Cervical abnormalities: CIN3 and CGIN
Human papilloma virus (HPV)
Human papilloma virus (HPV) is a large family of viruses that affect the skin and mucous membranes that line the mouth and genital area. HPV is a very common virus with over 100 different strains. HPV infection causes changes to the cells of the cervix creating abnormalities such as CIN and CGIN. Because of this HPV is thought to cause 99.7% of cervical cancers*1
The types of HPV that can cause warts, genital warts and verrucas are known as ‘low risk’ strains and do not usually cause cell changes or develop into cancer. Some types of HPV can cause changes in the cells of the cervix or the lining of the mouth and throat. They are known as high risk HPVs. The changed cells have an increased risk of becoming cancerous. It is thought that 13 strains of high-risk HPV’s are responsible for causing cervical cancers*2 and of those strains those known as types 16 and 18, which are the most common, are thought to cause over 70% of cervical cancers*3.
Nearly all sexually-active men and women get HPV at some point in their lives -80% (four out of five) of the world’s population will contract some type of the virus once.*4 HPV is transmitted primarily by genital-to-genital sexual contact, anal sex and, occasionally, oral sex. It can also be transmitted from same-sex partner to same-sex partner. Infection with HPV does not imply either infidelity or promiscuity as even people who have had sex with only one person in their lifetime can get it.
The body’s immune system will usually clear HPV up, without the need for treatment. Since there are no symptoms for HPV, most people don’t even know they have contracted the virus. The virus can remain suppressed in some people for long periods of time.
Because HPV can be carried for a number of years without symptoms, lesbian/gay women who have previously had sex with a man, or whose partner or previous partner(s) have had sex with a man, remain at risk. Lesbian/gay and bisexual women are therefore encouraged to come for routine screening appointments.
Most women who have HPV do not develop cervical cancer. However, a small number of women do develop abnormal cells that may become cancerous. This is why cervical screening and HPV vaccination is important in helping to prevent cancer.
Most women we spoke with had never heard of HPV or CIN/ CGIN. Many read more about it after their diagnosis because they wondered how and why they’d got CIN/ CGIN. They would have liked more information about it and other possible causes. They felt it was important that there was more awareness and more information about HPV and how it causes CIN.
A doctor explains what HPV is and that CIN might be prevented by not smoking.
The high risk Human Papilloma Virus is a sexually transmitted disease. It’s terribly, terribly common, and almost anybody who has had sex has been exposed to it. So it doesn’t, it’s not a mark of promiscuity. It doesn’t mean that you were unhygienic or anything like that. So I suppose, by extrapolation, because we know that HPV causes CIN, you could say that CIN is sexually transmitted.
We know that CIN is caused by the wart virus, the Human Papilloma Virus. The high risk Human Papilloma Virus. Now this is not the same virus that causes genital warts. It’s a slightly different virus; it’s of the same family. It doesn’t cause any visible abnormalities. The thing with high risk Human Papilloma Virus is a lot of people are exposed to it. But most people manage to clear it with their immune system.
The things that increase the risk of CIN or cervical cancer is smoking, because that affects the immune system in the cervix and leads the Human Papilloma Virus to persist and cause the abnormal cell changes which can then develop into CIN3 or cervical cancer. So if people want to know what they can do to protect themselves, I think stopping smoking is the single most important thing.
Does diet or anything else come into it? Women often ask can I make changes to my diet or anything else?
I think there’s no direct evidence, but certainly a healthy diet just helps to keep you well, helps to keep your immune system in good check and therefore it’s just generally good advice. You know, alcohol in moderation, no smoking, and a good healthy diet. And going for your screening when you’re called.
Many of the women we talked to said that they hadn’t realised that CIN was a condition that was sexually transmitted. Some were wary of telling other people they’d had it because of this and because it affected a private part of their body. Many felt there was a stigma attached to having HPV and this made it difficult to talk openly about having CIN/ CGIN. Some said that other people often related it to promiscuity, but stressed that women diagnosed with CIN should not feel embarrassed or ashamed because HPV is such a common virus.
Rachel says women shouldnt feel ashamed if they have CIN or cervical cancer. She dislikes the...
I’d say that there’s a stigma attached to cervical cancer and CIN, and pre-cancer. That you are promiscuous. And a lot of the websites, when you read about the causes of CIN and cervical cancer, it says, there’s a few things it’s like smoking, being on the contraceptive pill, being promiscuous throughout your sexual life, being promiscuous.
