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Smear confusion, CIN 3, please please help. So scared.

(32 Posts)
LegArmpits Mon 26-Nov-12 10:40:41

Please help, apologies if this is long.

I had a smear test, results August 2011 were abnormal. Was only mild changes so waited a year (my choice) then went to colposcopy in September 2012. Consultant couldn't see any area that needed biopsy so just took another smear. I've today received a letter saying abnormalities were present in smear and I would need treatment.

So I phoned and they were reassuring but have terrified me further. Apparently the new smear is CIN 3, so rather than doing a biopsy they will just treat me with LLETZ. I have to wait until the end of January for this as I can't make the end of December appointment.

I'm just terrified. I could cry. I'm level headed usually but due to a bad experience in my twenties, it's my one big fear and I just think I'm going to go to pieces.

Am 38 with three beautiful young children. No symptoms.
Please please hold my hand. Please.

AppleYumYum Sun 28-Jul-13 23:03:25

I have had CIN 3 twice. Many pap smears and many colposcopies and biopsies in my time. First time 2005 and I had a wire loop excision, it was done under a local and I walked over to the large reclining chair in my gown, the local made my heart race and legs shake, but the procedure didn't hurt at all, she cut a coin sized piece out. It was just me and my gynaecologist and maybe a nurse.

Then a few years later I had another CIN 3 result, this time I had some sort of laser procedure as the area was smaller. I was offered a general if I liked but said a local would be fine as last time it was no big deal. It was very different, I had to be prepared and transferred onto a trolley with a hairnet on, wheeled up a corridor and transferred on to the table, there seemed to be about 15 people in what was more like an operating room. I think all the people in the room and the fuss being put on a trolley and even being offered a general made what was really nothing feel scary.

Anyway, am rambling, just wanted to say I've had clear smears ever since. It is a very slow thing to develop, hence 3 yearly smears are standard. I know once you know you just want it dealt with and out, but not much will change in a few months though the prolonged worry isn't nice hmm.

I have my own thoughts that stopping taking the pill not long after the second CIN 3 for me made my lining stronger to fight it off, I'd been taking all sorts of Yasmin style pills etc due to acne and had had bleeding after sex, a very thin lining and cervical erosion. Chin up, it will be fine, it's all booked in and will be sorted out, and you know how quickly Christmas always comes around. And stay away from google.

rmidd84 Sun 28-Jul-13 22:44:37

Thankyou that sounds less scary the doc who I saw was not very helpful there was no explanation or leaflets given to me so I was just confused and scared thanks again x

holidayseeker Sun 28-Jul-13 22:23:03

rmidd84 no it does not mean you have cancer it means that you have pre-cancerous cells which if left could possibly turn into cancer but often takes many years.

The lletz will be similar to the colposcopy but at the part when they are looking through microscope they will also cut away at the abnormal cells to remove them. I have had this treatment twice, the first time I had quite a large amount of cells removed and afterwards I did feel sore like I had given birth and had a discharge for a few weeks afterwards. The second time I only had a small amount removed and I had no pain at all so I guess it all depends on the size of the area that is treated to how you will feel.

This is common so please do not worry even though I know that is easier for me to say. The high risk hpv is a virus that around 85% of the population get however most people fight it off however those who don't are the ones who have these abnormal cells If you are high risk then I think it will mean that they will just maybe be more cautious with your treatment but once you have had the lletz then once the abnormal cells are removed hopefully your body will then fight off the hpv.

rmidd84 Sun 28-Jul-13 19:51:40

Hi was wondering if anyone could offer advice and or support, im 29 and have had problems for years with bleedingvand pains, in 2003 I had my first smear which showed abnormal changes I didnt have another one til 2008 which also came backvabnormal so had to have 6mthly smears until april this yr wen I said I would like further tests so I had a colcoscopy wen I got there they said I had severe changes and high risk hpv which I dnt no wot that means neways had the colcoscopy which was extremelypainful and made me bleed for 5 days she said it looked ok n if anything wudvinly show cin1 wel I got a follow up appointment were the doc sais something showed up quite serious which needs immediate treatment he didnt say what until I asked and he said cin3 ivjus got my letter through saying I have to have lletzvand I just dnt understand whats going on and what happens nowand does this mean I have cancer? I also have lots of pain and bleeding with smears plz help

digerd Tue 27-Nov-12 20:45:47

I was in a large ward, and was the only one having that op, most of the other women had hysterectomies.

