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Cervical abnormalities: CIN3 and CGIN

Views on cervical screening

Cervical screening is the best way to detect changes to the cervix before cervical cancer develops. This is one of the few cancers that is preventable because abnormal cell changes can be picked up before they have a chance to develop into cancer. On the NHS in England, women between the ages of 25 and 64 are routinely invited for a cervical screening test. The NHS Cervical Screening Programme offers screening at different intervals depending on age' women between 25 and 49 are screened 3-yearly and those between 50 and 64 are screened 5-yearly. The age that screening starts and finishes varies between the different countries of the UK. If they wish, women can pay to have more regular cervical screening at Marie Stopes family planning clinics and other private clinics.

 

A doctor explains that most cervical screening test (smear) results are normal. Apart from pre...

A doctor explains that most cervical screening test (smear) results are normal. Apart from pre...

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Over 90% of smears are normal. So the most likely thing to happen is that your smear is reported as normal. Sometimes it can pick up inflammatory change, and sometimes it can pick up infection, like thrush. It’s not designed to pick up sexually transmitted diseases. So a normal smear doesn’t mean you don’t have sexually transmitted disease. And if you’re worried, then you should go to your local sexually transmitted diseases clinic and have a check for that specifically.

The women we interviewed said they were glad they’d gone for cervical screening when they had because their abnormalities might have progressed if they hadn’t. Although some women had always gone for screening when invited, others said they’d missed appointments in the past but would always attend now. They advised other women to attend and stressed the importance of having a cervical screening test (smear), several noting how quick the procedure was. Some also stressed that it was important not to be put off having a cervical screening test just because it was unpleasant. A few women said it is much better to have cervical screening and try and prevent any abnormality from progressing because treatment for abnormalities could be more difficult than a cervical screening test.

 

Gillian used to throw her cervical screening invitations away. The nurse persuaded her to have a...

Gillian used to throw her cervical screening invitations away. The nurse persuaded her to have a...

Age at interview: 30
Sex: Female
Age at diagnosis: 27
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It was only because the nurse badgered me to get a smear done that I would’ve got a smear test done. I wasn’t going to. And she was on at me every time. I think I was going to Thailand and I was getting some injections for a holiday and that’s why she said to me, “Well while you’re here, why don’t you just get this done. I’ve sent you a few letters and you’ve ignored them.” So I think then it was only because she was so relaxed about it and made it normal, that I did get it done.

And lots of women miss their smear tests or just put the appointment away.

Oh I just used to put them in the bin

But you’d been for a couple in Ireland?

Years ago yeah, when I was younger.

And then left it for quite a while?

And then left it. As soon as I came to England, that was the least priority, it just went in the bin. Which is silly now but that’s true, that’s what happened. And my friends have done the same thing. Lots of my friends have said, “Oh hearing what happened to you, that makes me, I must get booked in.” And I said, “But you said that a year ago.” And she still hasn’t. So it’s interesting I think, I don’t think people are still really taking it that seriously. Maybe the Jade Goody thing will make people really think. Apparently lots of women have booked appointments, which is great.

Well I’d definitely advise women to go for their smears regularly. I think it’s every two years you’re meant to go. But I’d definitely advise not to put things off just because they’re unpleasant. And I think that’s the problem is, because you avoid your smears, then something that’s probably easily treatable at the beginning could be avoided. And what’s very slightly unpleasant is nowhere near as unpleasant as if you leave it to a colposcopy stage. So I definitely would say the most important thing would be to go for smears regularly.

 

Michelle advises women to go for cervical screening when invited. It can be embarrassing but it’s...

Michelle advises women to go for cervical screening when invited. It can be embarrassing but it’s...

Age at interview: 31
Sex: Female
Age at diagnosis: 30
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So, for the fact of going for a smear test which takes five minutes, it’s just, I mean it’s so worth it. And you know, cervical cancer, and the rates are dropping because the screening is there now.