And it makes you think, it makes you feel a bit dirty. It’s like, and I think it has been known before as like the dirty cancer, and it’s just simply not true. It’s so not true. You can catch HPV virus from one sexual encounter. You don’t even have to have sexual intercourse. It’s from genital to genital contact, so if people look down on you and think that you’ve been a bit, you know, you’ve been sleeping around, it’s just simply not true. And I think that really needs addressing.
I think it’s, you know, I think ladies feeling ashamed that they have pre-cancer of the cervix or cervical cancer is just absolutely disgusting. I just don’t think anybody should be made to feel like that at all. It’s awful. And that there is a stigma attached to it, there definitely is. You know, you sometimes feel ashamed to say well I’ve had like pre-cancerous cells of the cervix. Because people think you’ve been sleeping around, and it’s just so not true. It’s so not true.
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.
Lucy was shocked to hear that HPV had caused her CIN3. She felt embarrassed and blamed herself...
CIN3, yes and HPV, which in my case is what had caused, we think, CIN to develop, which was a bit of a shock really because nobody likes to think they’ve picked up a virus along the way. And, you know, you don’t know where it’s come from and you wonder, “Will my partner blame me? Or have I got it from him?” And it’s a difficult thing. That’s something that I don’t really think about a lot because you feel dirty and you feel that it’s something that nobody wants to think about.
...I felt embarrassed because of the HPV. And I did feel a little bit, not as if people were judging me, but I do feel that it was entirely my fault. And I think that I could’ve prevented what I had by being a bit more careful when I was younger. But I think events go on and you can’t change the past and can’t blame myself really. Yes I can but, and I think you have to think that people don’t judge you. And that the healthcare professionals, they don’t look and think, well this was caused by that, therefore you know that lady’s different to somebody else.
Most of the women we interviewed told close family that they’d been diagnosed with CIN3 / CGIN. Some also told friends and colleagues (see ‘Telling other people’). Because of its link with HPV, several women said they found it difficult telling their parents and a few were surprised at their negative reaction. Other women said they didn’t tell many people because they felt embarrassed or that other people would judge them.
Anna says there is a stigma attached to HPV. She felt her mum thought she might have been...
I read on the internet some of the causes and the HPV virus and that sort of thing. And you kind of see it on the TV as well, and that causes it. And that was one of the things that was a bit difficult because, you know, my mum thinks that, you know, I’ve been a woman of loose morals. And that’s a really difficult thing that’s, that’s kind of a bit of a stigma about it.
And I know that another friend of mine who, a few months after me, she had a diagnosis with mild, CIN1 I think. And she moved abroad and had her mail directed to her mum, so she only found out about that from her mum telling her. And then her mum gave her a right lecture. And so it’s kind of got a bit of a stigma attached to it.
Some women we talked to said that, at first, they were concerned about how to tell their partner because HPV is sexually transmitted.
Anna said telling her partner about HPV was a bit tricky. He wondered if he could catch it from...
How did you feel about the whole HPV thing?
Well that was a little bit of a tricky one because my boyfriend was going, “Well what is this? Have you given it to me? Have you…?” And it was actually when I first, when I had my first abnormal smear which showed minor changes, and I went to the doctor and I said, “So what is HPV? Is it an STD?” And she said, “Well it’s not really.” I said, “Okay, so what is it?” And she said, “Well you, you know, you contract it from having sex.” And I said, “So that is an STD?” She’s like, “Well,” and again it’s quite difficult. I think it’s, I still can’t really explain in my mind what it is.
And I was saying well can I pass it onto my partner? And she said, “No.” But then I don’t know how, I still don’t understand it because obviously it can because that’s how it gets passed around.
So do you think there should be more information?
Yeah. Because I mean I’ve read about it until, you know, till the end of the earth and I still don’t quite get it. Because it seems that it’s something that you can pass on. You can pass it on even when you do use protection, can’t you? Because it’s just skin contact.
So anyway, so that was a bit of like a tough one to tackle with my boyfriend, because he was saying, “Well have I got it, have you given it to me?” And I said, “Well to be honest, you know I might have got it from you.” But again we’re not, well is it an STD or what? So. Yeah that was a bit, that was a bit of a funny one. But again he wasn’t really, I think he was obviously a little bit concerned by it.
Natalie felt nervous before telling her husband she had CIN3. She didn't know how she'd got it...
