Cervical abnormalities: CIN3 and CGIN

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.