A mother has said her contraceptive coil saved her life after a large 13cm tumour pressing against it caused a stabbing pain that led to an ovarian cancer diagnosis. Caroline Bailey, 54, a former childminder from north Wales, was diagnosed with stage three ovarian cancer in June 2023, shortly after her daughter had received the all clear for thyroid cancer.
Bailey said she experienced severe pain, to the point where she had to "crawl" into the GP surgery, but believed it was purely related to the contraceptive coil. Reading statistics that "not many survive five years" with stage three ovarian cancer, she thought she might only have a couple of years left to live, which was "incredibly scary".
Pain led to diagnosis
After undergoing chemotherapy and surgery at The Christie NHS Foundation Trust, Bailey now has no evidence of disease and is making sure she "lives for now". "I absolutely think that the coil saved my life, which is mad," she told PA Real Life. "I was going to the doctor, saying, 'This coil is stabbing me', and I just hate how long it took for me to be taken seriously. I wish it was easier for women to get diagnosed."
Bailey said she was diagnosed with endometriosis in her mid-20s and had previously been diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), the most common type of EDS, a group of rare inherited conditions affecting connective tissue. She said there is "no history of ovarian cancer in the family whatsoever", so when she started experiencing severe abdominal pain in March 2023, she believed it was related to the coil.
"I started to have the worst stomach pains – like a stabbing pain in the middle of my abdomen," she said. "So, I kept going back into the doctors and said, 'I think the coil needs to come out'."
Two-week pathway
Bailey was referred to a sexual health clinic as there were no appointments available, but staff there could not remove the coil. The pain worsened over the following weeks, and in May she "crawled" into the GP surgery. "I crawled into the doctors on my hands and knees... and I said, 'I need to get this coil out'. I wanted to rip it out myself, but you can't. I thought it was killing me," she said.
She was given a CA125 blood test form, which checks the level of the CA125 protein in the blood and can support a diagnosis of ovarian cancer. She was told to take the form to her local A&E department, but on the drive home from the GP surgery she thought she was going to "pass out with the pain". One of her daughter's friends drove her to A&E instead, but after her bloods were taken, she was told: "You can go home, your bloods are fine."
After following up with her GP surgery, she received another phone call saying her CA125 result was 72 U/ml and, although ovarian cancer was not confirmed, she was put on a "two-week pathway". According to the charity Ovarian Cancer Action, women over 40 should be referred for further investigations if their CA125 result is over the original 35 U/ml threshold.
Surgery and recovery
On June 9, 2023, Bailey was informed doctors had found a 13cm tumour pressing on the coil, and she had ovarian cancer. A biopsy confirmed it was stage three and had spread to the omentum – a large piece of fatty tissue near the womb and ovaries. "I couldn't believe the size of it," she said. "I actually thought, 'I won't live for another two years'."
She started chemotherapy soon after and was told she would lose all her hair within days – by this point, her tumour had increased to 16cm. After four rounds of treatment at The Christie in Manchester, her tumour decreased to 8cm, and she was prescribed steroids. She experienced severe side effects, including constipation which felt like "labour pains for six days".
On October 26, 2023, she underwent a total hysterectomy, where the womb and cervix are removed, and had her omentum and appendix removed during a six-hour operation. "When I came round, there were machines everywhere... and the scar was crazy," she said.
Living for now
The surgery means Bailey now has no evidence of disease – often referred to as NED – but she was told ovarian cancer can be "unpredictable" with a high reoccurrence rate. While pleased to hear she has NED, she said it is also bittersweet as she has since lost friends to ovarian cancer. "We've got success stories and we've got the horror stories and the sad stories," she said. "But there's one lady who's stage four... and she's still alive four years on. She's my inspiration."
One month after her surgery, Bailey's grandson Roman was born, and she underwent two further rounds of chemotherapy in January 2024, along with follow-up CT scans. Testing on her tumour revealed she had both the BRCA1 and RAD51D gene mutations, increasing her risk of breast and ovarian cancer. She is now having consultations to have a double mastectomy to remove both breasts, along with reconstruction surgery and implants, as part of a trial, and her family members are being genetically tested.
"I'm the first person in my family to be diagnosed with ovarian cancer," she said. "But the best thing about this, about having ovarian cancer, is my girls know what they're dealing with and they can have preventative surgery. My diagnosis makes me live for now... and what I know now is, tomorrow is definitely not guaranteed."
Bailey has moved homes several times during her cancer treatment, gone through a divorce and lost her job, even living out of her car for periods of time, and said financials have been her "biggest worry". However, she has completed several goals on her "tick list" post-treatment, including travelling to Italy and moving to a cottage in Wales with a sea view and a bath. She now wants to encourage other women to get any unusual symptoms checked and to advocate for themselves. "I've definitely had to change my life because I had cancer," she said. "My motto is: 'Be healthy, be happy, be kind'. I can't believe I'm still here."
