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Cervical abnormalities: CIN3 and CGIN

Perceptions and experiences of health care

Many of the women we interviewed were happy with the care they received from doctors and nurses because they’d been informative, sensitive and approachable. Some said they were pleased and relieved to be treated quickly on the National Health Service (NHS) and that the short wait for colposcopy or treatment had been reassuring. They were also happy with the information they were given by hospital doctors. A few women praised the information and support they’d been given by their GP.

 

Melanie was nervous before her colposcopy but said the consultant was fantastic. He told her all...

Melanie was nervous before her colposcopy but said the consultant was fantastic. He told her all...

Age at interview: 29
Sex: Female
Age at diagnosis: 29
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I went [to the colposcopy clinic] and it was fine. I was very nervous about it while I was sitting there, in that waiting room it was quite, a bit nerve racking and things. But yeah, that’s just because it’s your cervix isn’t it? It’s very, to be wary to be having treatment and things for. But when I went in, the consultant was absolutely, he was fantastic. He was a very nice gentleman. Sat down, made sure he explained everything to me about the procedure, what was going to happen during the colposcopy. Very much similar to a smear really.

I also had another nurse in, and a student nurse, so that was very good. Although obviously I could’ve said no. But she was lovely. She sort of held my hand and kept talking to me, and he was absolutely fabulous, very relaxing. Made you feel very comfortable, or as comfortable as you can be in that situation I suppose. But he was lovely, yeah. It was good. A good experience really. It was, he was nice.

Women we interviewed appreciated being able to ask questions before, during or after colposcopy and treatment, and felt it was important that the doctor had time to answer their queries or explain the procedures. Some said the staff were caring and reassuring during procedures and this had helped them to feel at ease when they had often felt vulnerable.

 

Jane felt she could talk about her fears and ask questions. Her consultant made a difficult time...

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Jane felt she could talk about her fears and ask questions. Her consultant made a difficult time...

Age at interview: 45
Sex: Female
Age at diagnosis: 35
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I must say absolutely on all occasions everyone was just incredibly helpful and yeah, it was very, considering what I was going through. I look back now and think that it was a very positive, all the medical professions were there to make sure I got better. You know, and I could sort of talk about the fear that I had, even down to like sort of wearing a hospital gown, and people just like testing your heart beat and stuff. Things that you’d never really had to deal with. And I mean I’ve got four children at home, and you know, all that worry, but that in fact they made it very easy to go through what I was going through. Still not knowing at this stage how advanced things had been.

Having continuity of treatment, you know, the consultant I had who saw me through from more or less the former stages, even going for the colposcopy and I would know he was there. And if ever I wanted to sort of speak to him somebody would say he would be available or you could come back. And that was so important, to have that sort of individual sort of understanding, that I knew that nothing was too much trouble, no question was going to be too much for him. And even though he had millions of other patients, I was just as important. And once you feel that sort of understanding, then I think one relaxes into it and that’s when you, you know, and I don’t know, my experience of that, as I say, and it was the first time I’d been in hospital, and that mattered a lot you know. It really did.

Some of the women we talked to praised the care, empathy and support they got from nurses, especially during procedures, for example holding their hand or distracting them from the procedure by talking to them. A few said the atmosphere during appointments was calm, relaxed and light-hearted and this made them feel less anxious. One woman praised the nurse at her local surgery, who’d had CIN3 herself and was able to tell her both about the physical and emotional effects of CIN3. Understanding the emotional effects of CIN / CGIN was very important to women. A few said their GP had been particularly good because he or she had understood the emotional impact of being diagnosed with CIN / CGIN and had been able to offer support outside the hospital setting.
 

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...

Age at interview: 39
Sex: Female
Age at diagnosis: 36
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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.

 

Michelle feels she couldn’t have got through it without the support of her GP, who understood the...

Michelle feels she couldn’t have got through it without the support of her GP, who understood the...

Age at interview: 31
Sex: Female
Age at diagnosis: 30
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I have to say that from my experience of my GP, I don’t think I could have got through the whole process, and I don’t think I would be sat here today talking in the way that I am, if I didn’t have such a fantastic GP.

I did visit other GPs in the practice and, although they were fine, they didn’t really cater to the emotional side. But it was kind of a very much like, you know, you’ve had CIN3 and now it’s been treated, so that’s fine. But they didn’t really understand the emotional side effects and the impact that it had.


