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LLETZ procedure today after abnormal smear, quite scared...

(12 Posts)
CaptainNemo Thu 23-Sep-10 19:59:32

I will try to be brief on the history of this, but I think it's relevant.

First fell pregnant in September 2007 and had a mmc followed by an ERPC at the beginning of November 2007.

Started TTC again almost straight away and conceived again very quickly in December 2007. Sadly DS had a chromosome disorder which was "incompatible with life" which was diagnosed after an amnio at 15.5 weeks following nuchal blood test results which were off the scale according to my (lovely) consultant. I was induced at 17.5 weeks.

Before we started trying again I had all sorts of tests (all normal) and a smear test in July 2008 which showed borderline changes and inflamation.

Went for a follow-up to the colposcopy clinic (September 2008) and asked them to do a biopsy as well as another smear rather than just another smear and wait-and-see because after the year we'd been having simply couldn't face the idea of more wait-and-see. Result of 2nd smear was the same - borderline changes and inflamation - but biopsy was negative and they said fine to TTC.

DD was conceived in December 2008 and was born at full term in August 2009 following a text book pregnancy. She is the light of my life.

Follow up smear January 2010, normal.
Further follow up August 2010, borderline changes again, so back to the colposcopy dept at the hospital today.

Was (naively?) expecting a further smear and maybe another biopsy as before but consultant said that as this was the 2nd time I'd had an abnormal result he wanted to take things further and performed a LLETZ treatment... TBH think I was in shock somewhat at what he was telling me.

He removed a piece of my cervix about 1cm across and said I would get a follow up appt in 6-8 weeks for the results, unless I fancied forking out to see him provately in which case the results would be available in the next week or 2 hmm

Would really appreciate hearing from anyone who is/has been in this position.

One of the tings I'm worrying about is that he's referred me for an ultrasound to look at my ovaries and uterus in case it's "glandular" - I have no idea what this means and it's scaring me silly.
Am also terrified at the thought of not being around to watch my little girl grow up...
And also pretty scared of having to have treatment which means I can't have another baby/will find it harder to conceive/be more likely to miscarry/go into premature labour...

AAAARRRRRGGGGGGHHHHHHHHHHHHHHHHH!

Please will someone come and sort me out? sad

CaptainNemo Thu 23-Sep-10 20:00:11

The whole "trying to be brief" thing didn't go too well did it? blush Sorry.

CaptainNemo Thu 23-Sep-10 20:57:05

Has anyone else been referred for an ultrasound following an abnormal smear?

BelaLugosiNoir Thu 23-Sep-10 21:39:11

I work in a screening lab so know a bit about colposcopy - however obviously I don't know anything about your specific circumstances, I'm not medically trained.

Did he say anything other than "in case it's glandular"?
There are two types of cervical abnormality, those originating from squamous cells (on the ectocervix) and those from glandular cells.
Glandular cells can be several types including these types of cells form endocervical glands which produce cervical mucus, and those forming the endometrial lining (which breaks down every month).

I suggest you (a) ring the colposcopy unit up to get them to explain what he meant, what/if he is thinking about
(b) make an appointment with your GP to discuss it as the colposcopist should write to them with the visit outcome plus you've been left in a position of uncertainty.

I think he's being quite thorough, and probably just playing it safe by getting you checked out.
There are quite a few people on here who've had treatment for cervical abnormalities and the reassuring thing is that if there is something else wrong then it is very very treatable.

Other sources of info (and don't start googling honestly!) include the colposcopists' website and Jo's trust. I warn you that Jo's trust is primarily for women with cervical cancer but the forum is very supportive, particularly for those being investigated for all sorts of cervical abnormalities (pre-cancerous and cancer). People have different levels and understanding of knowledge on there though, so you won't necessarily get answers but you will find women going through the same thing.

I hope that's been useful. The main thing to take away is that it sounds to me like you need more info about what they thinks going on, and then you can start to get your head round it.
I'll check back in later. Hope you're ok

CaptainNemo Fri 24-Sep-10 00:22:22

Ah thanks Bela, that's really helpful. I'm really hoping to get in touch with the consultant I was under when I had my daughter (different hospital) as I'm sure he'll explain things better than the consultant today did. Plus I trust him implicitly. I promise not to google, I know from past experience, that way madness lies confused A friend of mine is a GP so I may ask her. The ultrasound is tomorrow so hopefully I'll be told that everything looks normal as far as they can see. TBH I'm not sure exactly what the consultant said about the 'glandular' thing - one of the downsides of going to an appointment by yourself I guess. I did try to make a note of what he'd said afterwards because again from past experience I know that when you've had a shock your memory can play tricks on you, but I'm really not sure about that bit... TBH it's all a bit of a nightmare... not expecting to sleep much tonight!

