Cervical abnormalities: CIN3 and CGIN

I was also talking to my partner, because we’ve not been in a relationship long when I started bleeding, well we wasn’t. Our relationship at that time wasn’t serious, back in September when it all started happening. We were sort of, I’ve known him for years and years and years through another friend, but yeah he’s been, he’s fantastic. And he’s just sort of somebody you can talk to about anything. And when I was Googling the erosion of the cervix, he was down here with me at 3 o’clock in the morning just Googling away and trying to find something. So I do speak, I have spoke to him a lot. Yeah, he’s fabulous.

Did your relationship become more closer or…?

Definitely. Definitely. Yeah I mean I’m currently just moving in here now and that’s, I think if this hadn’t have happened, then we certainly wouldn’t be moving in together as quick. I mean we’ve only been seeing each other really since October. But we have grown very close. It’s very, absolutely fantastic. And, to be honest, I have kept quite sane throughout this, and I have dealt with it all fantastically I think. But I don’t think I would have dealt with it as fantastically if it hadn’t have been for him. I mean I’ve had my mum and I’ve got my sister and they’ve been fabulous. But if it hadn’t have been for [partner’s name], I don’t think I’d be as sane as I am.

On the first treatment I was in a long term relationship. And, you know, I’ve always been very, very open. They knew about it and that was fine. The second time I had treatment I wasn’t in a relationship, so that didn’t come up. My current boyfriend, he’s aware of the history. And he’s obviously, you know, he just wants to make sure that I’m okay.

I wasn’t allowed sex for a few weeks, so the annoying thing was that I’d met someone else and we met in the August. And in September, I think it was September, I got sterilised. Then in the November I had something else done, and it was all like, “Don’t have sex.” Oh I think it was the biopsy, you know, “Don’t have sex” again. And then it was this, and it was, “Don’t have sex” again. And I went, oh I’m in a new relationship, this is really awkward.

We got through it. We’re still together now.

So did you talk to him about it?

Yeah I did.

And was he quite understanding or…?

I think he was a bit worried.

Did he find it hard to understand?

Well he never had taken account of women’s problems before in that sort of respect, but, I don’t know I’ve never actually really asked him. He’s in the kitchen. Do you want to ask him? I don’t know. I mean he listens all the time, and he’s very reassuring and comforting.

But I think at the time I didn’t actually, I didn’t go to, I went to more depth with my children than him, because obviously it was a new relationship. And it looks a bit strange doesn’t it? “Oh well I might have cancer.” “Oh why have you got cancer down there?”

It’s a bit, you know, not knowing enough about it, and you know. It’s hard. I mean obviously he knew that my ex-partner had cheated on me and stuff like that, and I’d told him how it all happened.

I turned away while he [doctor] was doing the treatment, but my partner watched him do the treatment. So when we got back home he was like, I think he helped me more because he knew what I’d been through, because men can be sort of….He never knew what to say and we’ve only been together two years, and this started just before I met him. So all our lives, all our relationship, it’s been based on this worrying stress and everything. So I think he finally understood as well.

It’s good that he’s been there from the beginning, if someone had come in half way through and I’d have had to try and sit down and try and explain. But he’s also one of those people that you don’t know what to say, or you know if I cry or something, he’ll just sort of sit there or he’ll put his arm around me but he won’t say anything.

So I do think even going to the hospital’s been brilliant because we can actually sit and talk about it now, because he knows what’s going off.

My husband didn’t really understand it actually. He’s very much of the ignore it and it’ll go away school of thinking. So the less you know about something, the better. And it’s not going to happen. So I think he found it quite difficult to deal with me with my worries about, “My goodness why has this come back for a third time?” Which was another question I asked the consultant. I said, “Why has it come back?” And I think it’s quite unusual to come back the first time, but to come back twice. And he said, “Oh we don’t know, it just happens.” So I couldn’t really explain.

My mother-in-law is a nurse, so she’s has no sympathy for anyone [laughs]! She was lovely, she gathered all these leaflets. The whole family, the whole side of their family is very stiff upper lip, lets not talk about it. So there wasn’t a lot of talking about it. But she did gather some leaflets from her surgery to give to me. Which was very thoughtful. Although I did explain I have been through it before, I do understand. But I find that actually I was explaining it to her, a lot of what was happening, that she didn’t really understand.

So, yeah, but that was, I think that was more, I spoke to her in order that she could speak to her son, because I’d said I don’t think my husband’s very happy talking to me about it and he feels a bit that he shouldn’t really talk about it. So I asked that she would maybe talk to him about it, so he would have a better understanding. Because every time I tried to explain it to him, I could see it just wasn’t going in. It wasn’t registering with him.

