“Nobody knows a woman’s body better than she knows it herself, and if there is something wrong, you have to fight,” says Claire Thompson.
The 38-year-old from Conwy, Wales began experiencing bleeding and bloating in February 2013, soon after the birth of her daughter. She could no longer control her body temperature and changes in mood were impacting her day-to-day life. But the doctors she saw repeatedly diagnosed her with post-natal depression and said her body was simply “changing” after becoming a mother.
It took until 2016 for Claire to be diagnosed with ovarian cancer. By this point her symptoms were debilitating. Her bleeding could no longer be managed with sanitary towels so she would wear two incontinence pads at once to work, changing them hourly. She would sit on a plastic bag in case any blood leaked through to her chair and took three changes of clothes to the office each day.
“No matter how many times I went back they kept saying ‘you’ve just had a baby, your body has changed.’” she tells HuffPost UK. “The amount of times I got told it was ‘women’s problems’ or that I was ‘depressed’ was ridiculous.”
Eleven women die each day in the UK from ovarian cancer, making it more deadly than all the other gynaecological cancers (including cervical, womb, vaginal and vulval) combined. Although the disease is most common in women over the age of 50, women much younger are also being diagnosed – that is, when their symptoms are picked up rather than dismissed as less serious.
HuffPost UK spoke to three women in their thirties who’ve had ovarian cancer –Claire Thompson, Ali Coates and Lauren Ridgard – to coincide with the launch of Target Ovarian Cancer’s TAKE OVAR campaign, which is calling for more awareness and investment in ovarian cancer research.
Each of the women tell us they’d struggled to get GPs to take their problems seriously. Claire and Ali were dismissed as having “women’s problems”, while both Ali and Lauren were told they were “too young” to have the disease.
After more than two years of GP and A&E visits about her increasingly heavy bleeding, Claire was eventually referred for tests in July 2015, but had to wait until October of that year for the appointment. At the hospital, doctors witnessed the bleeding first-hand and then referred her for scans. “[The bleeding] was like I was weeing constantly by then, it just never, ever stopped,” she recalls. “My skin had gone a weird green-grey colour.”
Scans revealed one big mass and several smaller ones around her ovaries, which doctors removed, along with one of her ovaries, and tested. Only then, in 2016, was Claire given the devastating news that she had ovarian cancer, and would require a full hysterectomy.
“All I could think was: ‘Am I going to die? How do I prepare for my daughter?’” she says. “You hear the word ‘cancer’ and no matter how many steps forward we’ve made with science, you still fear it in terms of death.”
Like Claire, Ali Coates, 38, from Gloucestershire, had also been back and forth to her GP before she was finally referred to a specialist and diagnosed with ovarian cancer in December 2016.
She’d always suffered with bad period pains, but when she developed a severe pain in her side she knew it was something else. “I went to to my GP and they said they thought it was either IBS or indigestion, but I kept saying that it was really painful,” she tells HuffPost UK. “One doctor, who was a locum, said: ‘This is just something that happens to women as they get older.’”
Her symptoms increased to the point where she sometimes found it difficult to move or stand up, and was forced to take time off from work. Still, Ali was told she was too young for it to be ovarian cancer. Eventually, her husband accompanied her to the doctor’s and refused to leave until they had a referral.
Ali’s consultant initially diagnosed her with endometriosis and recommended she have a hysterectomy. It was only during this operation, when a mass of tissue was taken for further tests, that doctors realised it was ovarian cancer.
Hearing the news while waking up on a lot of pain medication was “surreal”. Ali was informed she’d had a cancerous mass removed the size of a “small melon” and would require six sessions of chemotherapy. “If it had been caught even three or four months later, my whole outlook would have been very different.”
Lauren Ridgard, 32, from Manchester, also feels lucky to be in remission after she was diagnosed with ovarian cancer in 2017. “I knew for a while that something wasn’t quite right. I had symptoms of bloating, abdominal pain and heavy bleeding. My GP was very good and immediately sent me for an ultrasound,” she explains.
But there was a mix up with her referral, meaning she didn’t receive a follow-up appointment and was never given the results of the scan. After waiting for six months and then experiencing a very heavy period, she went back to her GP’s surgery and was referred for a second scan, with several more months to wait. In the meantime, she visited her GP yet again about her worsening symptoms.
“He still didn’t seem massively concerned,” she says. ”I got the impression it was ‘you’re just too young to have ovarian cancer’. I did really have to persist with my GPs to get them to understand how I was feeling. I was made to feel a bit silly.”
Lauren’s grandmother died from ovarian cancer and so she asked her GP for the CA125 blood test, which can detect the disease. It came back positive and the treatment process sped up from there. She, too, had a hysterectomy and chemotherapy. “It was devastating,” she says, “especially because me and my partner were planning on having another baby. We have one little girl who’s five now, but the plans were to have more children and obviously that’s not possible anymore. We still deal with that on a daily basis.”
She also finds the ‘Coronation Street’ storyline about Sinead Tinker’s cervical cancer a bit close to home, she says: “To watch those things on television is very hard and I to have to turn over, but at least we’re raising awareness.”
But increasing understanding about ovarian cancer is just one part of the TAKE OVAR campaign. Target Ovarian Cancer is also calling on the government to dedicate more funding towards ovarian cancer research.
More than 7,000 women are diagnosed with ovarian cancer in the UK every year, yet less than half of women with the disease will survive for five years. Key treatments have not changed since the 1990s, the charity claims, but funding has been cut in that period. Ovarian cancer’s share of funding for clinical studies by The National Cancer Research Institute has dropped by half, from 3.2 per cent in 2003/04 to 1.6 per cent of all cancer research in 2016/17.
Which is why all three women have got involved with the TAKE OVAR campaign. “I had never even heard of ovarian cancer, and I think that’s wrong,” Ali says, while Lauren and Claire urge women to know their own bodies and feel comfortable requesting tests when something doesn’t feel right.
“Unfortunately, women are going to have to fight for their right to be heard,” says Claire. “But I want them to know they are not on their own. There are so many women out there who will fight with them.”
Symptoms of ovarian cancer are usually frequent and persistent and include:
• Persistent bloating - not bloating that comes and goes
• Feeling full quickly and/or loss of appetite
• Pelvic or abdominal pain (that’s your tummy and below)
• Urinary symptoms (needing to wee more urgently or more often than usual)
• Changes in bowel habit (eg diarrhoea or constipation)
• Extreme fatigue (feeling very tired)
• Unexplained weight loss
• Any bleeding after the menopause should always be investigated by a GP.