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At a loss whether to have lletz for cin2 or not

17 replies

indecisivequeen · 25/09/2020 20:24

Abnormal smear in July showed high grade moderate dyskaryosis and HPV (had HPV the year before and had to have it repeated this year). I've been for a punch biopsy and colposcopy which showed cin2. I was advised they were having a colposcopy correlation meeting where they discuss best management plan with experts. Had a phone call today following that explaining my options. Either lletz or 6 monthly follow ups with colposcopy and biopsy as there is a 57% chance it can clear on it's own (hope I got that percentage right, it was a lot to take in)

I have not started my family yet and it something DP and I are really set on in the near future, and the risks that the lletz has worries me if I'm getting it done when it's possible to clear on it's own. Both are scary options for me, I'm terrified of the lletz procedure eand the side effects but i'm also scared about having a biopsy every 6 months as it was not a pleasant experience and I felt really vulnerable/emotional afterwards.

What I didn't ask to the nurse who called, was if there is a risk to having multiple biopsies, this is my main question which I won't be able to ask not until next week and it's a question I thought about later on, I felt it was a lot to take in. I can't find much information online about the risks, can anybody help me with that?

The way the nurse was talking, I felt like she was advising me towards the follow up option. I keep changing my mind every 2 minutes, I just don't know what to do. What would you do if you were 26 and having a family was something that was so important to you? My health obviously is also my main concern. My DP is really concerned about the risks of the lletz as it means the world to him to be able to have the chance to be a dad especially as he is just about to turn 30 and feels more ready than ever. Any advice regarding the treatment options massively appreciated!

I am so sorry this is so long and thank you for listening if you got to this point, my head is all over. I just really don't know what to do for the best.

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indecisivequeen · 25/09/2020 21:00

Hopeful bump

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HariboFrenzy · 25/09/2020 21:05

I have no experience of this (other than having had a colcoscopy and punch biopsy) but I think in your shoes I would be inclined to take the follow up option over the lletz. Sorry you're having to deal with this, I can imagine how anxious you must be Flowers

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indecisivequeen · 25/09/2020 21:30

@HariboFrenzy thank you for replying, I was leaning more towards that option but I feel it would always be hanging over my shoulder when the next appointment would be to have the colposcopy/biopsy. And whether there is any risks to multiple biopsies where they are taking samples every 6 months as they are still taking cells away (I think). I always come away from an appointment/phone call with more questions and I really annoy myself for it.

I did ask what would happen if I got pregnant within the follow ups and she said they would still do the colposcopy but no biopsies. I wasn't expecting the phone call and was actually at DP's mum when they rang so I feel I need to ring with a pen and paper to write down notes, they will probably think I'm a bit dim for going over some things again and asking more questions I didn't ask during the first phone call but I just feel like I need to know more before I make a decision.

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CheesePleaseLoueese · 25/09/2020 21:42

I'd be tempted if I were you (that's a big "if" of course because I'm not you...) to just get the treatment over and done with.

A few years ago I had LLETZ treatment for CIN 2/3 (I had a mix of both) and I then went on to have two pregnancies. The first pregnancy was within two years of the LLETZ treatment.

My cervix was "normal" on all my antenatal scans. There was no shortening at all. I got an extra pregnancy scan to check but that was the only thing that was different.

You may need a repeat treatment if you have a LLETZ (if it doesn't remove all the diseased cells the first time) but I think for the vast majority of women one treatment is enough.

It stops the worry and you can TTC in the future without worry.

Of course this was my experience and ultimately the decision is yours.

If you've waited a year and the cervical dysplasia is still there, then I'm not sure how likely it is to clear... Quite possibly.

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blindmansbluff · 25/09/2020 21:43

I've had lletz for cin3 when I was 20, went on to have three children the first 6 years later. It was never commented on other to note I had a fresh looking pink patch where it was done Grin

What did happen, which I found out later to be reasonably common after lletz, during labour I was a slow burner till right at the end where the last 4 cms went by in minutes. Happened all three times.

It's a quick, simple procedure and in your shoes I would have it done and get it out of the way.

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Toodeloo · 25/09/2020 21:47

Duh... do it! I had it at your age for CIN3. Absolutely no bother. Yearly smears for many, many years after but also pregnancies with no problems.

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Catchingbabies · 25/09/2020 21:51

Another thing to consider is when are you planning on starting a family? The biopsy can’t be done during pregnancy so if you’re likely to become pregnant in the next 6 months would this mean missing your biopsy?

From a midwife point of view we care for lots of women that have had LLETZ, how much it impacts on the pregnancy depends on how much they have removed and the final cervical length. Are they able to tell you how much they plan to remove so you can assess the likely impact?