If you prefer like to have a woman doing it, that’s absolutely fine, but you know, one of the reasons I didn’t go was because I was embarrassed. And then look at the process I had to go through; operations, internal examinations, so actually, if you do have something and they treat it early on, the repercussions are minor, whereby if you don’t kind of get, you know, if you go past that stage, then it has a lot more impact.

And if you find that embarrassing, the smear test, then obviously you’re going to have further tests which you’ll probably find worse to be honest. So, I would say to anyone that it isn’t really that bad, it’s not painful. It’s not difficult. And if you find it is at any point, you can always ask them to stop, and you can ask for somebody else to do it.

So, you know, if you find it distressing, you want to go back at another point or take somebody with you, you know. I don’t think anyone would mind if somebody else being there with them. So it’s very well worth going for the test in the first place.

 

Jo used to delay going for cervical screening because she was busy at work, even though her mum...

Jo used to delay going for cervical screening because she was busy at work, even though her mum...

Age at interview: 33
Sex: Female
Age at diagnosis: 25
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They often, you know quite often come back and said they didn’t have enough cells and I’d have to go back. And I didn’t always go back probably when, you know, they were supposed to because I’d always had work commitments.

Like I say, it was only really because my mum, because about 12 years ago I think she had cervical cancer, well she had an element of it, and she had to go into hospital for a few days. But she has been quite on my case and on my sisters case about, you know, making sure that I make the time to go and have check ups. Unfortunately, it’s like a lot of things, it’s not until you have a bad experience, or you know someone who is very close to you that has that, that you actually sit up and you take it seriously.

And really to look back now and think, you know, because I didn’t get a report in time, or you know I didn’t meet some deadlines, that you’re putting that over having to have a serious check up is ridiculous. It’s absolutely ridiculous.

Many of the women we talked to said it was important to go for cervical screening because, if there were any problems, these would be detected and treated early.

 

Melanie encourages women to go for cervical screening even though they may feel scared. If...

Melanie encourages women to go for cervical screening even though they may feel scared. If...

Age at interview: 29
Sex: Female
Age at diagnosis: 29
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Definitely go. In fact out of everything, everything now, if you have an appointment for anything, you’ve got any concerns of any physical health, I’d just say go. Just get it checked out, even if at the time it seems silly. You feel scared, obviously you’re going to be scared, whether or not to go, for a screening. But go, because the earlier, you know it is treatable, really, at the end of the day. Whether it be CIN1, 2, 3, or whether it be cancer, it’s all treatable. The longer you leave it, then it’s going to have more difficulties, but at the end of the day it’s all treatable. And to be honest the treatment isn’t that bad. It’s all do-able. Yes it’s very nerve wracking, and you get very anxious but it’s do-able.

Until they were diagnosed with CIN3 / CGIN, many of the women we interviewed said they were unsure of what cervical screening could find. Several wrongly thought it was a test to find cancer, rather than one to screen for any abnormal changes and so prevent cancer developing. Most had never heard of CIN or CGIN before and felt that there should be more about these conditions in the media. Several women said that, although media coverage of reality TV star Jade Goody’s experience had raised awareness of cervical cancer, most people still did not know about CIN. Since their own experience, many women had encouraged their friends and family to attend for cervical screening. For some, telling other women about their experience was also a way of raising awareness of CIN3 and cervical screening.

 

Colleen persuaded her flatmates to go for cervical screening. She feels that, had she been...

Colleen persuaded her flatmates to go for cervical screening. She feels that, had she been...

Age at interview: 25
Sex: Female
Age at diagnosis: 25
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I live with girls who are 26 and they haven’t been for their smear tests yet. They have now. Because I’ve been quite militant with them that we should all go. And I think the problem in terms of educating young people, I know it’s hard to get 25, 26, 27 year olds to go for their smear tests, but I think that’s because you don’t realise what happens afterwards if you haven’t gone, is a helluva lot worse than if you had just gone.