The black cervix was discovered before I had the ops, and the clinic nurse said it needed quaterizing. It was 18 months after my last smear when they informed me that they had found abnormal cells and to make an appt to see them urgently.

It never returned and I never worried about it doing so.
My daughter was worried as once she had an abnormal smear, but had a repeat one after 6 months and the cells were back to normal.

BelaLug0si Tue 27-Nov-12 20:18:01

Well the LLETZ is arguably better than the cone was/is. It can be done in outpatients, with local anaesthetic and home a short while later.

The black could be due to the use of silver nitrate which is sometimes used to stop bleeding (chemical cauterisation), it makes the skin look black or blue.
Carcinoma in situ is the equivalent of CIN3 now - the terminology has changed quite a bit since 1992. In 1996 national guidelines were introduced standardisation across the NHS.

digerd Tue 27-Nov-12 19:21:20

Thanks Bela
I thought in 20 years procedures would have changed for the better.
Apparently, I have an awful scar that healed wonky - german doc looking down his nose at it 3 years later. I have not been able to find why my cervix was all black when called back to the clinic. After the first biopsy, I had a letter stating that the whole of the rim was full of displasia grade 4, and that a bed had been booked for me in the next few days for the cone biopsy, to have it removed and take further biopsies to see how far it had progressed. It was also called Carcinoma In Situ, on my records at GPs.

BelaLug0si Tue 27-Nov-12 18:16:42

Hi digerd
A cone biopsy is slightly different to a LLETZ; with a cone the tissue is removed using a scalpel instead of a loop and tends to be more tissue taken than a LLETZ. Cone is less often used now because the LLETZ was developed so that's taken over as the main method of treatment.

digerd Tue 27-Nov-12 14:57:22

OP

Just looked it up on google, and my CONEBIOPSY 20 years ago is now called LLETZ, so is exactly what I had done. Although we stayed in hospital for 8 days then as the anaesthetics were much more unpleasant in those days.
It said you will bleed for about 3- 4 weeks while it is healing - too long ago for me to remember, but varys depending on how far up the cervix they have to go to eradicate all the abnormal CIN3 cells.

Do not worry, I remember only worrying about having to have a Hysterectomy, which was mentioned to me as possible.

But I did have a previous biopsy on the detection of my cervix looking black, to determine the stage, and in those days it was with a GA. I had the 2 ops in 2 weeks. But was not as bad as they thought, as did not need a hysterectomy.

BelaLug0si Tue 27-Nov-12 14:19:24

Hi
The cells being further up won't necessarily make them more difficult to treat, it could mean a slightly larger LLETZ. That sounds alarming but is actually only millimetres different in reality. It does depend very much on your individual situation so it's something to discuss with the colposcopist about treatment - I can give only examples and give general idea of how things work.

LegArmpits Tue 27-Nov-12 09:57:37

Hi Bela, thanks. Can I ask, if the cells are further up would this make it more difficult to treat? Am in a right old state.

BelaLug0si Mon 26-Nov-12 22:32:50

Hullo
If the colposcopist was more worried they would somehow fit you in earlier usually.
Can I suggest you read information on the colposcopy website here and bsccp.org/index.asp?PageID=30.
Colposcopy does give a good look at the cervix, there are still limits (up the endocervical canal) which is why they've taken a cytology sample that came back showing severe dyskaryosis. At this point LLETZ is the treatment offered. The other posters have eloquently put how they found it. All I can add is that it is bearable, the recovery is fairly swift but you're likely to feel out of sorts for at least a week.
It's a very small % of severe dyskaryosis that turn out to be cancer at the time of the LLETZ being examined, and even if they are cancer, the vast majority of these are very early and do not need any further treatment.
Another place for support is Jo's trust. It's for women and their families dealing with pre-cancer and cancer of the cervix.

