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Cervical abnormalities: CIN3 and CGIN

Hysterectomy

Although LLETZ or a cone biopsy are the most common treatments for CIN2 and CIN3, occasionally, if a LLETZ or cone biopsy is not appropriate or the woman has additional gynaecological problems, a hysterectomy may be advised. This surgery is performed under a general anaesthetic and involves the removal of the cervix and the uterus.

Rachel and Patricia decided to have a hysterectomy because they were worried about having cancer in the future. Rachel also had abnormal bleeding after a cone biopsy for CIN3 and CGIN.

 

Rachel decided to have a hysterectomy because she didn’t want to worry about recurrence or have...

Rachel decided to have a hysterectomy because she didn’t want to worry about recurrence or have...

Age at interview: 36
Sex: Female
Age at diagnosis: 35
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It was end of July and I went to see him in his clinic. And he said that, although the results had come back clear, because I’d got CGIN, they couldn’t rule out, although I was showing clear margins, what he said was the clear margins can show and they only, they basically check for a two millimetre clearance. But because of the nature of the abnormality in the first place, he couldn’t rule out that there were clear margins and then I would have then CGIN somewhere else within my womb.

And so then, due to me having the problems that I’d been having with periods, he thought it was in my best interests to have a hysterectomy. And plus also I’d completed my family. I had a choice. I didn’t have to have the hysterectomy. And I thought well this will save me worrying every six months. Thinking, “Oh my gosh it’s going to come back, or it’s not been detected in the first place.” So I had a hysterectomy three days later.

Again it was all very, very quick. Now the problem I’ve got is I’d just applied for a new job as well and I’d got it. So I had to go and see them and explain that I was due to have a hysterectomy and would they hold back the start date, and luckily they said yes. So I went in, like I said, three days later, and had the hysterectomy.

 

Patricia worried about having a recurrence or cervical cancer before every follow-up appointment....

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Patricia worried about having a recurrence or cervical cancer before every follow-up appointment....

Age at interview: 55
Sex: Female
Age at diagnosis: 38
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I went back I think after another six months. Each time before I went for a follow-up appointment, I would be in a state of panic again. So after six to nine months maybe of regular testing and regular observation, and because of my level of anxiety, really out of proportion, I don’t know whether I should have been worrying that much, but I certainly was.

I suggested to him that I had a hysterectomy, because I had two children and I was in my late thirties. And I said to him, “Surely it would make sense, in order to stop the very regular testing, to go and have a hysterectomy.” And he actually agreed fully, you know, and I wondered why that was and why he hadn’t suggested it himself. And I thought well maybe he can’t, maybe policy dictates that I have to say that to him.

So I was booked to go in for a hysterectomy, which I had, and I had my uterus only removed, I was advised.

Everyone feels differently about having a hysterectomy and this can depend on many factors, including age, diagnosis and whether a woman has children. Lynne was diagnosed with CIN3 when she was 55. At a follow-up appointment, further abnormalities were found. Having a hysterectomy did not worry her because she had already had children and had been sterilised.
 

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A hysterectomy is a very emotional and upsetting experience for some women. Janet hadn’t had children and realised she was pregnant only when she was diagnosed with CIN 3. Having a hysterectomy and losing a baby was devastating and she had depression afterwards.
 

Having a hysterectomy was traumatic because Janet had always wanted to have children. She felt...

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Having a hysterectomy was traumatic because Janet had always wanted to have children. She felt...

Age at interview: 49
Sex: Female
Age at diagnosis: 37
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I was only thirty six or thirty seven. It was absolutely horrific, you know, when everybody around you is getting married, having babies, and I’m having an operation. I’m aware that it can affect women, young women just as much as older women. It was to me like a lady who’s 80 sort of operation, and here I was, planning to have a family, and I had to have a hysterectomy. It was awful. Absolutely horrendous.

Well the whole thing, it’s just like a nightmare, it’s just unbelievable. Anyway I went in reluctantly. I was very, very reluctant to have the operation. It took a lot of people just to persuade me to go in. Because basically, it was so final. And I was quite annoyed because they seemed to totally overlook the fact that I wasn’t informed that my eggs could’ve been saved. And that made me quite angry because nobody seemed to be concerned about that. All they wanted to do was get the operation done, finished. It needed radical surgery that’ll fix it.

