Posted on 11/06/2019

“I’d heard about cervical screening tests…but what happens if you get an abnormal result?”

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“I’d heard about cervical screening tests…but what happens if you get an abnormal result?”

Cervical screening tests prevent 8 out of 10 cervical cancers from developing and save approximately 5000 lives every year in the UK

In the months leading up to their 25th birthday, young women across the UK are invited to have a cervical screening test, also known as a smear test. The process takes cell samples from your cervix which are vital to pick up any changes that, without treatment, could lead to cervical cancer. However, a number of young women postpone and even miss their cervical screening test as they feel anxious or nervous about attending it.

For cervical screening week this year we have spoken to Emily, a young woman who has shared her own experience with cervical screening and her LLETZ procedure. She hopes it will encourage other women to attend their cervical screening test and help bring the topic of cervical screening to the forefront of people’s minds.

What is a cervical screening test?

The purpose of a cervical screening test is to see if there are any abnormal cell changes in your cervix. A cervical screening test can help to prevent cervical cancer as it can identify pre-cancerous abnormalities that should be removed.

Your cervical screening test will usually occur in a private room with a GP or practice nurse and you can take a family member or friend with you if you would like their support. You can also request a female nurse or doctor. Cervical screening tests are a very personal examination and many women can feel worried or embarrassed about having it done. Everyone’s experience will differ slightly and if there are any circumstances which concern or worry you, either before or after your cervical screening test, you may want to reach out to a friend or family member who has had the screening done before. GPs and nurses can also answer any questions you might have and there are organisations, such as Macmillan and Jo’s Cervical Cancer Trust, which have plenty of online information and support groups where you can find people going through similar experiences.

At your appointment, the GP or practice nurse will take a cell sample from your cervix. In order for them to take this sample, a small device called a speculum will be gently inserted into the vagina to open the passageway to your cervix. The cervical screening test will be over in a matter of minutes and it is rare that you will feel anything other than a little discomfort. Your cell sample will be sent off for analysis and your results will arrive through the post a few weeks later.

Emily was very pro-active with her cervical screening test. She made the appointment before her 25th birthday and was happy to go through the screening, thanks to her mum’s support.

“I was lucky enough that my mum introduced me to the concept of cervical screening and why they were so important as I was growing up. As soon as I received a letter with an invitation to attend a cervical screening appointment, I contacted my doctor’s surgery straight away and booked myself in.”

What happens after the cervical screening test?

Although there has been an increase in campaigns and awareness of smear tests over the past few years, there is another matter that is not always addressed: what happens if the cervical screening test comes back and there are abnormal cells on your cervix?

After her cervical screening test, Emily was informed that she had abnormal cells that would need to be removed. The treatment she would undergo is called LLETZ, also known as loop diathermy. Emily had heard a lot about cervical screening but nothing about a LLETZ procedure or what happens after your cervical screening test.

“My LLETZ procedure took place on my 25th birthday! As this was a first for me, I was a bit nervous as I waited to be called in for treatment. However, I remember the team at Derby Hospital being absolutely incredible and reassuring.

“The treatment began (if I remember correctly) with three to four small injections of anaesthetic into my cervix. Sounds horrific, however it was only slightly uncomfortable and it was the most uncomfortable part of the whole procedure! Then a substance was placed on the cervix which highlighted the abnormal cells that the gynaecologist had to remove. I was told there and then that the abnormal cells were on one part of my cervix and were grade CIN3. The LLETZ wire was then inserted and the cells were removed and sent for further tests to confirm the grade of the cells.”

It’s important to understand that having abnormal cells does not mean you have cervical cancer. There are different procedures, like an LLETZ, that can remove abnormal cells to prevent them from becoming cancerous. If abnormal cells keep reappearing after treatment doctors may suggest surgery to remove your cervix, but this is very rare.

Support, awareness and going viral

Around the time of her LLETZ procedure Emily was lucky to find the daughter of a family friend who had been through a similar experience and could offer her reassurance and support. However, Emily was still aware that women, even some of her friends, were missing their cervical screening test and there was still very little information shared about what actually happens after the screening. So, following her time at the hospital, Emily wrote a Facebook post about her experience in the hope that she could encourage at least one woman to attend their cervical screening test or LLETZ procedure.