Hope you get on ok and get a cancellation.

LegArmpits Mon 26-Nov-12 21:24:36

It must be said, Eastenders and whiskey helped for half hour then.

digerd Mon 26-Nov-12 14:54:08

30 years ago, I had a general for the biopsy and another general for the conebiopsy. Think they've changed the names, as I was also told I would need a stitch if I got pregnant which would have to be taken out before giving birth.
I remember laughing after the op when a nurse came to change my bandage, as I said " what bandage?", then she proceeded to take out a seemingly never ending length of bandage out between my legs just like a magicians hat trick. !!
I was so surprised as hadn't felt anything inside me.
I had no pain either.

They were so worried about mine then, they told me I would probably need a hysterectomy - which I didn't.

spiderlight Mon 26-Nov-12 14:25:37

Copying this from another thread:

I had widepsread severe dyskaryosis (CIN III) four years ago and I am fine. I had to have a colposcopy (much like a long smear test where you get to see your own cervix on a screen), a couple of biopsies that I barely felt, and subsequently two loop excisions six months or so apart (most people ony need one - trust me to be awkward!), but as they said to me at the time, even at my severe level it would have taken another ten years for the abnormal cells to turn into cancer. It's horribly scary but you're in the system now and they can sort it. It's those who don't go for smears and don't have it picked up at this stage who end up with cervical cancer. All my treatment was done with the utmost sensitivity by absolutely lovely, kind, gentle medical staff, and while it wasn't exactly what you'd choose as an afternoon out, there was very little pain or discomfort involved. I'm still on annual smears but my last three have been clear and I think after next year I'll be back to normal three-yearly.

It's horrible though, especailly teh waiting, so you have my massive, massive sympathy <holds hand>

LegArmpits Mon 26-Nov-12 14:14:36

Yes, I'm going to speak properly with DH about this, as I'm unsure. I just want it over with.

midori this is what confuses me. I thought the whole idea of Colposcopy was so they could get a good look at it. And it all looked ok...

midori1999 Mon 26-Nov-12 14:07:37

I would personally need to phone. In fact, I did phone and my appointment for two weeks time was brought forward to that afternoon. Luckily I managed to get child care.

One other thing is that the person doing the colposcopy can get a good idea of whether its very serious by looking it seems.

I know it's easier said than done, but try not to worry, you're being seen now.

LegArmpits Mon 26-Nov-12 14:00:04

Thank you so much for your stories and reassurance. It really does make me feel a little better and it's SO SO good to talk. I'm really angry with myself for potentially letting it ruin our Christmas too, so I need to find a way of dealing with this I think.
I keep thinking it would be worth phoning for a possible cancellation, but December is always a bit bonkers with school plays and stuff, and also the worry of the results would still be there, so I think I'll wait it out. Also makes it easier as the kids and DH are off then anyway.
Bloody hell. What a shitty Monday!

melnich Mon 26-Nov-12 13:52:15

Hi, I don't often post here but thought I would as this is exactly what happened to me about 4 years ago. One more story of a happy outcome will hopefully help you!
I had CIN3 cells found at a routine smear (after I had been putting off going for a couple of years, silly me). I had the LLETZ procedure done a couple of months later, like you around Christmas time. I was so naive about the whole thing I even took my 2 yr-old with me, and luckily some lovely nurses looked after him for me while I was on the couch. The procedure was quite uncomfortable, but not too bad. I had to come back some months later for a check-up, but in the meantime they checked the tissue they had removed and all was fine. I now have to have smears every year until 10 years has passed.
As other respondents have said, CIN3 does not mean you have cancer, just that if left untreated it might go on to become cancerous. So all that's going to happen is they will remove the CIN3 cells, check they've got them all and that's that, life will continue as normal!
Please try not to worry, and don't let it spoil your Christmas.

ihearttc Mon 26-Nov-12 13:39:13

I had CIN 3 when I was 27 (8 years ago now). I had a regular smear and had no symptoms or problems at all either so I can totally relate to how you feel being told that.