…I think it’s a very traumatising experience and I think that you come to terms with it but you never quite ever get over it. It’s caused me to get quite depressed.

Melanie was diagnosed with cervical cancer after treatment for CIN 3. She decided to have a hysterectomy rather than a radical trachelectomy (where the surgeon removes all of the cancer but leaves the internal opening of the cervix) because she felt it would be the safest option for her. She knew that she didn’t want to have children in the future.
 

Melanie had to choose between having a hysterectomy or a radical trachelectomy. She spoke to her...

Melanie had to choose between having a hysterectomy or a radical trachelectomy. She spoke to her...

Age at interview: 29
Sex: Female
Age at diagnosis: 29
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He [consultant] then gave me an option of having this trachelectomy or a hysterectomy.

I was a bit cross and a bit annoyed that he gave me that option, and that I had to think about what I was going to do. But weighing up the pros and cons and just wanted things getting out of me, and I just wanted the cancer going. And I’ve never wanted children, and he said that if I had two children then the trachelectomy wouldn’t have been an option. So for that reasons really I decided to go for the hysterectomy.

My family – I always speak to, my mum and my sister are like my best friends, so I just talk to them about everything. But when my mum did find out, she came back off holiday. I mean everybody that I spoke to really was sort of, you know, we can’t make the decision for you but they took into consideration that I’ve always said I don’t want children. And my mum was very much, “You don’t want children, now you’ve never wanted children.” If this is going to be, you know, to get shot of things, then she was more supporting the hysterectomy more than anything. Well more than anyone as well, she was, I think she was pushing for that more. Yeah.

So you went back and told the new consultant and what happened at that appointment?

He said that I had to be 110% sure. He said if there was anything, he said if you’re only 99.9% sure that you don’t want children, then I’d be offering you the trachelectomy. But then at that point you see, I said to him, “I want the hysterectomy. I’m 100% sure.” And then that’s where they started saying, not, but then, they himself was leaning more towards the hysterectomy, does that make sense what I’m saying?

Because he was like, then he starts telling you, oh if you’d have the trachelectomy something or, I can’t remember what he said but it was like, okay, I’ve definitely made the right decision to have the hysterectomy. Oh that was it; he was telling me that if I’d gone for the trachelectomy and if there’d been any chance of reoccurrence or anything like that, then it would be more difficult to operate. So I came out of that appointment definitely knowing that I’d made the best decision with having a hysterectomy.

Women described what happened when they went into hospital to have a hysterectomy.
 

Rachel was anxious about having surgery because she’d never had it before. She didn’t...

Rachel was anxious about having surgery because she’d never had it before. She didn’t...

Age at interview: 36
Sex: Female
Age at diagnosis: 35
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How did you feel on the morning of going for the operation? Because had you ever had any surgery before?

I had my wisdom teeth out when I was 18. No I’d never had any surgery. I was absolutely terrified and I’m not good with hospitals. I had both my children at a local hospital. It wasn’t a big one, no big machinery or anything like that, it was, you know, all carpeted, so I was absolutely terrified, I really was.

And I was in the ward, and the anaesthetist came round and explained to me what was going to happen. She had a look at my hands and said that, you know, what kind of veins I’d got. And said what she was going to do, because I said I was absolutely petrified about the whole procedure. I wasn’t good with needles, anything like that. And she was really good.

And then the consultant came round as well, and told me what he was going to do. And it was okay. And I was second; I was told straight away that I was second on the list. I think I had to be in for 10, and I went down at one o’clock. And so they, although there was a little bit of waiting around, it went so fast. There were other people there that I’d met through the counselling session two days before. So I kind of built up a couple of friendships in the hospital.

...I remember being taken down for the procedure, and I was shaking that much about having the anaesthetic; the worst thing for me is having the needles put in my hands. And I was scared that I wasn’t going to wake up. And I wrote [partner’s name] a list of all, everywhere, you know all the health insurances and everything we’d got in case I didn’t come back.