Some felt their care could have been better. They would have liked more information from doctors in clear, non-medical terms about their diagnosis, planned treatments and what to expect after treatment. They felt the lack of information had made their experience more difficult. Gillian and Debbie said that it was only when they read their results letter that they found out they’d had a cone biopsy. Gillian was very disappointed in the care she was given and changed to another consultant.
 

Gillian’s new consultant gave her lots of information, which he got by writing to her first...

Gillian’s new consultant gave her lots of information, which he got by writing to her first...

Age at interview: 30
Sex: Female
Age at diagnosis: 27
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He [new consultant] helped me write a letter to the hospital with lots of questions about…. I hadn’t, he wanted the histology report and sort of explaining what the findings of the tests had been, and why so much of the cervix…. So in a further appointment, I think I had about six appointments with him in Ireland over the next six months. But once I was a bit better and had stopped bleeding, he measured and he actually found out that half of my cervix had been removed.

Did you stay in Ireland during that time, the six appointments?

No, I flew back to see him, and I had a lot of trust in him. And he put the whole thing right for me because he’d taken everything, all the concerns that I had seriously. He then measured the cervix, and a normal cervix I think is about four to four and a half centimetres, and I was two, or two and a half centimetres. And I think once the results came back from the hospital, what they confirmed was the presence of the CIN at the outside of the cervical canal, not necessarily as high up in the, you wouldn’t, not where you would have needed to remove that amount of tissue.

How was he so different to the other doctor?

He was fantastic. He was lovely. He spent a lot of time at the beginning just listening. And it was the first time in the process that anybody had spent any time listening. So I told him what had happened and what my worries were, that I was bleeding still, and that I’d been for a colposcopy. And it was then he said to me, “No, that’s not right.”

And I think all the worry that I’d had, that I was making a fuss or that maybe it was right and I was being, I felt silly and it’s so embarrassing anyway, to discuss it with so many different people. I think he was just so, he was very good and very, I could trust him immediately. And he didn’t dismiss everything and he actively sat and helped me work out all the things that we could do, and all the things that I needed to do. And he kept telling me not to worry. Not to worry at all. And within the next six months then we’d do a smear, but it would be with him, and I didn’t have to worry about going back to where it had happened. And I think all of those things just put me at ease.
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Bev’s new consultant took time to explain the procedure, though it took some time to do because...

Bev’s new consultant took time to explain the procedure, though it took some time to do because...

Age at interview: 33
Sex: Male
Age at diagnosis: 33
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Bev' We basically went to hospital 2. I got called into the actual room by the nurse, and instead of just calling me into the little side room, I was actually called into the main room. The consultant number 2 was sat at the desk and obviously they had on the letters that I’d been to hospital 1, and obviously asked me what had happened so I explained everything to her with regards to what had happened at hospital 1. She went through my full medical history with myself, family history of anything like this, so I was able to sort of tell her everything.

She explained everything to me. She explained the colposcopy, what CIN3 is, and she explained the whole lot to me. And actually asked me that if she could do the treatment there and then, would, you know would I be happy for her to do it that day?
I was like, “Yeah please.”

I got asked to sign a consent form to give my consent to having the treatment done. She went through, you know, all the possible complications, and things that you could get after having the treatment done, which nobody else had done with me.

I signed the consent form and then I was shown into another room to get changed, and came back out and obviously I was, I was probably in there for a good 40, 45 minutes plus, and she did struggle to do it because my cervix apparently is a bit weird and where it’s located, but she sort of persevered with it. Every time she kept me updated with what she was doing.

She constantly asked me if I was alright, if I was happy for her to continue. The nurses kept asking me if I was alright, and it was just a totally different experience. It was actually quite, it sounds strange, but we were actually all laughing and, you know, it was quite nice. We were laughing and joking, and it was just such a different experience.

Husband'
More relaxed.


Bev' It was yeah, definitely more relaxed. Which I think is, you know, because again I’d gone in thinking, “Oh God you know, if they’re not going to be able to do it, are they going to tell me I need this.” And it didn’t, you know, it just didn’t happen like that. So it was, in a way it was a great relief to myself to have it done, I was told after I had it, after I’d had it all done, they kept me sat in there with a glass of water, because obviously my legs were a bit shaky and being like that for a good 40 minutes.