I had a Colposcopy and Loop Diathermy (which I presume is LLETZ) and then had to have 6 monthly smear tests done and then yearly ones for 3 years and have now gone back to the normal smears (am due one now so need to make an appointment).

I didn't tell my parents either so I really do know where you are coming from. The way it worked as well my yearly smear tests always ended up being just before christmas so I never enjoyed christmas that much cause was always thinking "what if..." but 8 years and 2 children down the line I have had no problems touch wood.

LegArmpits Mon 26-Nov-12 13:30:30

Yes, this is another thing that I find (for want of a better word) interesting, is the HPV testing. I've read masses of stuff on it over the last year and its very confusing. I asked the consultant at colposcopy if they would test for HPV but apparently not.

You're right re not knowing the exact outcome until biopsy/LLETZ and this is the thing that is haunting me, but of course as you say, equally it may be 'better' than CIN3. I know that the odds are very slim and I'm sure things will be ok, but it doesn't stop me tormenting myself. The fact that they were willing to not see me until end of January is also strangely reassuring, but it just seems a long wait. I'd really come around to thinking that the results were taking forever due to everything being ok, so it's come as a bit of a bolt from the blue, stupidly.

The other thing that is bothering me (at risk of outing myself!) is I find it impossible to tell anyone other than my DH about it. It's like a brick wall. I initially had to cancel the December appt as my mother, who's in her 60s had a hernia operation scheduled that day and she's the sole carer/guardian of a little girl who she'd fostered so I was helping her with childcare. But because she's twice widowed and therefore alone, I can't bring myself to tell her about this as she will also worry so much. I'm sure I will have to at some point but it's adding to the upset. I have fantastic friends too but again, I just can't bring myself to say anything. So ridiculous, but I hate being an imposition to anyone. That sounds horribly martyr-ish! But I desperately don't mean it to. I just want to bury my head.

midori1999 Mon 26-Nov-12 13:12:48

In my area results after lletz take 4-6 weeks, but mine were sooner. 3 weeks and repeat appointment the first time and one week and got results by phone then followed up in post the second time.

It's also now common to do a follow up smear and test for HPV 6 months after the lletz and if no HPV or abnormalities go back o 3 yearly smears. If HPV but no abnormalities then its yearly smears. Obviously if there are further abnormalities (unusual, my consultant said 1 in 10 chance) then you'd need a repeat colposcopy then.

midori1999 Mon 26-Nov-12 13:08:17

I've recently had lletz done twice after severe abnormalities (cin 3) were found on my smear. In fact, I posted on here about it. It's now 5 weeks since my second treatment, which was 5 weeks after my first.

I'm not going to lie. A smear can't tell for sure what it is, only a biopsy can and if they are doing lletz right away then they will just biopsy whatever they remove. It's extremely unlikely to be cancerous ( and might not even be as 'bad' as CIN 3 once they biopsy) particularly if you've kept up regular smears and have no symptoms.

The lletz itself isn't too bad. I went by myself to the first one and drove myself as my husband was away. It doesn't hurt, although the anaesthetic makes you feel weird as it contains adrenaline. The bleeding after is period like with some mild to moderate cramping. I think it's common to feel tearful and exhausted afterwards, so do get some help if you can with children.

penguinplease Mon 26-Nov-12 12:56:37

No I understand the childcare thing but the important thing to remember is that this is PRE anything sinister.

Don't let it overshadow your Christmas.. easier said than done but really if they felt it was emergency they would have you in much sooner.

LegArmpits Mon 26-Nov-12 12:48:45

It's the 27th December Penguin, so stupidly near Christmas. They said I could phone daily for a cancellation but its not so easy to organise childcare at short notice.

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