“There was this middle piece that was missing from the puzzle. I’d heard about cervical screening tests and, due to Jade Goody raising awareness, I also knew how important they are to attend. However, nothing is mentioned about what happens if you receive an abnormal result or what an LLETZ procedure is. I had a page where my followers were 70% female with an age range of 18 – 35. It was an opportunity to provide that missing piece of the puzzle and to reassure women that it was ok.”

Emily’s post went viral and her story touched many more lives than she ever expected it would. As the post became progressively popular it began to accumulate many comments. Women were sharing their cervical cancer stories, tagging their daughters or sharing their fears about the cervical screening and other tests. They were greeted with support from others who had experienced the test and treatment or who had been affected by cervical cancer.

Emily also received some private messages after her post, including a few from other women who were going to be attending an LLETZ exam themselves.

“I had a few women message me to say that they were going to be attending an LLETZ procedure after an abnormal cervical screening test result. I stayed in touch with these women as they went through the process, as some were nervous and I was happy to put them at ease.”

Messages also came from partners, fathers and husbands. One message that has stayed with Emily since posting her experience was from a man who had been personally affected by cervical cancer.

“There were many comments, but I do remember responding to a private message from a man who had recently lost his wife to cervical cancer leaving behind two children. He told me his story and thanked me for raising awareness. His message really struck me and how crucial cervical screening tests are.”

Who can, and should, get a cervical screening test?

Up to six months before they turn 25, women in the UK will be invited to attend a free cervical screening test. Transgender men of this age who still have a cervix should also attend a cervical screening test.

After the first screening at age 25 you will be invited back every 3 years for another test until the age of 49. From the ages of 50 – 64 you will be invited to attend one appointment every 5 years and only be asked to return over the age of 65 if one of your three previous tests had abnormal results. Emily has attended two more appointments since her LLETZ procedure.

“I had a cervical screening test 6 months after the LLETZ procedure to check that all the cells had been removed. That test came back all clear! I then attended another test 3 years after that and that came back clear also.”

Women under the age of 25 are not invited to have a cervical screening test as it is extremely rare for them to develop cervical cancer. It is also likely that they will experience cell changes in their cervix which will disappear or change again before they reach 25. We asked Emily what she thought about the 25-year age limit for cervical screening tests.

“To my understanding, cervical cancer under the age of 25 is rare. However, I do believe that if a woman under the age of 25 is showing symptoms of cervical cancer that they must be provided with a cervical screening test.”

Breaking the taboo of smear tests

Despite the increased media coverage on smear tests, there is still more to be done to encourage all women to book their test and ensure they have the right support. Emily spoke about the importance of learning about cervical screening from a young age, but highlighted that she was only exposed to knowledge about cervical screening tests from her mum, rather than through school or other educational facilities.

“Lack of education does not help and I think cervical screening tests should be discussed at secondary schools and as women are growing up. This way, women have a good understanding to make well-informed decisions when they receive their first cervical screening test invite.”

Every year, Emily is delighted that her Facebook post comes to life again as it appears on people’s timelines and she receives a number of new comments and messages every year on her birthday.

“Any opportunity presented to me whereby I can raise awareness by talking about my experience, I take advantage of. I am very pleased to be contributing to this article nearly five years on!”

Being able to support and reassure other people online who are going through similar experiences is helping to break the taboo of cervical screening tests and create nationwide support networks for those who are anxious about attending their screening appointment or treatment procedure. Emily has played an inspiring role in this network by raising awareness and sharing her own story.

“I think that many women are nervous about attending cervical screening tests as they believe that a cervical screening test may be painful or they are concerned about showing their intimate areas to a nurse. I have seen an increase of media coverage on the subject of cervical screening tests which is great, but in the age of social media, I think all women should become online advocates and share their experiences so we all help each other.”

Finally, we asked Emily what she would personally like to say to encourage other women to attend their cervical screening test.

“Treat your cervix like it is your heart, lungs or kidneys. It is an organ of the body that requires just as much care as any other organ and it’s nothing to be ashamed or embarrassed about. You only have one body for the rest of your life and any opportunity you have to have a cervical screening test (or any other tests), you must take advantage of, as if you are taking your car for an MOT.

“We are lucky that cervical screening tests are free on the NHS and that throughout the UK we have incredible gynaecologists and nurses who support women everyday with cervical screening tests and LLETZ procedures and they could save your life!”

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