And I remember going down and I was so sad and there was this little baby coming back the other way, who’d obviously just had a procedure. And I thought, “Oh gosh, you know don’t be so stupid. Little children can have horrible things done, and you know, you can do this.” And I remember being, lying there and they tried to put the, is it the canula into my hands and give me the anaesthetic, and they couldn’t find my veins. And they put a saline flush through and I was shaking that much that I was actually lifting off the table, that in the end they thought it was only kind to put me out using gas. Which is what they did. And obviously I just remember waking up.

 

Melanie went into hospital by herself and felt, with hindsight, that it might have been easier if...

Melanie went into hospital by herself and felt, with hindsight, that it might have been easier if...

Age at interview: 29
Sex: Female
Age at diagnosis: 29
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I think it was about, gosh, a quarter to three in the afternoon they came for me. And took me down to theatre and I had, the old consultant was the first person I saw down there, who again was lovely. Gave me a big hug, very reassuring.

And then they took me into the theatre room and that’s when things, well that’s when I started, I just broke down in tears. I can remember just lying on the trolley in absolute gusts of tears. But by that time you’re in there and it’s very, very clinical isn’t it? And nobody’s really got time to waste in being….so they just stabbed my arm and put me to sleep. I was in tears when they put me to sleep. I can remember looking through the door and seeing the consultant there, but that’s it, gosh. That was a horrible, horrible, yeah that was horrible. Out of everything, that was the worst moment ever I have to say.

What would have helped in that moment?

I don’t know, I don’t know if it would have helped me taking somebody with me, who could’ve come in, who could have come down there. I think that probably would, I think looking back now really I should’ve asked [partner’s name] to come. Even, just to keep, you know, someone to talk to whilst I was waiting to go down. But just to go down to theatre with me, just to hold my hand I think whilst I was there.

Because, like I say, that point when I started crying, the nurses just took over and it was a case of , “Too late now love, sorry.” Oh yes, so definitely gosh if ever I have anything like that done again, I’ll take somebody with me. I don’t care how upsetting it would be for them to see me going to sleep. I don’t care about that. I’ll just take someone with me.

So the next thing you remember is coming round?

Yes. I can remember waking up down there, much better coming round than when I had my anaesthetic for the LLETZ, there wasn’t the coughing, the spluttering, which I was quite pleased about. Because obviously at that point having my belly wounded which would have been awful. But I came round, they was very lovely and then they took me straight up onto the ward. And I was all dripped up, and just kept coming in and out of, just asleep.

Most of the women we spoke to felt tired immediately after the operation. They usually had a catheter, (a small tube put in the bladder connected to a small bag to collect urine), drainage tubes from the wound, and morphine to help with pain. After a day or so in hospital they became more mobile. Moving around helped to ease some of the initial pain women experienced after their operation.
 

Walking was difficult at first but gradually Melanie could do more for herself. Within a few...

Walking was difficult at first but gradually Melanie could do more for herself. Within a few...

Age at interview: 29
Sex: Female
Age at diagnosis: 29
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I was sort of doing a bit more in hospital over the weekend; obviously getting up for the first time was horrendous. I think I spent 30 seconds in the shower, that’s all I could muster. But again the nurses was lovely and always there to help. But then I can remember on the Saturday I started doing more, and by Sunday I’d walked downstairs and gone to the canteen. When my dad came to visit, we went down there for a cup of coffee rather than stay on the ward. And then the Monday came home and then things slowly got better from then.

So what were you recommended, you know, what to do to look after yourself when you got home?

To rest, obviously keep mobile and things. Take the painkillers that I was taking. I was only taking paracetomol and Ibuprofen. I wasn’t taking anything else. And just rest and, from talking to everybody, they just, everybody said you feel like you want to do more, and you can do more, but realistically you can’t. And I can remember [partner’s name] had a week off, so I just sort of stayed either in bed or just on this couch. I think I certainly didn’t go very far.

And for six weeks I wasn’t able to walk the dogs and if I did too much I knew about it at night time. I think after the fourth week I was pulling out that television and oh, that night time I knew I was, that I done too much. Then that was when I gave myself a kick up the bum really and just said, “No, I can’t keep doing that.” And just slowed right down and, it’s only just recently, last four weeks, three weeks I’d say, that I’m getting back to my usual routine. I can take the dogs out now, which is good and, yeah so the last four weeks I’ve been getting back to normal.