And sort of after it was all done and I was dressed, I then got a different nurse who came in, took me into a separate room with settees and everything, and she actually went through all the leaflets with me, what I’d just had done, all my do’s and don’ts for the next six weeks, and everything else. So it was just such a different response and
treatment I suppose.

Husband'' From my point of view it was almost the difference between like an NHS hospital to a private hospital. You know, Hospital Number 2 was so much better equipped.

Bev' And that’s the other thing, you know, when you think they’re both NHS hospitals, they’re both within the same area, one hospital has, you know I won’t lie, it wasn’t easy for her to do, she changed speculums two or three times whilst doing the procedure, but you know she got on there and she did it.

Husband' And also from my point of view as well it was, again it was a relief that because I knew when we got there, and again it was, it was a completely different environment when we got there. They requested the patient questionnaire. You know, ethnic background, this, that and the other. All the usual stuff you’d expect. They requested that on arrival. And again it was just a completely different atmosphere. You know and ho

Emma had a LLETZ under general anaesthetic. She thought she might have cervical cancer as well as CIN3 and that she would find out after surgery. When she spoke to her consultant, though, he told her there had never been any chance of her having cancer.
 

If Emma and her mum had known before surgery that she’d had no chance of having cancer, they...

If Emma and her mum had known before surgery that she’d had no chance of having cancer, they...

Age at interview: 29
Sex: Female
Age at diagnosis: 28
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They took me back onto the ward and I stayed there for a few hours because I had to wait for the consultant to come round. And I did ask the nurses a few times what they’d done or what he’d done and things like that but they didn’t know and they couldn’t tell me. So I spent another few hours thinking, “Oh what’s he done? Has he done…?” you know.

Eventually they ended up having to bleep him and he had to come down and see me. And this is the one thing that annoyed me was, he came down. I find consultants, some consultants, very grandiose and above their stations and, to be honest, but he’s one of those and he sort of flitted in and I asked him, “I’d, you know, I just want to know what you’ve done?” He said, “Oh don’t worry, it’s all been removed.” Very, very blasé and, “Did I not tell you that it wasn’t cancer to start off with?”

And my mum, I remember my mum’s face just sort of dropped as if to say, “How? No. Because do you honestly think that we’d have gone through all of this.” And it was only actually when I got my results that we found out that he was actually a specialist, an oncologist, a gynaecological oncologist. Which we weren’t very amused about. And, you know, nobody ever turned round and said to me, not him, not the nurses, not anybody turned around and said, “It’s not cancer. We definitely don’t think it’s not cancer, or we don’t think it is.” None of them, because there’s no way that we would have worried like we did if we’d have known that.
 
So I think that annoyed us a lot, you know, just that little bit of information that he could’ve given us, that he didn’t, could’ve made all the difference in a way.

Some women who would have liked more information felt they should have been recommended reliable websites by their doctor or nurse. Women were particularly interested in information on CIN, CGIN, treatments, healing after treatment, follow-up care, pregnancy, and recurrence (see Information’).
 

Michelle feels doctors should refer patients to reliable websites and tell them about the...

Michelle feels doctors should refer patients to reliable websites and tell them about the...

Age at interview: 31
Sex: Female
Age at diagnosis: 30
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I think from the point of view of a patient, it’s probably, if clinicians could refer people onto the websites that are helpful, and also give them lots of information, and I think let them know that it’s very normal to be very upset and very distressed at this time. I think don’t downplay people’s fears in terms of their emotional well being because although it might not be a hugely serious problem in terms of most people have it and are cleared, follow up, and are fine, emotionally it can have quite a big effect for a long time. So I think if people could understand not to downplay the emotional side of it, then that would be a massive help to patients going through the process.

 

Emma wishes she’d been told about the Jo’s Cervical Cancer Trust website sooner. She has...

Emma wishes she’d been told about the Jo’s Cervical Cancer Trust website sooner. She has...

