Earlier this year we wrote a post documenting what to expect during an average cervical screening appointment in the UK. There’s been a declining number of women booking and attending their smear tests in recent years, and part of this is being put down to a fear of the unknown and of previous bad experiences.
But what happens if you have your cervical screening and the results do come back abnormal? What happens next? We spoke to one of our readers, 31-year-old Louisa* about her experience. Here she shares her diary…
I’d been invited for a routine smear test and had been for a handful before so knew what to expect. A week or so later I received my NHS letter containing my results. It simply said” “Thanks for attending your cervical screening. You have a HPV positive result. It’s very common and many people will get it within their lifetime without knowing. Usually it goes away on its own, but if it’s long-lasting this may cause abnormal cells in your cervix. The cells can, over time, turn into cancer if left untreated. We also looked for abnormal cells in your sample and we did not find any, this means you are currently at low risk for cervical cancer.”
Admittedly, I was freaked out. HPV is something that’s transmitted sexually and it’s never nice knowing you’re carrying something that’s transmitted that way. Because I had received that positive HPV result, I was invited for another screening a year later (it’s usually every three years in the UK).
I returned to my GP surgery for another routine smear test with the practice nurse. Again, this was no different to previous experiences. This time when the results letter arrived in the post, it not only confirmed I was HPV positive but that they had: “Found changes to some of the cells in your cervix”. The letter went on to say: “In almost all cases these changes are not due to cancer, but we would like you to come for an examination – a colposcopy (which is basically a test to look at the cervix in more detail). It’s similar to having a cervical screening but will take place in a hospital outpatient clinic.”
They’d enclosed a leaflet with more details on and at this point I started to feel really nervous. My impulse reaction was to start Googling, which immediately filled my head with conflicting ideas on what to expect from my colposcopy. I felt even worse because all the documents said I could bring someone with me for support but because of covid, I wasn’t allowed. It scared me so much that I considered going privately, but the cost for the colposcopy would have been over £1,000 alone.
So I went into my appointment on my own, and left my boyfriend waiting for me in the car park. I was asked if I wanted to see my cervix on the camera during the procedure and I knew that might happen because I’d read about it online. I was encouraged to look but wished I hadn’t as I’m quite squeamish. There was one woman who did the procedure and two others who talked to me throughout and kept me calm and relaxed. As with a standard smear test, you need to be relaxed for the exam, but it’s hard in that situation. They took three biopsies from me. When they take them they ask you to cough and then they snip – it sounds painful but you can’t really feel it.
I felt incredibly proud of myself afterwards. I left the hospital and immediately burst into tears. I’d gone in feeling overwhelmed with nerves but it had in fact been virtually painless. I came home with a massive sanitary towel because of the after-bleeding, took some paracetamol and then cracked on with work.
There’s a fair few rules and regulations to follow after a colposcopy procedure, including no sex, tampons or swimming for a month.
Early May 2021.
I received my letter with results. It’s a histology report on the biopsies taken from my cervix during the procedure. There’s no sign of cancer, but they did show CIN (cervical intra-epithelial neoplasia which is a type of abnormal cells) and so treatment will be necessary to remove unhealthy tissue from cervix. I’ll need a minor treatment which will take 10 minutes.
Late May 2021.
I go back to the hospital for my minor treatment which is known as LLETZ treatment. Everything I’d read online about it has really bothered me, mostly because of the language. It’s called an ‘electric wire loop’ which I just found a lot. The name makes it sound so much worse than the reality.
For my appointment, I sit in the chair and am offered to see my cervix on camera – I don’t say yes this time. I’ve got nurses keeping me calm and distracting me whilst they inject my cervix prior to the treatment. I have six to eight injections in a circle, but I don’t feel them. I was incredibly nervous beforehand and was worried there would be an odd smell (something I’d read online) but I couldn’t smell anything at all – I’d even come prepared by covering my face and mask with a scented moisturiser.
It was traumatic for me because I didn’t know what was coming, but I feel like I’d be fine if I had to do it again. I went back to work immediately afterwards. After the LLETZ I had weird discharge which was grim – it was watery and bloody and went on for weeks just stopping and starting. I had to wear sanitary towels for 3-4 weeks which felt a bit shit and I was super nervous to have sex again because I didn’t believe I would be healed enough. But I had sex after a month and I used a tampon and both were completely fine.
My histology report comes back on the abnormal tissue removed from my cervix during the LLETZ. There’s no sign of cancer, but it did show CGIN (which is glandular CGIN) – which if not treated can lead to cancer. I’m told that to ensure the most efficient follow-up plan, the team will be reviewing my results at their monthly meeting in July and that they’ll write to me again after that.
It leaves me wondering if I ever had CIN or if it was always CGIN. Did they misdiagnose me or can you have both? I have so many questions. The letter left me upset that inevitably I would have to have more treatment and the realisation set in that this was something I’d be managing for some time to come.
I found out I have to have another round of LLETZ treatment. Super nervous because last time they thought they’d got everything and now they’re going deeper into the cervical canal. I’m allowed to bring my mum for emotional support and I’m so relieved to have her there with me. I feel so much better going into it knowing what to expect and what everything feels like – I know that the procedure doesn’t hurt at all.
I’m unsure if I’ll need any follow-up after this or what will happen next. Everyone I speak to now, I make sure they’re having their regular smear tests. But equally for those people who are going through the unknown territory of what happens when there are abnormal cells, I don’t want them to feel alone or end up reading things in the dark depths of the online forum world (which I did and just found awful). I’m so glad I went to my screenings and everything was caught early.
Obviously all stories and experiences will be different – but this is just one experience we wanted to start the conversation with. For more info on cervical screenings, colposcopies and LLETZ treatment, check out the NHS website.