Women were advised about recovery when they were discharged from hospital. They described how, at first, they rested as much as possible and, gradually, were able to do more while at home. They advised other women to rest as much as possible, even though they may feel well enough to do more.
 

After 2 weeks, Rachel could walk a bit more. After four weeks, she could do more around the house...

After 2 weeks, Rachel could walk a bit more. After four weeks, she could do more around the house...

Age at interview: 36
Sex: Female
Age at diagnosis: 35
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The first two weeks I really didn’t do anything, I’d probably go for a walk, kind of. I went for a walk every day, but literally 100 yards, then it was 200 yards. I’d say after the first month I was more able to do things like I was then at home with two children both under five. I couldn’t lift them. They got used to it. Not being, asking Mummy to pick up because she’d got a pain in her tummy. I mean they knew, you know they knew, they were really good actually. Oh, I can’t stress that enough, they were brilliant.

I’d say four weeks I felt able to kind of get on with my life again. Six weeks I was fine yeah, I was fine. And I went back to work after 8 weeks. But I know I was actually supposed to be off for 12, but I’d just started a new job so, I couldn’t kind of put it off any longer. They’d been anxious for me to start.

Ideally would you have liked the 12 weeks?

Yes. Yes, because mentally it takes a, you know, because obviously the physical side of it where you’re, you can’t lift, you can’t do anything. But the mental side was a lot worse. I think I said about, although I’d got my family, I hadn’t got those issues that I’d lost my fertility, you know, oh my gosh I’m never going to have children. I was very, very lucky that I’d completed that part of it.

But I wasn’t expecting how I was going to feel as, I felt less of a woman, I don’t know why. I think, I really don’t know why actually. I just did. And I felt that I had to make more of an effort, that I had to, you know wear more make up and I wore high heels. I’ve never worn high heels in my life. I’m a trainers girl. And I felt that I had to make more of an effort to feel more womanly. To, you know, I don’t know whether that was anything to do with hormonally, or whether that was just me perceiving it the way I did. I don’t know.

 

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It can be difficult for people living alone. Sandra’s family lived abroad but took it in turns to...

It can be difficult for people living alone. Sandra’s family lived abroad but took it in turns to...

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You need a little help because I live on my own; I have no one here except friends. All my family are abroad. And I could’ve coped a little better, and have a little assurance in my mind if I have somebody here.

It doesn’t have to be a long day like, only things that you need them to do, maybe to bring a little shopping. Or to give me something to eat, or help me from the bed or so, assist me to go to the toilet or to run my bath, or to help me up the step, to walk me up. To get me to do my bath, and bring me down. Just my changing clothes, someone to wash my clothes, in the machine right here. But when you’re so ill you can’t even think of these things. You can’t think of the outside world at all. And I was deprived of that.


...My family had to come all the way from abroad, one lot from Florida, one lot from Canada, New York, Trinidad. And they took it in turns to help me. So if I didn’t have family, I don’t know what I would have done.

Most of the women we spoke to felt that having a hysterectomy had been the right decision for them. Many had a smooth recovery and said that, once they were feeling better, they were glad to get back to work. Although most of the women we interviewed recovered well from a hysterectomy, some experience short or long term bladder problems. Janet developed bladder weakness after her hysterectomy and needed to take nightly medication.

Some of the women we talked to said the whole experience had made them look at life differently.
 

Patricia was pleased she had a hysterectomy, especially because more CIN was found after surgery....

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Patricia was pleased she had a hysterectomy, especially because more CIN was found after surgery....

Age at interview: 55
Sex: Female
Age at diagnosis: 38
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Were you happy with the decision that you made?

To have the hysterectomy?

Yes.

Definitely, yes. Definitely. In fact I didn’t have any problems with it actually. I mean the fact that my ovaries weren’t removed maybe was a good thing because I didn’t have the menopause. I wasn’t menopausal at that time. And I didn’t have to go on to HRT or anything like that.

So I was booked to go in for a hysterectomy, which I had. And I had my uterus only removed, I was advised. And when they got to there, they did discover more CIN on the biopsy, which again scared me because I thought if they hadn’t taken it out, where would I have been? So they said, you need to come back again and continue to have vault smears.

