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Lizzie - Interview 30

Age at interview: 39
Age at diagnosis: 36
Brief Outline: Lizzie was diagnosed with CIN3 in 2006, aged 36, and treated by LLETZ. She was very anxious before having treatment but praised the care she received from health professionals.
Background: Lizzie is married with three children. She is a self-employed party organiser Ethnic background / nationality' White British

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Lizzie was diagnosed with CIN3 in 2006, aged 36, after routine cervical screening. Looking back, however, she felt she’d had some minor symptoms while pregnant with her second child, but thought these could be cystitis or thrush. The symptoms subsided after the birth of her son.

 

When Lizzie went for a smear test, she did not expect to have any problems. She said, “I opened the letter just expecting to see normal results and it said severe cell changes. And of course it was a bit of a bolt from the blue. I was completely shocked and I think the first thing I did was cry, because obviously what everyone thinks of is, ‘Oh my God, I’m going to get cervical cancer.’ ”

 

Lizzie looked on the internet for more information and said she felt confused by the different terms that were used – CIN3, severe cell changes, dyskaryosis – and wondered what the difference between them was. She felt that there should be one term to describe CIN3 as this would be less confusing and worrying for women diagnosed with it.

 

Before treatment, Lizzie felt extremely anxious and wondered if she could be treated under general anaesthetic, but this was not advised. Her doctor prescribed her sedatives and Lizzie said these helped her, especially on the day of the operation itself. She said the procedure made her feel vulnerable and she worried about how painful it would be. At hospital, she was treated by LLETZ and said that the health professionals were all very caring and understanding.

 

About two years after being treated, Lizzie had another child. During pregnancy, she wondered if the symptoms she’d had before might recur but, fortunately, they didn’t. At the time of interview, Lizzie was attending six-monthly follow-up appointments.

 

Lizzie was extremely anxious before surgery and was prescribed a sedative. The staff were very...

Lizzie was extremely anxious before surgery and was prescribed a sedative. The staff were very...

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I was very, very, very, very nervous about the procedure because I have anxiety about pain and everything else. And I spoke to the doctor and I was sort of begging him to put me under a general anaesthetic because I just didn’t want to do it. And they said, well no, they don’t do that unless it’s for a cone biopsy.

But they assured me that it wouldn’t be too uncomfortable. But he did prescribe me some sedative to just help ease the situation, which helped me hugely I have to say because I was very, very nervous, and very anxious. And on the actual day, a couple of months elapsed and on the day of the actual biopsy, I took as many as was necessary of my sedatives and I have to say they did make a huge difference.

But the only uncomfortable bit was the local anaesthetic into my cervix. I flinched a bit at that, but it wasn’t unbearable. But it obviously was a little bit uncomfortable, but then it was all very quick, painless. They were very courteous. Very caring, and they really looked after me afterwards. They sort of sat me down with a cup of tea, and I felt a bit shaky and a bit woozy, and a bit wobbly. But they were really lovely; it was like being in a private hospital actually. And they made a very unpleasant experience a lot more bearable.

The worst thing for me was the local anaesthetic in my cervix which, you know, it wasn’t dreadful but it was just a bit sharp and uncomfortable. But even someone turning around and going, “Do you know what, you know I’ve had three children now, it can’t, it’s no worse than that,” kind of thing. You know, putting my mind at rest going, “It’s okay, you’ll be fine, you will get through it. It’s not awful.”

I know, again it’s a primal thing as a woman. You know, you’re laying yourself open, if you’ll pardon the expression. You’re in a very vulnerable position. You’re laying yourself open to quite probably a man who’s doing this to you. It invokes very primal fears, which you have to overcome.

And you need help to kind of overcome that. I mean I said to my husband it wasn’t so much the diagnosis that frightened me, it was the procedure because I was vulnerable, you know. You’re prone, you’ve got your legs in stirrups, you’re being dealt with and, you know, it can invoke all of those feelings that you don’t realise you have.

 

Lizzie and her husband read more about HPV on the internet. He was concerned how she might have...

Lizzie and her husband read more about HPV on the internet. He was concerned how she might have...

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And how did your husband react when you told him, when you’d got this letter and…?

Well he was obviously very concerned, and we looked it up and it said about the HPV virus. And there was a certain amount of, I wouldn’t say accusation but, “Well I haven’t got it. Have you, you know, where have you got that?” And I’m like, well I didn’t, you know, I haven’t been sleeping around or anything like that. I’ve obviously had previous sexual partners, you know. It’s a very common virus. You’ve probably got it, I’ve probably got it. 90% of the population’s probably got it.

But there was always that element of, “Well where did you get that? How did you get that?” You know, and it was very transient that attitude, but nonetheless it was there. So again, you know, it brings all sorts of feelings to the fore that perhaps you hadn’t realised were there.

