Sarah - Interview 19

Age at interview: 35

Age at diagnosis: 25

Brief Outline:

Sarah was diagnosed with CIN3 in 1999, aged 25, and treated by LLETZ. She has had no problems since then and has been clear for around ten years.

Background:

Sarah is a married counsellor Ethnic background / nationality' White

More about me...

Sarah attended regularly for cervical screening since going to university and, when she was close to finishing her degree, had an abnormal result. She was given another smear test by her GP and, when that was unclear, she was referred to a colposcopy clinic.

At the clinic, Sarah was told that she had HPV and to attend for another appointment later. HPV is usually cleared (without treatment) by the body’s immune system, like other viral infections such as a cold. Sarah said that, because her experience was some time ago, she found it difficult to remember exact dates. At a following appointment, possibly two years later, she had another abnormal smear result and was diagnosed with CIN3, aged 25. At her next appointment, she was treated by LLETZ. Sarah said she had her first abnormal result in 1995 and was diagnosed with CIN3 in 1999. She was told that she had CIN but was given very little other information.

After treatment, Sarah had six-monthly follow-up appointments. After two normal results, she was given annual follow-up appointments and is now being screened every three years on the NHS Cervical Screening Programme. Since being treated, she has had no cervical problems.

Sarah encouraged other women who had been diagnosed with CIN3 to talk about their experience with friends or family, to get the support they need, and not to feel embarrassed or ashamed because they’ve had HPV.

Sarah feels that women often don't like telling people they have CIN3 because it is caused by HPV...

I suppose more awareness of it [CIN3] would help. I think maybe there’s a couple of reasons why, and one is because it’s a gynaecological thing, so it’s very personal, it’s very intimate. I think the other thing is because it’s got an association with the HPV virus, that people think like, “Oh I had, I had a virus and, you know, an STD, and like oh that’s caused it.” And I think that partly causes people to hold back on it.

And also then if that, in young women sort of twenties and thirties, they may be changing partners and then, you know, they’re like, oh they don’t really want, I mean I’m sure they tell their partner, but they don’t actually want to discuss it because it’s embarrassing to them. You know it’s sort of, I suppose a stigma in some way. But, you know, it’s a virus; it’s like anything else really.

...You could’ve been with your partner for years and have got it. And it is just, yeah, I think that’s probably one of the biggest reasons why, in my age group, women wouldn’t, are uncomfortable talking about it.

It becomes, you feel sort of like it’s a judgement of your morals and how you live your life. And, you know, its almost like saying, “Oh you’ve had loads of partners,” like it’s a judgement of that. And by having loads of partners, that’s something bad as well. It’s this whole sort of social judgement on you, yeah. And like they want to just pigeonhole you. That’s it, yeah. It’s almost like people want to pigeon hole you. Oh you’ve got that because of this, this and this. Therefore, yeah. Definitely in my age group, and definitely like at university, you get that kind of sort of quick to judge, because the first thing a lot of people would say would be, “Oh how did you get that?” And it’s like, “I don’t know.” If we knew that, I think there’d be a cure a lot earlier, wouldn’t you? Yeah. It’s like I don’t know, I’m not a doctor. Yeah I think there is a lot of judgement going on about people’s morals and how they live their lives.

Sarah now has three yearly cervical screening and always attends. She felt reassured by having...

I had to come back six months later and have another smear. And then when that was clear, I’d come back a year later. And that would happen for three years in a row. If everything was fine, which it was, then it went to, it went from one year to three years. And everything’s been fine since then, knock on wood.

I’m just waiting for my latest. I just had a smear so yeah, and that would have been the second of the three-year ones. So, hopefully, well a few minutes of uncomfort, it was
worth it.

I’ve been sort of given, yeah clear, never had a call back on any of my smears. And attended all my smears and actively, you know, was aware that I needed to go.

….The worst bit is, when you’re going through it, is you don’t, because you have to go back every six months and then you have to go back every year, and then it’s three years. You always feel like you’ve kind of got these goal posts, and they’re getting moved as you get closer to them.

But that’s, to me that was just positive. That’s like sort of making sure, you know, not just doing something and then that’s it, you’re fine, you’ve had your treatment, off you go and good luck. That’s, to me, that was really good follow up care and that meant that all of a sudden my cells wouldn’t change and I wouldn’t know because I hadn’t been to the doctors for my three yearly smear. They looked after you and checked regularly and that was actually good.

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

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.