Say if I’d gone when I was like 22 or 23, I don’t know, and it had been CIN1, and then it had been able to be watched from an early stage, I think that would be a lot less worse than suddenly being told, you know, you’ve got severe dysplasia. It could be really bad in 12 months, we’re going to have to put you in surgery in the next 4 days. I think that’s really scary. I would say I’m a reasonably bright person, and I seek out that kind of information, I have to for my job. And I do just generally, and I had no idea what happens with the results. I knew what happened in the screening process, but I didn’t know what happened if you had a bad result. So I think if I’d have known that, I would have been more inclined to go earlier.

 

Pam has been trying to persuade her friend to go for cervical screening. She would like her...

Pam has been trying to persuade her friend to go for cervical screening. She would like her...

Age at interview: 40
Sex: Female
Age at diagnosis: 38
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I have a friend at the moment who told me a while back, about a year ago, that she’s had a coil in for 10 years and she hasn’t been for a smear in that time either. And she’s older than me, and I said to her, “Please please.”

It was when Jade Goody and all that come out as well, and I said to her, “Look if you won’t listen to me, you know, it happens as quick as me, to me as it did to Jade Goody,” basically, “Please go and see your doctor and do something.” I said. And she kept saying, “I’m scared, I don’t want to. My dad died of cancer. I don’t want to, I don’t want to know.”

But I said to her, I told her about the consultant that I’d been seeing, a woman, and she was, and I told the woman about her as well. And she said to me, “Give her my number. Tell her to ring me anytime.” And I am still to this day trying to convince this woman to go to the hospital. And she keeps on saying, “I will, I will.” But she knows she’s only got to ask and I’ll give her the number, and the woman will see her.

Yeah, a lot of women are quite scared of going aren’t they? In case…

Of going full stop. I mean on the flip side of it, my daughter is 21 years old; she gave birth to her second child last week and her eldest is 11 months. So she’s had two pregnancies really, really quickly, and yet she will not be getting a smear test until she’s 25, which I think is absolutely preposterous. They are trying to say that girls are having sex earlier these days, and yet they’re making it longer before they test them. So I have told her to tell her GP when she goes for her six week check, “My mum had CIN3, I want a smear.” And I’m hoping and praying they will give it to her.

Some of the women we spoke to thought the age at which cervical screening starts in England should be lowered. A few had had cervical screening tests (smears) before the age of 25 because they’d had other gynaecological problems such as endometriosis, because they’d had children or been on the pill. Sam was diagnosed with CIN3 at the age of 21 and felt that cervical screening should start at around the age of 16.

 

Sam believes that girls are having sex at a younger age so cervical screening should start at...

Sam believes that girls are having sex at a younger age so cervical screening should start at...

Age at interview: 22
Sex: Female
Age at diagnosis: 22
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I think if it’s brought to girls younger, I’d say from at least 16, 17, because girls are having sex a lot younger, and people, girls are having babies at 13, so why can’t we have the smear earlier? Because when it starts it’s transmitted by having sex, so I don’t understand what the problem is from lowering the age.

Because I think maybe they’re turning a blind eye. I don’t know but girls are having pregnancies at school, whether they have the baby or not, so that means they’re having sex. That means they could have the HPV. And that’s what I don’t understand why it got raised to 25 and why they were having such a hard time trying to get it lowered. Because I know something about the health, something the government health thing, they’ve not put their vote to it now. They’ve put their vote against lowering it. And I don’t understand why, I really don’t.

 

The cervical screening age in England was changed from 20 to 25. A doctor explains why cervical...

The cervical screening age in England was changed from 20 to 25. A doctor explains why cervical...

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It [cervical screening] used to start from the age of 20 but what’s become apparent is that women aged between 20 and 25 are most unlikely to have cervical cancer. There are a lot of changes occurring in the lining of the cervix at the time, which can be misinterpreted as cancer.

For example, if you did cervical smears in women aged 20 to 25, one in three of them would have apparent abnormalities, compared with the normal population where 1 in 14 have apparent abnormalities. So there are a lot of what we call false positives. And this may lead women to be treated unnecessarily and then put them at risk of miscarriage and premature labour later in life. So we know from scientific data that it’s safer to wait until 25.

Having said that, if a woman is worried, if she gets symptoms like bleeding after sex or bleeding in between periods, then she must see her GP.