Age at interview: 29
Sex: Female
Age at diagnosis: 28
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If I’d gone to my GP or the consultant, or the nurse at the colposcopy, if they’d have turned around to me and said, “Hang on a minute, there’s this place called Jo’s Trust”, it would’ve been absolutely fabulous. But they don’t. And they don’t give you any information but I think at either colposcopy or prior to that, Jo’s Cervical Cancer Trust (www.jotrust.co.uk)  does need to be mentioned because they’ve been a lifeline for me. I just think they’re wonderful. And everyone that I’ve spoken to, I mean, I don’t think anyone I know doesn’t know about Jo’s Cervical Cancer Trust anymore. But I even said to my GP, “If anybody comes in having the same thing as me, please refer them to Jo’s Cervical Cancer Trust.” But then I shouldn’t have to tell my GP that, it should be out there anyway.

Sam, who changed to another doctor, also wanted more information, especially about why she needed several colposcopies but wasn’t being treated. She was 21 at the time and felt her new consultant took time to explain procedures while he did them and she could watch on the screen.
 

Being listened to, having a treatment plan and being treated like an adult was important to Sam....

Being listened to, having a treatment plan and being treated like an adult was important to Sam....

Age at interview: 22
Sex: Female
Age at diagnosis: 22
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The last consultant I had, who I’m under now, is absolutely brilliant. I feel so much better with him and over the last, it’s been the best six, the last six months have been just been brilliant at the moment, well it’s less than six months I think because I only got transferred end of April. So it’s only a couple of months but it feels like six months. It has, it’s been, I feel like a weight’s been lifted off my shoulders, I really, really do.

And how was he different from the first one?

I think the main thing is he actually sat and listened to me. Because before if I tried to talk, he’d [first consultant] stop me half way, and he’d say what he thought. This consultant, I actually sat there and I actually was able to talk to him about well like, “Can you explain to me why this is still happening? And what will happen after?” And he gave me a plan of what would happen, if it still comes back abnormal.

And that made me feel they really do want to do something. Whereas with others it was just biopsies. Come back in six months for another biopsy. Come back, do you know? And that might have been procedure to begin with anyway, but my confidence was there, just totally plummeted really badly.

And this new one, he just sat there and he spoke to me. There was no cutting off and turning round and talking to someone else as if I weren’t there. And the nurse as well, she was like loads better. Well she was trying to take my mind off having the treatment when I was having the treatment and she was just talking to me and asking me about why I’d swapped hospitals and things like that. So you don’t really try and focus on what’s happening, she tried to take your mind off it.

I think all in all the whole experience, well it weren’t great, it’s not the nicest thing to go through, but I’ve been through worse and it was just so much better. And when he showed me the screen, the screen was there already facing you. Whereas before they never even offered to let me see it or anything. It was always turned away. The nurse explaining bits and this does this, and this is your coil and this is, and then he put the dye on and he’s shown you the bit that was infected. And just to see it, I mean I didn’t think I’d really want to see it but it made me feel like, well it isn’t that bad. It feels like a massive thing but looking at it on the screen, it isn’t as scary as you actually imagine it to be. It was a much better experience.

So I think that’s been a major thing for me, actually being listened to and people talking to me and giving me the information and answers that I wanted.

Because you feel, because you’re young as well, you’re sort of, I felt like they looked at me as if, “Oh young girl being paranoid again,” sort of thing, “She doesn’t even know what she’s on about.” And that’s how I felt. I felt like I was sometimes being looked down upon as if I was a kid. Because I’m not thirty odd or something, and maybe if I was a bit older I might have got the answers that I wanted if I’d asked them, because sometimes I even took my mum or an older friend with me just so I felt like I’d got that more bit of confidence to ask the question. But it still never really helped.

He actually spoke to me like an adult, as if I could understand, because he knew that I needed to know. Because I told him how mad it was driving me and what a rough time I’ve had over the past two years. And I think he understood, and he gave me the answers that I want the best that he could.

 

Sarah was at university when she was diagnosed with CIN3. She felt she was being told off by her...

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Sarah was at university when she was diagnosed with CIN3. She felt she was being told off by her...

Age at interview: 35
Sex: Female
Age at diagnosis: 25
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They did the colposcopy. I think they might have had to send off for lab results. But yeah, I think maybe at the follow up of that, at the clinic, they might have said that. They said that I would have another smear test in six months time just to check to see if anything, you know, was going on. And that was about it really. I mean it was quite at arms length.

I don’t know whether it was because I was a university student that I felt a bit kind of not taken seriously. Almost sort of being kind of told off, you know, like you’ve got yourself into this position. You’ve got this which might lead to that, then, yeah it was, it did make you feel kind of a bit, not very nice actually.