I called my husband that evening and explained. And I was a bit nervous to tell him because I didn’t know how I got this, and was wondering if it’s something I had done. And I still don’t quite understand how I got this.
And that, you know, sort of that’s okay with me because it’s gone now. But I was a bit nervous and he was asking me questions, well he was sort of, “How are you?” And then he was going, “But how do you get that?” And so I didn’t really understand how I got that. I heard about the Papilloma Virus and I learned that, even though I’d had regular smear tests that, not all the NHS, when they do it, they don’t always check for that. And I still don’t quite understand how that works. But yeah that was my concern, that I had done something that had given this, you know, had given me this illness.
I remember asking when I went to see the doctor, the gynaecologist, and asking like what, “Have I done something?” And he reassured me no. But that he thought it might be sexually transmitted. And I thought, I’ve been so un promiscuous. I’ve been such a monogamous, careful, sexually careful person that I just thought, you know, using barrier methods. I just thought how could I have got this. And I still don’t quite understand how, but I did. Despite all my caution, but you know, that’s fine.
Lizzie and her husband read more about HPV on the internet. He was concerned how she might have...
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?
Many of the women we interviewed said they didn’t know how they’d got HPV, several stressing that they’d had very few relationships and sexual partners. Pam wondered if she’d got CIN3 because her ex-boyfriend, who’d cheated on her, had had many partners.
Pam wondered how she got HPV. She was pregnant when she was sixteen and her ex-boyfriend had...
All I was told was that, obviously that I had to explain my situation, and they said to me it might just be the fact that I’d had a change of partner. I was also told that, obviously I went and I looked on the internet as well. And I remember reading that it could also be caused by having early sexual relationships or children early.
Now obviously I was pregnant at 16 and had my child at 17, so you know I started to think is it that?
Then I also found out that men who’ve had multiple partners can give it to you, and I knew he’d had a bit of a history. And that’s why I panicked and then I started to think, “Oh well it must be his fault. It must be his fault.” You know I’ve been clear for so many years, in a monogamous relationship; it’s got to be his fault.
I did, and there were obviously periods where I would sit here and absolutely, I was going to swear then sorry. Just sit here and cry and just think, “Oh my God,” you know, “Have I got cancer?” You know, and the blame, just the blame, thinking it was my ex-boyfriend who had given it to me. You know just the anger of that. And not knowing what, if I did have cancer, whether it could actually be treatable. You know and stuff
Lynne said that, after her marriage of 28 years broke up, she ‘went off the rails’ and had several short-term relationships. With hindsight, she wondered if these had caused her HPV or whether emotional stress could also play a part.
Lynne had been with her husband for thirty-five years. When they broke up, she had a few...
I couldn’t believe it. I couldn’t, I really couldn’t believe it. And it was just a bit of a shock really. This is why I didn’t really want it to go, video’d or anything. But when I was married for twenty eight years and I was with my husband before that, so we were together for thirty five years when we split up. So I’d only really ever been with him.
Some of the single women we talked to said they were now more concerned about having a sexual relationship and would be particularly wary of having sex without a condom. While latex condoms offer protection against sexually transmitted infections (STI’s) spread by bodily fluids, such as Chlamydia and HIV, they are much less effective against infections that can be spread by genital-to-genital contact such as HPV. However, doctors recommend using a condom because it may reduce the risk of HPV and is very effective against other STI’s.
Helen is concerned about getting HPV again, even if she and a new partner use a condom. She feels...
I’m really concerned, I know I use a condom all the time especially with someone new. I think one of the reasons I was so persistent with the smear as well was partly because I had worked in a cancer charity … also because I have slept with somebody who I found out later had a lot of partners, and that was a concern for me. And so I think now, yeah, I’d be a lot more worried about it, a lot more. It’s hard to say careful because it’s so easy to transfer, even if you are safe you could still… so I guess, I’m not sure.
If I was going to get into a long term relationship and the other partner wanted to sleep with me without a condom, it would be nice to know that I could have him tested for it first, just because I wouldn’t want to have to go through that process again.
I think I find it quite surprising that it’s sort of not talked about as an STI at all. But it is really. I guess in some ways it’s a good thing because there’s a stigma attached to talking about STI’s, and there’s not a stigma attached to having abnormal cells at all. But it is essentially that. And I think that by increasing awareness of that might actually help, and I guess, maybe just make people think twice, be more careful. I don’t know.