I’ve obviously had previous partners to my husband, who knows. But I didn’t feel for me that it was in any way held against me. But I can understand how, nowadays, it might do because obviously it’s related to sexually transmitted disease. I think, as I say, two or three years ago people weren’t so aware of it. But I’d say well, if people are that bothered, then they’re not really friends at the end of the day. Because it doesn’t really matter does it?

 

Lizzie urges women to go for cervical screening, even though it may be uncomfortable. The thought...

Lizzie urges women to go for cervical screening, even though it may be uncomfortable. The thought...

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I think I’ve got to go six monthly for another year I think. And then as long as everything is all clear, then I think I can go back to yearly. But to be honest with you, I’d be happy to go six monthly for the rest of my life, because I just, you know, having been through it once, it really wouldn’t bother me.

It’s not very pleasant but I’d rather that than the alternative, so.

Quite a few women don’t go for screening when they get the letter or invitation. What message would you give to people who look at it and think, “Oh God, oh I don’t like the sound of that procedure, so I think I won’t go,”?

Well all I would say is, from my own personal experience, I had too much to lose not to. The thought of not going and what could have happened, and me you know, leaving my family behind, for the sake of, okay a few moments of discomfort. But it is only a few moments of discomfort, and it’s not unbearable. Anyone that’s had children has been through far worse.

It’s really, you know, not that bad. The thought of it is far worse than the actual process. And I would far rather go through that every day of the week than run the risk of, you know, leaving my family. So I would urge anyone to absolutely do it, bite the bullet, take a deep breath and just get on with it.

 

Colposcopy and treatment are quick and painless procedures. They are similar to having a cervical...

Colposcopy and treatment are quick and painless procedures. They are similar to having a cervical...

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I would say speak to people who’ve been through it. If you’ve had children, it’s [colposcopy and treatment] not as bad as that. You can, if you can get through having children, you can get through anything. If you haven’t, its no worse than a smear test. And, like I say, it’s a moment discomfort for a lifetime of peace of mind really. I think that’s all I would say is, you know, you’ve got to do it.

 

Lizzie cried when she got her results letter. She’d never heard of CIN3 or severe dyskaryosis and...

Lizzie cried when she got her results letter. She’d never heard of CIN3 or severe dyskaryosis and...

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The results came back. And I opened the letter just expecting to see normal result, and it said severe cell changes. And of course it was a bit of a bolt from the blue. I was completely shocked and I think the first thing I did was cry because obviously what everyone thinks of is, “Oh my God, I’m going to get cervical cancer.”

Now I’m the type of person who likes to sort of investigate as much as possible. I know the internet can be a bit of a mine field, but I would rather know the worst case scenario and know what’s going on. So I looked into it, and I looked at all the different types of cell changes because there’s various different descriptions' dyskaryosis, or CIN3 and I couldn’t work out the difference.

But, looking at the letter I kept going back, well is it this, is it that, is it this? And I phoned the nurse and she explained to me, and basically it turned out that I had the most severe form of cell changes before it gets cancerous.

 

Lizzie felt anxious and nervous before her colposcopy, but the staff were good and reassuring....

Lizzie felt anxious and nervous before her colposcopy, but the staff were good and reassuring....

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They [staff] were very keen to make everything feel as normal as possible. They didn’t want to panic me, you could see it. They were just like, “It’s fine, don’t worry.” And the staff were very solicitous when I was down there. They’re obviously very well trained to make women realise that yes it’s important, but we’re not going to just treat you like cattle. That it is a serious thing and we understand your vulnerability in all of this. And they were very good like that, because I was a bit wobbly and a bit tearful. And they were lovely actually, really, really nice.

Did your husband go with you to that appointment? Or you…?

Yes he did, yes. I mean at the time we just had my eldest son, so we all went together and he went and played with him. But then I knew they were there, you know, waiting for me when I came out. And that was comforting as well. But, as I say, the staff themselves were very courteous and very kind. And you could see that they’d obviously been coached or whatever for this particular sort of arena if you like.

So you had the colposcopy and were you told when you’d get the results and…?

Gosh it’s going back a few years now, so I’m trying to think. Yeah, I mean he basically sort of said, you know, “We’ll write to you with the results as soon as we’ve got them.” I don’t know how many weeks; I think it was a few weeks. Several weeks I believe, but that was a bit of a tense time obviously. I think it was about three weeks, a bit of a tense time waiting for that. But obviously when we got the results through, that was a very welcome relief.

 

Lizzie was reassured by her doctor that having a baby after LLETZ treatment would be fine. She...

Lizzie was reassured by her doctor that having a baby after LLETZ treatment would be fine. She...