Some of the women we talked to were disappointed because they felt doctors hadn’t appreciated the emotional effects of CIN / CGIN, including what it felt like for women to have an abnormal result and to be waiting for colposcopy or treatment. Several thought that some doctors could show more sensitivity, be less matter of fact, and should try to put themselves in their patient’s shoes.
 

Emma found the emotional effects of having CIN3 were harder to deal with than the physical. More...

Emma found the emotional effects of having CIN3 were harder to deal with than the physical. More...

Age at interview: 29
Sex: Female
Age at diagnosis: 28
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I don’t think health professionals and some people realise the emotional effect it has on a woman. And to be honest I think the emotional effect it has on a woman is more than the physical effects it has on a woman. You know, we’re not given all the information. We’re not made to feel at ease. We’re quite, on a few occasions you’re made to feel stupid for even worrying about it. And I know I’m not the only one in that, I know there’s lots of other girls, ladies on Jo’s [Jo’s Cervical Cancer Trust -www.jotrust.co.uk] that’ll tell you exactly the same thing.

It is very emotional and that is the main part of it. The waiting and the emotional side of it is the worst part, not the CIN, not the treatments. Not anything, you know, it’s all about the emotional side of it. It’s the way it’s handled. And it’s not handled brilliantly and it could be handled so much better, you know. They need more information out there. You need more sympathy, and you need to be more understanding of what a woman actually goes through when she finds this out. And it does need looking into a lot more I think, about the emotional side of everything. And not just sort of, you’re not, I felt like I was a cervix, not a person, if you know, that’s the only way I can describe it. You know, I was a cervix. They were treating the cervix and that was that. I’m not, they weren’t treating the person at all. You know, it was the cervix and that’s it.

Several women felt their appointments had been rushed and they were disappointed that they couldn’t ask questions at the end. A few said that each woman should be treated as an individual. One woman said the very busy clinic felt ‘like a cattle market’. Another said she felt like ‘a piece of meat’. Emma said she felt ‘like a cervix, not a person’. A few women wondered if female consultants were more understanding and approachable than male doctors. A couple of women said that there were students present during the procedure and, because the doctors were talking to the students, they felt slightly ignored.
 

Debbie was given very little information at colposcopy and felt rushed. During treatment, the...

Debbie was given very little information at colposcopy and felt rushed. During treatment, the...

Age at interview: 36
Sex: Female
Age at diagnosis: 24
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That really frightened me when I went in and had the initial chat with the chap at the colposcopy clinic. And he was so matter of fact about it, and didn’t really explain. It seemed quite rushed. It seemed that it was, there was such a big waiting room with people that were in and out, and I did feel a bit like I was on a conveyor belt, and he didn’t really have time to explain anything to me.

At the time there was the nurse, but there was also a practice nurse who was observing, and it seemed, although she was very nice, and the nurse was very nice, it did seem that it was all conversation between the three of them. I was a bit like the subject that was left in the middle. They were very pleasant, however they were talking amongst themselves. It seems, the focus seemed to be on explaining to this observing nurse what was going on, without actually addressing me.

So I was listening to what they were talking about. When I was trying to ask questions about what they were talking about when he said, the doctor said , “Oh no, I don’t see anything.” They started having a conversation about that; I said “Oh sorry, what does that mean? You don’t see anything? What? Why?” And he said, “Oh I’m just going to go ahead and do the treatment.” I said, “Wait a minute, why are you going to go ahead and do the treatment if you can’t see anything?” But I wasn’t really spoken to about it.

I think he knew that I was, well he knew I was confused because I told him I was confused, and said, “I really don’t understand what you’re telling me.” Had he taken time then to explain what he meant, that might have put my mind at ease. Or had he just not said anything, and just said, “Yeah, we’ll investigate and see what there is.” Because as it turned out there wasn’t anything there anyway. So I was possibly needlessly worried about something that wasn’t there.

If there was more information available about what he was talking about, because when he told me, and the words he used were, “Glandular Extension.” So the first thing I did when I got home was to go onto Google, which is the worst thing you could possibly do because, good grief, you come up with all sorts of nonsense. And that’s what I Googled and I couldn’t find anything. And then I found the website with this confidential medical panel, so I wrote to them.


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Last reviewed July 2017.

Last updated July 2017.

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