BelaLugosiNoir Fri 24-Sep-10 07:19:26

Hi Cpt
Hope you've got some sleep. Good to hear you're staying away from google. wink

It does depend on how much involvement that the other consultant and your GP friend have had with colposcopy but if you feel more comfortable with talking to them first, then it's a good idea.

Hope the u/s goes well. Will be thinking of you.

CaptainNemo Fri 24-Sep-10 09:01:20

Thanks Bella. Would have got more sleep if DD hadn't been up at 2am confused

My lovely other consultant phoned about half an hour ago and was very helpful. Guess it's just going to be a bit of a waiting game for the next couple of weeks, something I've never been very good at... There was something else I wanted to ask you, but my scrambled brain has totally forgotten what it was... I'll let you know how the u/s goes if that's ok. Thank you so much for your support smile

rabbitstew Fri 24-Sep-10 11:10:34

CaptainNemo - I'm sorry you are having to go through this. It is horrible. I had a similar experience with smears that would fluctuate between normal and borderline, normal and CIN1, normal then finally CIN3. I also had persisting inflammation for several months after the birth of each of my dss (had to delay repeat smears, as cervix still too inflamed) - my cervix just seemed to be very sensitive and took a long time to recover from childbirth. Having been treated for CIN3 I then had another really odd smear result (lots of remarks about cells looking odd, but no definite CIN result, just the comments), with possible endocervical changes, and had a massive chunk taken out of my cervix, because the consultant thought there might possibly be something abnormal disappearing up into my cervical canal. I also had a massive panic about the possible endocervical abnormality, since, by definition, it's a bit hard to see what's going on on the inside walls of your cervix. In the event, though, I was told the results of the LLETZ just showed non-specific inflammation and an area of metaplasia, which I think is an area of rapidly changing cells, but as the result of a benign rather than a disease process. In other words - nothing to worry about. Ever since then, I've had normal smears, with no inflammation or any other comments on the smear reports.

So, I can't tell you everything will be fine in your situation, but I can tell you that apparently terrifying situations can end up a damp squib, and that removing part of my cervix does appear to have resolved the apparent constant changing of my cervical cells from normal to odd...

BelaLugosiNoir Fri 24-Sep-10 19:54:25

Rabbitstew: the way the body reacts with repair after treatment can produce cell changes which are quite hard to interpret. Particularly in endocervical cells and sampling from higher up the endocervical canal, from the lower uterine segment - there is an overlap in features seen in normal and abnormal cells. The body also can react post-LLETZ with a benign process called tubo-endometrioid metaplasia. For cytolologists, this can be quite a challenge to interpret and sometimes we get it wrong and think it's abnormal when it isn't.
That may be what happened with you after your first LLETZ. Cytology is more a spectrum of changes rather than a clear demarcation between normal, inflammation and abnormal.

Cpt: sorry to hear about the sleep, hope the u/s went well.

rabbitstew Fri 24-Sep-10 21:24:03

Thanks, Bela. I've always wondered what was going on with that really weird smear result!

hartley35 Fri 17-Jul-15 06:00:42

Hi, trust me the levels of removal you describe are minimal. I have had now 2 stage 4 lletz procedures and am now unable to carry a child naturally without having to be stitched up, making miscarriage risk extremely high. I have battled the threat of cervical cancer since I was 26. I made the choice to have a child (now nearly 4 and happy beautiful and healthy at aged 30) I always hoped to have 2 but now the risk is too great. If I were you I'd try. Good luck.

hartley35 Fri 17-Jul-15 06:05:45

Just to confirm in no uncertain terms and gory details clarified, my cervix is basically gone. The last piece they removed was the size of a sprout. 1cm, whilst very scary, and borderline cell changes is manageable, I have monthly smears. My next bad result is full hysterectomy. I'm not being awful in any way I'm just explaining in an educated personal experience way, you have a long way to go till it gets real bad. Smile baby girl you are doing just great, make sure you keep going regularly for smears and you will live. I promise. Xx

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