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The other thing as well was having my mind put to rest about having other children as well. Because obviously having a portion of your cervix removed, you know, I was worried about the possibility of having other children. We hadn’t planned any, but we’ve had another one anyway. And he was like, “No, it’s fine, you know. The only one that’s likely to cause a problem is the cone biopsy, this one is fine because it’s just slicing off a tip off the nose.” He explained it all very easily so I understood exactly what was going on.

I wasn’t sure how it would affect my cervix and everything else. But he said, “Oh no, not a problem.” But obviously each case is different. But he sort of stated that what he was doing was not problematic. But even if I’d had the worst sort of option, it would still have been possible, you know. It would just have been a case of managing it, that nothing was impossible if you like.

 

Lizzie found the terms CIN3 and severe dyskaryosis confusing. She wondered whether she had one...

Lizzie found the terms CIN3 and severe dyskaryosis confusing. She wondered whether she had one...

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Was there any mention on the letter of CIN 3?

Yes. I think they used the two, because there’s two types of terminology and that’s what was confusing me. It was severe dyskaryosis /CIN3. And I couldn’t work out what the difference was. And I must admit that was confusing, because I couldn’t work out whether the CIN3 was in addition to what they were saying or instead of. And I didn’t realise it was two different ways of classifying the same thing. And it took me quite a while of investigating before I realised. And I think, well there needs to be probably just one common description so that it isn’t confusing. Because it muddies the waters a bit I think.

And so it’s difficult to know what to look up?

That’s right, that’s what I think, from my understanding, the CIN is the more modern description and the severe dyskaryosis or whatever, however it’s pronounced, is the sort of older fashioned term. But understanding the classifications of it was a bit confusing to start with. But eventually we got to the bottom of it. And the one thing I did find was, you know, lots of information about it once I’d delved into it a bit more.

 

Lizzie says she tells more people about her experience of CIN3 now than she did at the time. She...

Lizzie says she tells more people about her experience of CIN3 now than she did at the time. She...

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I don’t really recall telling that many people about it. But obviously I told my mum, who was extremely worried. I probably tell more people now than I did at the time, just because I think if I voiced it too much it would have made it too real. So I just kind of kept it to myself and my immediate family.

And I think by telling people it made it too big, you know. It was one of those things where if I just keep it with us, it’s just small and manageable. So yeah. I just, you know, it was just sort of close family that were really in the know. Had the results come back, you know, that the cells were cancerous, I might then have voiced it. But until that happened I was just like, “Lets just keep it low key.”

Did you come across any other women who’d had it before?

No. Actually, nobody I know. I did sort of, you know, you get the odd, oh the friend of a friend of a friend. But I didn’t actually know anyone directly who’d had it.

 

Lizzie took it easy for a day or so and her husband helped with childcare. She had some bleeding...

Lizzie took it easy for a day or so and her husband helped with childcare. She had some bleeding...

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So after you had the LLETZ excision you came home?

Yeah.

And was there anything after that? Some people said they had bleeding? Some said…

Yes, there as a bit. There was a bit of bleeding and a little bit of discomfort, you know. I felt a bit periody for a while. But I was allowed to lie on the sofa, which was quite nice for a few days. And I just….

Did you have your kids as well to look after? Was that…?

Well my husband did take some time off, so that was quite nice. I mean I think he realised that, you know, expecting me to just get up and do was a bit much. So yeah, he took some time off and stayed with me and helped to supervise the kids. Really it was only about 24 hours that it was uncomfortable. After that it was pretty much back to normal. But the bleeding didn’t last very long, and the discharge didn’t last very long. I think obviously it varies from person to person. But I was back up on my feet in no time really.

 

Lizzie was very happy with the care she’d been given and felt doctors and nurses were sensitive...

Lizzie was very happy with the care she’d been given and felt doctors and nurses were sensitive...

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They were very keen to make everything feel as normal as possible. They didn’t want to panic me, you could see it. They were just like, “It’s fine, don’t worry.” And the staff were very solicitous when I was down there. They’re obviously very well trained to make women realise that yes it’s important, but we’re not going to just treat you like cattle. That it is a serious thing and we understand your vulnerability in all of this. And they were very good like that, because I was a bit wobbly and a bit tearful. And they were lovely actually, really, really nice.

I absolutely cannot fault them. As I say, it was almost like being in a private hospital in terms of their care and their courtesy, and the sort of attitude towards you. I mean I’ve been in some hospitals, not for the same thing obviously, but where the nursing is very cursory, if you know what I mean. But obviously it’s a very delicate situation and they were absolutely lovely. You know, they brought me tea and biscuits afterwards, they looked after me and made sure I was emotionally okay.

I had a little bit of a cry. They were fine with that, you know, it was all very, they were very aware of how emotional this particular case can be. Especially with the potential outcomes, you know the hysterectomies. They’re aware that it’s a very loaded situation, and they looked after me incredibly well. And I just hope that everyone else has a similar experience really.

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