23rd September 2021 Ruth O’Mahony
Like most people of her generation, 46-year-old Ruth O’Mahony became aware of cervical cancer when English personality Jade Goody was diagnosed with the disease. “I was a fan of Big Brother and I remember when she died in 2009. It resonated. At this stage I had two children – the youngest was nine. That story frightened me a lot, and I had it in mind I should have gone for screening at some point,” says Ruth.
In the summer of 2009, with the National Cervical Cancer Screening programme CervicalCheck still in its infancy, Ruth had her first screening test. Like many people too, Ruth can’t really remember if she was invited to attend, or if she was signed up by her GP, or whether she knew much about the cervical screening process back then. But she went along, put her trust in her practice nurse, and had the screening test.
“The nurse phoned me to say they weren’t happy with the results of the test. I had pre-cancerous cells. She was reassuring on the phone but said I did need to go to the colposcopy clinic in Cork. This was arranged for me and a week or two later I had an appointment in St Finbarr’s. “I met the consultant and he was very good at explaining what was going on.”
About six in every ten people who go on to colposcopy after cervical screening will have abnormal cells detected in their cervix. These abnormal cells are called ‘cervical intra-epithelial neoplasia’ or CIN. CIN is not cancer, but there is a risk it could turn into cancer if left untreated. Ruth’s consultant told her it was likely she had CIN3 – which meant there was a high chance the cells would become cancerous, and treatment to remove them was recommended.
“My consultant said it had to be dealt with as quickly as possible. He explained that if I had let it go for a number of years, it was highly likely the abnormal cells would turn into cancer. I felt I was very, very lucky. If I had continued to do nothing, and not go for screening, I would have been in trouble. I would have been dealing with cervical cancer and worrying about my children… I was very relieved I had gone for screening.”
The biopsy confirmed that Ruth had CIN3, and she had a LLETZ procedure to remove the cells. “At my follow-up six month screen I wasn’t given the all-clear. But by Sept 2010 my result was clear and I have been going for my follow-up screens since.”
Ruth is a member of LINC – the lesbian and bisexual women advocacy group based in Cork. The group has been involved in the creation of a new report from the National Screening Service entitled LGBT+ Cervical Screening Study. This study examines the experiences of lesbian and bisexual women, trans men, non-binary, and intersex people in cervical screening in Ireland. Approximately 450 people who identify as LGBT+ took part in this study, between October 2020 and March 2021.
The study found that while the majority have said they had positive experiences of cervical screening, only about two thirds (or 66%) of people said they attended cervical screening regularly. This compares to 80% attendance by the general population.
The main barriers to attending screening were found to be: assumptions made by healthcare professionals regarding the eligibility of the person for screening; the person being asked heterosexual questions by healthcare professionals which did not accurately reflect their gender identity, and fear of the test procedure itself. Over 62% of those surveyed who attend do not state their gender/sexual identity when attending for screening.
International evidence shows that lesbian and bisexual women and gender minorities with a cervix have significantly lower rates of uptake of HPV and cervical screening. Ruth tells her experience of cervical screening to friends and people who use LINC’s services, so they know all about their own options for cervical screening. She emphasises the relevance of cervical screening to all women and people with a cervix.
“There seems to be quite a number of lesbian and bisexual women who think they don’t need to go for screening because they are not having sex with men. And just like women in the community as a whole, many also don’t like the invasiveness of the procedure,” Ruth says. “I do describe it as uncomfortable – but that it’s only for a few seconds. I have found it difficult to convince even close friends – I have one friend who has never been for screening – but I do tell my story to people… what I could have been dealing with if I hadn’t gone for screening.”
Today, Ruth says there is a greater focus in the LGBT community on sexual health in general, than when she began her cervical screening journey in 2009. She says a positive experience with your GP can really help people focus on being more aware of what’s going on with their own bodies: “My GP would have known my sexual orientation, and I do remember that the question was asked, ‘are you sexually active?’, but it wasn’t gender-specific. I didn’t come across anyone from practice nurses right up to my consultant, where I felt there was discrimination.”
Another thing that helps, she says, is visibility. “If you can see yourself represented in the information being given out about female health you’ll be more likely to consider it’s for you,” Ruth says.