I mean he was very concerned; he was very good, and very supportive in his own way. And that’s it really. I don’t think there’s, I don’t think I was particularly supporting anyone else, and I do think my husband did try to support me but perhaps without knowing what he was doing or why he was doing it.

I think his [husband’s] concern was, so going back to the wart virus, he was thinking, this is what we’ve discussed more recently actually. He was thinking, “Oh my goodness, have I carried this wart virus and given it to my wife, you know?” Girlfriends before he met me. And that went through his mind, and that’s what caused another difficulty at the time

So he’s thinking he’s caused it?

Caused it. So there’s a blame factor. And that would be awful, you know. I would never think that it was, yet in any case if it was even, would it really matter? It’s happened, you know. It’s quite a common thing.

I suppose from that point of view, it probably has changed me a little bit from that perspective. I was worried for ages afterwards, for about two or three weeks anyway, and the first time we did [have sex] I was drunk. We probably, it was like having to start all over again really. I had to get a little bit tipsy first of all, and then that was okay.

I didn’t actually go back to see him [doctor] actually because it was after my first time of having sex that it, and then the bleeding started again. That was a bit nerve wracking. And I did, I think, and I still, I’m a little bit like it now but, because I think it’s just, you’re so much more conscious of what’s going on down there now, you know. I’ve seen diagrams of what little bits are and where they are, and stuff like that. So it does feel a bit different now. But I think it’s getting better as time goes on.

I felt worried and I thought, “Oh God what if it’s, you know, having a negative impact, and what if it gets infected or whatever.” And I didn’t really feel that much into the whole thing maybe because I don’t know, some time, yeah I’d lost a bit of spontaneity and fun. But I guess the more time passes, the better it gets again.

So at first you felt that even having sex felt different?

Yeah. Or not…

Or it was more how you felt, you were worried?

It was more in my mind I think than really how – I mean I didn’t have any pains or anything. I just thought that I might and then, it felt more like something that I had to do rather than I wanted to do kind of. I didn’t spontaneously really chose to do it. But it’s good to get your life back and well get, you know, your relationship back on track.

So now it’s better. It is much better now. I don’t think about it as much, so I don’t know, it’s almost like it’s at the back of my mind.

After the month, and after I’d stopped bleeding, no it [sex] was fine really. And I think, had I not been with my partner, I might have been a little bit more, but because you know I trust him so much, that was fine. But obviously if I was single, I think I would probably feel a bit differently, particularly because that’s how this whole problem came about isn’t it, from simply not having the most suitable partner. But I don’t know, you know, it was quite easy to get.

I remember one funny thing actually, I did tell him that I couldn’t have sex with him for 18 months as a joke, and he believed me, which I should have kept up. But I didn’t.

No I was told obviously that there was to be no intimacy for 8 weeks, no 12 weeks I think. I hadn’t have dared anyway to go near, no way. And I remember the first time we got intimate afterwards, it was very scary. I kept checking that I’d, we’d not, that things were okay, and that there was no bleeding, you know. All that kind of thing. And yeah, it wasn’t particularly enjoyable, I’d say. And even now I find certain things quite, oh painful. And I have been back to see the gynaecologist and he said that’s because of the scar tissue and it will get better.

But there’s ways around kind of, you know, there’s certain positions basically that I find too uncomfortable, and basically yes it’s down to the scar tissue.

I did have, I would say that, I mean he’s been very supportive about the whole procedure and he was absolutely terrified when he found out that I’d got pre-cancer, or cancer as they thought at the time. He was quite, you know, you eat lots of fruit, lots of dark berries, that type of thing. He thought that he could kind of beat it that way. And he’s been very good. He knows what I’ve had to deal with and he’s been really, really good about it all.

And I think it has affected him, yes because obviously I’m not exactly, what can I say, I just don’t find sex particularly enjoyable at the moment. Which is obviously hard. But, sort of for him, I have been told it will get better and that is what I’m hoping. You can still be intimate in other ways though, you know.

I had sex just over four weeks after my treatment, and I did maybe twice, and then obviously I had bleeding again. And I haven’t had sex again since then. And now I’m really scared because I don’t want it to get worse again. And so I’m kind of like, I don’t know, I’m just like, oh my poor boyfriend. But still I just, I’m really, really worried about it because I don’t want to kind of knock anything, or like make it bleed again. I don’t know if that’s bad for you, or if your body does just kind of like, it’s like getting a scratch anywhere else and then it just gets better.