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cheezy · 25/09/2020 21:55

When I had my lletz it was over so quickly and painlessly I didn’t even realise it had been done! It was literally seconds and completely painless.

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eurochick · 25/09/2020 21:55

I had a similar issue with the added complication that I was about to start ivf and not getting any younger! That pushed me towards the monitoring option. I've had yearly smears since. If I remember correctly they haven't gone beyond "borderline" since then. Certainly nothing requiring treatment. If it hadn't been for the ivf timing I might have gone for the lletz for peace of mind.

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indecisivequeen · 25/09/2020 22:01

See one minute I do think it might be best to just get this over and done with but then on the other hand I just can't imagine us not being able to conceive as it's so important to us. @catchingbabies we had the full sit down talk after I had the colposcopy/punch biopsy and when I was pretty sure it would come back as cin3 and I would have to have the lletz done and after was done and I had recovered we would we start trying, so in the new year. But now, I'm not so sure, DP would happily try right now if I allowed, but personally I would like us to enjoy another holiday or 2 and just being us 2 a little longer (been together 6 years) and start ttc end of next year. But I would say definitely within the next year. I'm literally so conflicted but it really does help to hear your opinions and experiences.

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waltzeswithsnobs · 25/09/2020 22:03

Oh, I'm sorry you're having to deal with this. Flowers As I was reading I thought 'definitely have the LLETZ, why take the chance?' and then saw about you planning to have children.

Maybe the best thing to do is opt for the follow up for now to see if the CIN2 cells do clear. If not, you always have the option of an LLETZ at that point if needed.

Unfortunately there can be a risk with multiple biopsies. Cone biopsies can weaken the cervix, along with an LLETZ. Other types of biopsies may be okay though, as less tissue is taken.

I've had an LLETZ myself, at the start of the year, so if you have any questions about the procedure I might be able to answer them for you. There weren't any big side effects for me, there are some restrictions for six weeks. No baths, swimming, sex, tampons.

All the best with whatever you decide.

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Emma1962 · 25/09/2020 22:06

I had lletz and got pregnant within 12 months. I was nervous but they monitored me closely and all was fine. My cervix was actually still pretty strong! I’ve since had another child & ive had no probs with either pregnancy. The procedure for me was a bit uncomfortable but I think because I wasn’t expecting it to be done at that apt but it was very very quick & after an hour or so there wasn’t any discomfort.

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PheasantPlucker1 · 25/09/2020 22:13

Ive had a couple of LLETZ treatments, and it was fine. I used to book day off work and pretend it hurt just to get a break from kids and housework, but honestly it was only mild discomfort rather than pain.

I also had another child after, with no problems.
Its really not as bad as it sounds!

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BelaLug0si · 25/09/2020 22:16

Hi
I've tried to find some info for you to review.
Here is a video about the conservative management of CIN2, I think it is primarily aimed at professionals in the field. If you are searching then that's the keywords to use.

Cohort study of the

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indecisivequeen · 25/09/2020 22:31

Thank you all again for taking the time to reply I really appreciate it, I will definitely ask the nurse next week when I call back about how much they would need to remove/how big the lesion is. If you think of anything else that's worth asking that I haven't mentioned I will add that onto my list.

@BelaLug0si thank you for taking the time to post that info for me, I will have a look now!

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Samiad85 · 25/09/2020 22:34

Hi op, sorry you are going through this. I was diagnosed with stage 1a1 cervical cancer when I was 25 from a routine first smear test. As it was caught early I was treated with lletz but the first didn’t come back with clear margins so I had it repeated a month later. I found both just a bit uncomfortable.

I got pregnant after very easily (first month off contraception) I had a healthy, easy pregnancy but was scanned every 2/3 weeks from 17weeks pregnant because of the 2 lletz treatment & risk of premature birth but I actually went 9 days overdue. I’ve never had a problem since.

I would absolutely have it done but best wishes and good luck with whatever you decide x

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indecisivequeen · 25/09/2020 22:57

@samiad85 I am so sorry that you had to go through that, I can't imagine how scary it was for you, it's great to hear that you managed to get pregnant easily. I sort of wish I didn't have a choice to make things easier for me. I'm going to call my mum tomorrow who I'm very close to, to talk about it with her to seek her advice, I know she's been worrying about this and especially as, although she hasn't been through any worries cervical wise, she was diagnosed with breast cancer at 27 when she had a new baby (my brother), so not much older than I am now, so I feel like her and my dad will also advise towards the lletz procedure due to their worrying experience. It is really shit being a woman sometimes!

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