And then when no-one tells you, “Oh it’s skin on skin contact,” it’s so easy to transfer it. No-one thinks, “Oh I’m worried about HPV.” No one even knows what it is. So I think I find that quite strange and it might be better if it began to be treated as that, so people are worried about the risks.
Some factors, like age of first sexual intercourse and having more sexual partners, can increase the chances of catching HPV. But many women who have their first sexual intercourse later in life, or who have had few sexual partners, have HPV and may go on to develop CIN. Other risk factors include smoking, and some studies suggest long term use of the contraceptive pill (over ten years) can slightly increase the risk. Some women said that, after reading more about the causes of CIN or cervical cancer, they decided to make changes to their diet or lifestyle. This included eating healthier, exercising, drinking less alcohol and stopping smoking. One woman said she’d also started meditation to help her relax more.
Sam had abnormalities for nearly two years. Her doctor recommended she stop smoking. She and her...
He [consultant] did shock me in a way because he says, “Look you need to quit smoking,” he says, “because it’s not going to help you at all.” Which I sort of knew it wasn’t, and then I felt well they blame everything on smoking. You’ve got a cough and it’s smoking. You’ve got this and it’s smoking sort of thing. But it did sort of give me the jolt I think that I needed.
And I thought, “Oh I’m going to do anything I can to just end all this.” And I can remember, sort of well, he [partner] didn’t have much choice because I said, “Right, if I’m stopping, you’re stopping.” And I can remember we quit on our own for a week. And by the end of that week, I think we were really on edge. And I thought, “Well if I don’t get some sort of help, we’re going to end up smoking again.” And I think in a way I wanted to do it, just to prove that I could do it. Sort of go, “Ha, well I’ve done it, so well you do your part sort of thing.”
So I rang NHS Direct up, and we went to, it’s just around the corner I think actually. We only went a couple of times, and she’d talk about why you want to quit smoking. Well we really, really wanted to do it. And the different ways, and we went on the patches. My partner he was only on the patches for three weeks, and I think I was on them for six.
And we only went to a couple of meetings. I mean you could phone any time you want or anything, but we didn’t need that much help. I just knew that we needed something. And you could go every week, and blow into the tube thing, and if it comes up as zero, they know you’ve not been smoking. So that sort of makes you want to do it as well. You want to get to that zero, sort of thing. So, that was brilliant and we’ve not, I was on the patches for six weeks, and we’ve quit for nine months now.
A few women said that, especially when they’d just been diagnosed, they did not want to know how they got CIN / CGIN but just wanted to be treated. Others said that, after treatment, they wanted to resume life as normal and did not read much about the causes.
Jos main concern was being treated and healing well. She only wanted more information about...
I think, certainly at the time, to be honest I didn’t really care. I don’t know if that’s too strong a term. But it was just like, this happened, you know. I want the treatment, how do I go about making sure I heal quickly.
It’s only been in the last sort of three years I guess, two or three years, that I started having a look on the internet and actually, you know, looking at different schools of thought as in, if you’re sexually active, does that increase your chances of having problems. Not eating green vegetables. You know, potentially could that contribute to your vulnerability of that.
So yeah it’s only really been in the last couple of years that maybe I’ve looked on the internet about it. But again it’s only really been where I have had a recall for unclear results or, you know, where I’ve had the second lot of treatment.
Some of the women we spoke to asked to be tested for HPV. Others were concerned about the HPV vaccine.
The HPV vaccine provides protection against two high risk types of HPV (types 16 and 18) that cause 70% of all cervical cancers (NHS Choices September 2014). Women need to be vaccinated before they come into contact with the virus. The virus is transmitted by skin-to-skin contact, usually by sexual activity. Studies have already shown that the vaccine protects against HPV infection for around 10 years, although experts expect protection to be for much longer. (NHS Choices September 2014).
Different countries have different policies. The HPV vaccination 'Catch Up Programme' started in the UK in September 2008 with all 12 to 13 year olds and 17 to 18 year old girls being offered the vaccine. This programme continued until autumn 2011 to ensure all girls under 18 years of age were offered the HPV vaccine.
As there is currently no medical treatment for HPV, being vaccinated against it and practising safe sex by using condoms is the best way to reduce the chance of infection.
A doctor talks about the HPV vaccine, who is eligible for it, and its aims.
This is a vaccination that protects young ladies against, there’s two strains, two common strains of the high risk Human Papilloma Virus. The HPV 16 and 18. It’s available on the NHS to girls aged between thirteen and eighteen. And I think it comes as three vaccinations. You get one at time zero, one two months later, and one six months later. And it’s been shown in tests to offer good protection.