Jane advocated cervical screening but said she would like the age limit increased beyond the age of 65.

 

Jane had a recurrence twenty years after her first diagnosis of CIN 3. She would like to continue...

Jane had a recurrence twenty years after her first diagnosis of CIN 3. She would like to continue...

Age at interview: 50
Sex: Female
Age at diagnosis: 30
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Just very recently as well, when Jade Goody died, I became aware that there’s an age limit and they only do smear testing I think between the age of 25 and 60 is it?

64.

64. So I thought that was a bit worrying as well because I intend to live way past my 64th birthday. And I know from my own experience that, you know, I’m on a 20 year cycle for these cells. If it takes them 20 years to come back again, then you know I’ll be well into this time limit.

Also I have two daughters, and they’ve got boyfriends. One’s got several and one’s got a steady boyfriend. They’re still entitled, even though they’ve been on the pill for four, three years respectively because there’s a years age difference between them. You know, they’re not entitled to have smear tests and they might be you know, it might be something they’ve inherited from me. Or they just might get it anyway from other of these factors, so that seems a bit of a worry. What, you know, what will happen when I get older, and why are they too young? And that is a worry.

Marjory, who was 64 at the time of interview, said her last cervical screening test (smear) was so painful she would not be attending again. Sometime after the interview, though, she told us that she’d recently had another cervical screening test (smear) and the result was normal.

 

Marjory said her last smear was very painful and she bled a lot. She wondered whether it was...

Marjory said her last smear was very painful and she bled a lot. She wondered whether it was...

Age at interview: 64
Sex: Female
Age at diagnosis: 39
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I must say though, the last one I had last year [smear test], it was absolute butchery and I’ll never go back for another one. And I’ll be sixty- I’m 64, it was absolute hell. I had it done in the hospital and it was really painful, and very bloody.

Did you always have them at the hospital usually, or at your G.P.’s surgery?

No I have them at the GP’s surgery, and then when I moved I had them at a clinic but, you know, I used to worry about them. I used to read a lot about how they were supposed to be taken, that they had to be taken from three parts of the cervix. I used to ask the nurse, “Are you sure you’ve done, you know?” And she would look at me as if I was mad, or sometimes I would feel she didn’t know what I was talking about. But I was always afraid that if it didn’t hurt, or it wasn’t painful, that it hadn’t been done thoroughly. But yes, so there was always worry surrounding it after, yeah.

And this last one you’ve had was particularly painful?


That was after, I don’t know why. She thought it was because of the change of life, that it was difficult getting access and that. And I bled a lot, bled a lot. And it was very, very painful. Or whether it was just the way she did it I don't know.

Some of the women we talked to stressed the importance of attending colposcopy and treatment appointments if abnormalities had been found. Others encouraged women to attend all of their follow-up appointments (see ‘Follow-up care). Most felt reassured by having cervical screening tests (smears) at follow-up, several saying they would be wary of being screened less frequently. Katie said that, although she would attend her follow-up appointments, she understood why women often ignored their invitations for cervical screening.

 

Joanne missed cervical screening appointments in the past but will attend all her follow-up...

Joanne missed cervical screening appointments in the past but will attend all her follow-up...

Age at interview: 36
Sex: Female
Age at diagnosis: 35
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I think it’s made us look at life differently, but it’s also made us more aware how very important it is. How you have to go for these smears. You have to. And even if you end up with three, four letters off your GP you might need to go, don’t ignore them, don’t ignore them. Because I did, I ignored them. I must have ignored about four and they still managed to catch up with us when I moved house. I moved house three times in three years and they still found, and obviously I still used to get letters from them. So it was a case of, “Please go, it’s very important, it could just save your life.”

And you’ll be going for your yearly…?

Yeah, oh absolutely, yeah religiously. Religiously. Yeah, religiously. And then obviously when my daughter gets older, she’ll be made very aware of what’s going on. And in a couple of years when she’s due to have her HPV, I’ll explain to her exactly why she, why it’s vitally important that she gets this injection. Because I think it’s just, it’s crucial. The doctor, they’re like, you have them for a reason. You do have them for a reason.