And it just kind of makes it all a bit weird. It must be a bit weird for your boyfriend to kind of like, I don’t know. I think it didn’t really worry me so much straight after the surgery, but because I had that little bit of bleeding again, now I’m just like, “God.” I’m just going to wait and wait and wait as long as I possibly can, until my boyfriend’s walking out the door. And I’ll go, “Okay, okay, okay, we’ll see if it’s okay.”
 
Is there anything you would say to anybody who’s in the same situation now? Is there any message or advice for someone in the same situation? Because lots of people did say they worried about these things obviously.

I don’t know. I would really love to know if other people have had that kind of slight bleeding after their first time they had sex, and maybe that’s alright. Because my doctor was like, “Yeah it’s fine.”

But yeah. I don’t know. I just think some kind of, you know, it’s the stuff nobody likes to talk about. But like a slightly more informal fun version, which is like all the stuff after CIN3 treatment that you didn’t want to hear. It’s good to know actually that other people get a bit worried about that. It is a bit weird though and you’re just so paranoid that you’re going to make everything worse. It’s like they’ve done surgery there and you’re kind of like, “Oh, uhuh.”

Has your boyfriend been quite supportive? Or you’ve generally just got on with it and talked to female friends or….?

I feel really sorry for my boyfriend. Because he’s been so good about it, but so good I’m almost like, “What’s the matter? Why aren’t you trying something?” So I could say, “No I can’t. I’ve just had surgery.” But he’s been so good, and it’s kind of making me wonder, like “Why are you so fine about this?” But it’s just because he’s being very, very nice. And I’m sure it’s quite…

It’s funny because you kind of think that boys aren’t going to be bothered about that, but they’re not that heartless. They probably are concerned that you’ve just had massive treatment, and are you feeling alright and hope you get better. But in your head as a girl I think you’re like, “Oh my God, we can’t have sex for six weeks, they’re going to leave me.” But no, he’s been pretty good.

I think it’s kind of weird for him as well just because, I guess he asked me questions that I can’t really answer. But I think he’s had like a whirlwind lesson in female anatomy and all of the things that can go wrong.

I think it did affect me in as much as I was scared to have sex. I was scared to have another baby. I’ve got a big age gap between my children. Me and my husband have been together a long time but we’ve got a seven year age gap because of this. And that was down to me.

I was terrified. I was imagining all sorts because I wasn’t worried about conceiving because I’d asked that question and they said you should be fine. I was worried about the actual physicality of giving birth, and what would happen to my cervix, and how would it all happen and work and what would happen if it all went wrong and,

Well most people after an operation like that for CIN 3 do feel wary, and scared even, of having sex again?

Yeah, I was.

You’d had a further thing to contend with, which was the haemorrhaging, so, it’s quite understandable that

It was, it was. Yeah. It did.

….and you know what if something goes wrong, or if you’re injured in any way.

That’s right, and I was, it did affect things on that subject. And it took me a long time to get my confidence back. I mean, you know, you’re talking a good couple of years to get my confidence back. I was scared every time I did it.

Yeah, that’s understandable.

I was really scared. Yeah. And, you know, that it might hurt, and everything.

Was your husband quite understanding, because he was still quite young?

Yeah he was at first, but when, you know, those early days after, I think you know anybody would be. But then, you know, after a while it did sort of wear a bit thin with him. And I do understand that, but then again we were quite young and perhaps I should have gone and got a little bit more help.

I should have gone back to my GP or even the nurse. And that’s actually where my help came, a year later, routine smear, screening, smear test. The nurse just said something like, “Is everything okay?” And I said, “Well actually…” and that’s when she said, “Look it’s absolutely fine. You’ve got to relax. It’s all done and dusted. Everything’s fine.” A little bit of reassurance, so don’t be afraid to ask for help.

I was only 39 and it affected my sex life because, I can’t remember at the time, but you know Freud’s theory about women’s clitoral orgasms being separate from their vaginal, you know. And I don’t remember what it was but there was an Australian doctor at the time, he was doing a lot of research into this. And it was pretty obvious to me that a lot of nerves had been damaged, and I just couldn’t reach orgasm after that. It came back, years later, partially. It wasn’t the same though. It was never, sex was never the same, no. No. So it’s not something I would recommend someone unless you know, well I didn’t have a choice.

I didn’t have a choice. And I didn’t know, well nobody said that that might be a possible, even if they knew, it was in 1984 I suppose. I mean it’s common sense now, isn’t it, that obviously if you’re going to have a huge chunk of your cervix removed, it’s going to affect you.

If you think about the clitoris and all the nerves that come from it, you know, and all, I mean it’s so obvious that it would do. If you’re going to cut through these nerves, but I think the body compensates and I think that actually you know, things return or you know you compensate in other ways. But it definitely did have a big effect.