Now it’s important to remember that it doesn’t protect against all the Human Papilloma Viruses, so these girls should still go and have screening when they get to the age where they’re eligible for screening. But I think it’s a good idea. And I think it’s ensuring good protection and, over time, should lead to a reduction in the rate of cervical cancer by the order of, people are quoting between 50 and 80%.
Some of the women we talked to said they didn’t know who was eligible for the HPV vaccine or when it had to be given. A few said they would have liked more information about it and felt strongly that that their daughters should be vaccinated. All of the women we spoke with advocated the HPV vaccine apart from one. Some wished it had been available when they were younger.
Pam found out about the HPV vaccine from her mum. She was concerned about when her fourteen-year...
The other good thing is that my fourteen year old, I mean my mum was looking on the internet and she, oh I think she heard it on the radio and then looked on the internet. And it was something about this injection for teenagers, to the parents, well the mothers had cervical cancer or whatever, or CIN1, 2, 3, whatever, and I looked into that. I spoke to my GP and my GP said yes, she can get it done privately for about four hundred and fifty quid.
And I thought, “Well I haven’t got four hundred and fifty quid. But this has to be done.” I made further enquiries to find out that the school are implementing it. But at this stage in her life, it doesn’t, it’s not her year group. And it won’t be next year, so it won’t be till the next, the following year. Now the only comfort I can get from that, knowing that my daughter is sensible and I know one hundred and fifty percent that she will not engage in any sexual activity before she’s probably 30! No, she wants to be a lawyer, she wants to be, she’s very headstrong, she’s very intelligent. So I’m hoping she’s, so long as, because there’s something about, that’s what apparently it is, they have to have the injection, and it has to be before they’ve had sex or something.
So I mean she knows all this, so hopefully it’ll be next year she will get the injections and she’ll get them for free. But I don’t think that’s good enough. I did ring the school and said to them, “You do realise I’ve literally just had CIN3.” And they said, “It’s out of our hands. You can get it done privately but she will get done before she’s 16.”
Since April 2011, the NHS Cervical Screening Programme has been introducing a testing system called the ‘HPV triage’ so if a woman has a screening result that shows abnormal cell changes the sample is automatically tested for the HPV virus.
“If you have an HPV infection, you will be offered another test (called a colposcopy) to check your cervix more closely.” (NHS Cervical Screening leaflet, ‘Helping you decide’, May 2017)
“In the next couple of years, primary HPV testing will be rolled out across England and Wales. This means that they will test the sample of cells for HPV first. If HPV is found, they will then test for cell changes.” Cancer Research UK June 2017
For more information on colposcopies see our topic on ‘The colposcopy examination’.
If the test comes back and it does not show any HPV virus (negative result) the woman will be asked to return to normal regular screening every 3-5 years depending on their age. ‘HPV triage’ programme is currently operating in England and Northern Ireland but not in Scotland or Wales.
In England, Northern Ireland and Wales all women between the ages of 25 and 49 are eligible for a free cervical screening test every three years. Women aged 50-64 are eligible for a free cervical screening test every five years. Women living in Scotland between the ages of 20 and 60 are invited for a test every three years.
The NHS Cervical Screening Programme has also introduced a ‘HPV test of cure’ programme which means if you have had treatment (such as a colposcopy, LLETZ or cone biopsy) for cervical abnormalities/CIN, you will be asked to go back after six months for more screening. The sample taken at this screening will be tested for abnormal cell changes (CIN) and it will also be tested for the HPV virus. If the screening result shows either the HPV virus or abnormal cell changes the woman will be again referred to colposcopy for further investigation.
‘HPV test of cure’ is available in England, Wales, Northern Ireland and Scotland.
*1(Walboomers JMM et al. (1999) Human papilloma virus is a necessary cause of invasive cancer worldwide. Journal of Pathology, 189 (1), 12–19).
*2 Li N et al., 2011. Human papillomavirus type distribution in 30,848 invasive cervical cancers worldwide: variation by geographical region, histological type and year of publication. International Journal of Cancer 128, 927–935.
*3 Bosch FX et al., 2008. Epidemiology and natural history of human papillomavirus infections and type-specific implications in cervical neoplasia. Vaccine 26 (10), K1-16.
*4 Koutsky L. 1997. Epidemiology of genital human papillomavirus infection. The American Journal of Medicine, 102 (5A), 3-8