In that year after the hysterectomy, I still was in a huge state of anxiety. Finally there were two clear smears, and that was it. And gradually over the years following that, my level of anxiety subsided. But at no time was anything invasive found. I don’t know what statistically the chances are now. I wouldn’t have thought it was very much really after that amount of time. So yeah, I think I started to relax after a couple of years.

 

Melanie wants to make more time for the people that matter to her. She stopped smoking before...

Melanie wants to make more time for the people that matter to her. She stopped smoking before...

Age at interview: 29
Sex: Female
Age at diagnosis: 29
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I certainly have more of an attitude now of, I’m going to make me happy and I don’t really care very much for the consequences on other people. Which sounds really shallow and really nasty when you say it like that. But, before, I’ve always been very much, constantly worrying about what other people might think of you, constantly trying to be there for other people. And going through this, it’s sort of made me realise who I can rely on, and who are my friends. And I don’t need to rally round for everybody anymore and constantly go to their problems, because they haven’t done that for me. And I know who matters to me, and who don’t. And I’ll be looking after me and those who matter.

Have you looked at any of the areas of life in a different way, because some girls, women, said that they changed their diet or they were smoking before and they stopped, you know, all those kind of things…?


I have stopped smoking, but the thing is I’ve never really been a smoker, I’m more of a social smoker. But I did stop smoking. I stopped smoking the week before I went in for the hysterectomy. Because when I went for the anaesthetic and for the LLETZ and I woke up and I was coughing and spluttering, and that was absolutely horrendous. I didn’t want to go through that again. So I packed up the Tuesday before my, the week before, and I’ve not started smoking again. So that’s something I feel quite pleased about.

And I’m also trying to get healthier. And I’m more determined to try and be fit because when you look at, you know, you read all these things and people tell you well this can lead to cancer, and this can lead to cancer, and I don’t, you don’t know whether it does or not. But I certainly, you know my outlook like that has changed. I want to get healthy, and I do want to be healthy. And I want to be around really. I want to be around to see my niece and my nephew grow up. And I want to go out on more walks with the dogs, because I enjoy it and it’s going to help me stay fit.

 

Rachel appreciates life more now and feels lucky to have her family. She was pleased her...

Rachel appreciates life more now and feels lucky to have her family. She was pleased her...

Age at interview: 36
Sex: Female
Age at diagnosis: 35
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I definitely appreciate my life. It sounds silly saying that, because obviously I appreciate life, but I realised how much my life meant to me. I realised how much my children meant to me and my family. And obviously my partner. I don’t take things for granted any more at all. I remember a lady posting something about, if you’ve got children and don’t do this, you know, be grateful, and it made me really think, really think, gosh I am really lucky you know. Although sometimes they don’t sleep and they’re naughty, I am so grateful that I have got my family and that, you know, that it just means so much to me.

And simple things like when I walk to work, I’m like really, really pleased about my surroundings, just being able to, you know, really appreciate where I live and where I’m from. And I just don’t take, I just feel extremely lucky that I’m here to be honest.

I think that I’m grateful that I had CIN3. And I think thank goodness I got caught, thank goodness I was put, thank goodness I went for screening. Thank goodness that I was put on the system; I was going to be monitored. That was such a relief to me knowing that they’d found something and I was going to be monitored for the next 10 years. I haven’t got this, you know, I’m going to be looked after for 10 years. I know that if they find anything it’s, you know, I’m going to be treated straight away. I knew that was, you know, that was always there. So that was a relief as well.

Women still need follow-up if they have had a hysterectomy for abnormal cells. The cervical screening test (smear) will be taken from the top of the vagina, near where the cervix was. This is called a ‘vault smear’. Very rarely, the abnormal cells can come back in this area, so women are offered cervical screening tests (smears) at six months and one year after their hysterectomy. If everything is fine, they won’t need to have any more cervical screening after that (see ‘Follow-up care’).
 
More experiences of hysterectomy can be found on our Cervical Screening and Cervical Cancer sites.

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Last reviewed July 2017.

Last updated July 2017.

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