 

Katie has made lots of plans but, if abnormal cells are found at follow-up, these plans will be...

Katie has made lots of plans but, if abnormal cells are found at follow-up, these plans will be...

Age at interview: 28
Sex: Female
Age at diagnosis: 28
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What would you say to anybody who’s thinking, “Oh should I go or should I leave it?”

Well do you know what? I can actually see now, and I mean I’ll never be, after this, my boyfriend won’t let me, but I can see now why, say for example, Jade Goody got to where she did because now I kind of think I’m kind of, but I’m really dreading my four month thing [first follow-up appointment], because now I feel okay.

I feel perfectly okay and I almost feel like what happened to me happened to somebody else. It doesn’t actually feel like it’s happened to me. And I just think, in a way, I don’t really want to go into the hospital in June because I’m going on holiday in July and I’ve got some other stuff to do in August. And I think, “God if he tells me that it’s not alright, then that’s going to mess all my plans up again and I’m going, it’s going to basically put me back to square one.” But probably be a little bit worse because like the next stage, it can then try and it can affect fertility.

So it’s actually going to be even worse than the first time around if he says that. So, “Oh I might go in July.” And I know, I’m not going to because I can’t, but I can see how people put if off. And the thing is, the only thing that I can say is, whether you’re going to know about it at some point. Okay, if you’ve got something, the earlier you know about it, the sooner something can be done about it and the less tragic it’s going to be.

Pat, who was diagnosed with CIN3 in 1993, said she'd been wary of cervical screening at the time because there’d been negative publicity about it. Her cervical screening test results had also, initially, been mixed up with someone who had the same name. She felt that the service had greatly improved since then, and encouraged women to attend for screening when invited.

 

Over fifteen years ago, Patricia was concerned about the reliability of cervical screening. She...

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Over fifteen years ago, Patricia was concerned about the reliability of cervical screening. She...

Age at interview: 55
Sex: Female
Age at diagnosis: 38
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Thinking back, what fuelled my anxiety attack, at the time there was a lot of adverse publicity in the newspapers about poor test results from smears. It was often in the head lines that women had died because the test had been proven to be, it was like a false negative do you call it when its? Yeah a false negative. That’s what it, yeah, a false negative.

So that frightened me because I thought how can I be sure, even when I have a repeat smear or whatever, that its, I can rely on it? So I didn’t have much confidence in the system, in addition to that earlier problem with the GP mixing up the results.

I think that now the Health Trusts have to have a higher level of competences in their screeners from what I can gather. So I think maybe now things are better.

If a woman was invited for screening, and she wasn’t sure about going. What would you say to her?

Just go and don’t, oh yeah, vital, absolutely vital. I think it’s improving so much, so the screening is effective. And I think that, you know, mortality rates have dropped I think since the service has been improved. And I think just from what I’ve heard, I would have more confidence now, as I say, in the screening process and results, reporting and stuff now. So yes, I mean I would encourage anyone definitely to go in for screening.

Maria said that, because cervical screening had not picked up her abnormality, she feels more reassured by having both a cervical screening test (smear) and visual examination.

 

Maria often wonders what would have happened if she'd only had a cervical screening test (smear)....

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Maria often wonders what would have happened if she'd only had a cervical screening test (smear)....

Age at interview: 34
Sex: Female
Age at diagnosis: 33
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The smear test was fine but they found Chlamydia and they spotted the polyp. So it was the polyp that actually triggered, so that my doctor referred me to an oncologist to check it out. And he took it out and analysed it, and then the CGIN came up first. And then when they, once they took out the cone biopsy, the CIN3 came out. So I mean I think it’s really important maybe just to have more than a smear test unfortunately.

I often wonder, had I gone on the NHS and just had a smear test or had I got pregnant before, what would have happened? So, in a way, I’m really, really grateful that they caught it in time and that, you know, I had the visual examination as well. Because otherwise it might, you know, it might have
been undiagnosed.


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Last reviewed July 2017.
Last updated May 2014.
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