quite a few tears mainly when I was vomiting or coming down off the steroids. But Luke would pick me up and he would remind me that I’d gotten through every bad day so far so I could make it through this one,’ she said.
‘And that’s what I did. I took it five minutes at a time, a day at a time, a week at a time, a treatment at a time. I kept my positivity that I could beat the odds and I never gave up hope. My specialists and I had done everything possible to provide a good outcome.’
One week before Christmas, 2015, Ashlee was told she was cancer-free while shopping in Kmart.
This meant she could celebrate Christmas with her children.
Seven years on, she is now able to live her ‘new normal’ – which includes going through an early menopause.
‘My organs are heavily affected and damaged by my treatment… They don’t operate normally and I undergo recurrent infections and annual hospital visits,’ she said.
‘I still bleed and have pain. I’m 34, menopausal, and no one really believes me when I say I am having a hot flush.’
Seven years on, she is now able to live her ‘new normal’ – which includes going through an early menopause
‘I have to take daily antibiotics, wear hormone patches and take two bladder pills daily at this point.
‘But I am here today and I am so grateful for medical science, the team that helped me build hope and held my hand through the darkest times of my life and all those that fought this with me on the sidelines.
‘I am not here to name and shame. For me, with my story, I wished to highlight some really important points in my journey.
‘I know I am not the only person in our nation who has had an experience like mine.
‘Statistics support my experience is not isolated and that First Nation women are seven times more likely to receive suboptimal care and late detection of cervical cancer. This is a current problem for our country.
Doctors advised that she takes family pictures after she was diagnosed (pictured)
Ashlee, pictured with her family, was told she ‘wouldn’t make it to Christmas’
‘Women still hold fear and are shame to talk about gynaecological health. This needs to not only be addressed in our school system but also in our communities.
She also urged other Australians with health issues to seek a ‘second, third or fourth’ opinion if they’re not happy as it could ‘save their life’.
‘Many times I have had to request and fight for scans and tests including thin prep, ultrasound, and other scans.
‘This was life-saving, so don’t be afraid to be strong on what you need and request it from the doctor.’
Ashlee now works as a kindergarten teacher and coaches her daughter’s rugby team in her spare time.
‘Let’s stamp out the shame in talking about gynaecological health. The more we talk the more we normalise our bodies and the less shame we have in seeking advise or help from professionals. We need to get educated.
‘We know our bodies best and it is so important that if answers from general practitioners are not sitting right with your gut instinct then please seek, a second, third, and fourth opinion if necessary because if I hadn’t kept fighting for answers and speaking up, I would not be here today.’
WHAT IS CERVICAL CANCER?
Cervical cancer affects the lining of the lower part of womb.
The most common symptom is unusual bleeding, such as between periods, during sex or after the menopause, but other signs can include:
- Pain during sex
- Vaginal discharge that smells
- Pain in the pelvis
Causes can include:
- Age – more than half of sufferers are under 45
- HPV infection – which affects most people at some point in their lives
- Smoking – responsible for 21 per cent of cases
- Contraceptive pill – linked to 10 per cent of cases
- Having children
- Family history of cervical or other types of cancer, like vagina
Source: Cancer Research UK