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Original poster

CIN 2 LLETZ- please help

30 replies

Thestateofplay · 09/04/2020 18:13

Previous poster re-registered here.

Would really like to hear your stories of the above. I’m 33yo and after an abnormal smear back in Nov, was referred to Colposcopy. One of the most horrendous experiences I’ve had. I was in agony. Felt misinformed and had two panic attacks, severe anxiety - you name it. Somehow, I got through it. They took two biopsies when ‘in’ there- I didn’t feel that was my choice. I was screaming out for pain relief. There was none.

Afterward, I was in a lot of pain. Felt my body was violated, was confused about my consent given the state I was in. Have been traumatised since.

Fast forward 3 weeks, I have biopsy results. CIN2 and recommended LLETZ. I’m terrified. I feel the research on the side effects is wholly inadequate and I’m worried about my future fertility, loss of libido and ability to enjoy sex. Many women have posted this after effect in reputable forums.

Please help inform me on where to go next. I have been advised to have general because of anxiety, but I would feel more violated not being awake; and then there is going into hospital during Coronavirus- I would rather local. I’ve the option to get diazepam from my doctor, as required.

Hope this isn’t triggering for anyone. I’m just trying to inform myself and decide: to go, or not to go?

OP posts:
Original poster
Thestateofplay · 09/04/2020 23:49

Anyone?

OP posts:
Petiolaris · 09/04/2020 23:53

I’ve never heard of that side effect. I had the same treatment 17 years ago and I’m absolutely fine. No problems with fertility or libido. You do need to have the treatment though - it can develop into cancer and claim your life if you don’t.

Greenmarmalade · 09/04/2020 23:54

Hi OP, I’m so sorry you went through all of that. I had cin3 and lletz under general (I was getting another thing done at the same time). I was really anxious about it but it was all fine. I needed a couple of days to rest afterwards but I wasn’t in much pain.

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Greenmarmalade · 09/04/2020 23:56

I forgot...
Fertility: I got pregnant very quickly afterwards and have since had another baby with no issues with my cervix length. I did push for an extra scan to measure it, to be sure.

Sex: no issues.

pinkfluffyrobe · 09/04/2020 23:59

Hi there
I had a similar situation to you. I had the Lletz under local anaesthetic and it wasn't pleasant but it was over fairly quickly. Take some time to rest afterwards.

Please however, if you are trying for a family or planning to at any point, ensure they tell you how much cervix they are removing and the extent of any damage.

I will spare you the details but my hospital didn't tell me or keep adequate notes and it ended in heartbreak for us in a pregnancy.

I am only sharing this so that you can be better informed than I was.

Wishing you lots of luck for your procedure x

Petiolaris · 10/04/2020 00:01

When I was pregnant I also had the length of my cervix measured and it was fine. I did struggle to dilate during labour and had a c section but that couldn’t be specifically attributed to the LLETZ.

FluffyPinkSocks · 10/04/2020 00:01

I have had Lletz done twice. Absolutely no side effects. Fertility wasn’t one of my fears as I had completed my family, libido etc not effected. Tbh I was terrified first time around, I’m as squeamish as they come but it was nothing, compared to what I had conjured up in my mind. 20 minutes and it was all over. Second time around I knew what to expect so was more relaxed about having it done. Step away from Dr Google, you’ll have yourself dead and buried or demented! Go for the treatment, you’ll get through it no problem.

megletthesecond · 10/04/2020 00:03

Don't panic Flowers. I had CIN3 twice and LLETZ twice. Diazepam for the colposcopies. I had my LLETZ under a general as I couldn't stand the thought of being conscious and wanted the consultant to do it in peace.
I had to have c-sections as my cervix had scarring on it and wouldn't dilate (we realised this in the nick of time) but no other problems.

Original poster
Thestateofplay · 10/04/2020 11:44

Thanks, I really appreciate the replies.

I’m just trying to inform myself with all the facts. @pinkfluffyrobe I’m sorry to hear of your experienceFlowers Are they able to anticipate in advance how much they’re going to remove? My worry is they go ahead and remove it, tell me I’m retrospect and by then it’s too late?

OP posts:
Original poster
Thestateofplay · 10/04/2020 11:45

@megletthesecond would you mind telling me how many diazepam you had?my doc prescribed one, but not sure it will be enough

OP posts:
pinkfluffyrobe · 10/04/2020 11:53

@Thestateofplay yes they should tell you how much they intend to remove and have a discussion with you about what is absolutely necessary to remove if you are planning to have a pregnancy in the future.

My case is rare and I think most doctors are very good at doing this and ensuring that record keeping is good so that if a big amount is removed, Close observation takes place in any subsequent pregnancy. I don't want to add to your worries but I am sharing just because I wish I had known then what I know now and wouldn't want it to happen to anybody else xx

Original poster
Thestateofplay · 10/04/2020 12:00

@pinkfluffyrobe thank you so, so much. Exactly what I needed to read. Feel like I’m
Going mad with my need to know everything.

The consultant has been great. She didn’t mention this, and I didn’t ask. I intend to call my doctor regarding medicine as a coping strategy, and to get clarity on the scope of removal.

Would you recommend using headphones as a coping mechanism to zone out?

OP posts:
pinkfluffyrobe · 10/04/2020 12:04

Headphones definitely! I used them for a recent root canal and wish I'd have thought of it sooner! Just maybe not AirPods because they call out quite easily and then they will be on the floor as nobody can pick them up Grin

A really good podcast (Jessie Wares fable manners or The missing Cryptoqueen) will keep you happily distracted.

The procedure itself is fairly quick.
x x x.

Original poster
Thestateofplay · 10/04/2020 12:06

Thank you, that’s amazing advice. I hate being this anxious wreck as it’s at odds with who I can be !

Did you get results quickly ?

OP posts:
OneIsAWorldOfBooks · 10/04/2020 12:09

I had lletz 3.5 years ago. Like you I really struggled with the biopsy, found it extremely painful and took me a long time to recover from. I was petrified of having the lletz treatment but did under local anaesthetic and it was fine. Uncomfortable being injected with the anaesthetic but much less painful than the biopsy and my recovery was much faster. Currently pregnant and have a scan in a couple of weeks for them to measure my cervix. Just wanted to reassure you that a horrendous experience with the biopsy doesn’t mean the same for the lletz treatment Flowers

megletthesecond · 10/04/2020 13:18

thestate you know I can't really remember. It was about 15yrs ago. Not many, possibly just a strip of 4 or 5. I was climbing the walls a bit so halved them and took them on evenings I was incredibly anxious as well as taking one for the colposcopy.

JasperRising · 10/04/2020 13:49

I had the lletz treatment - personally I didn't find it a difficult procedure at all and it was better than the biopsy (which I nearly fainted at and had to put in a side room until I stopped being dizzy!) but it was done my the most experienced consultant in the department which probably helped. I don't remember being told how much they removed and it never occurred to me to ask - I wasn't even thinking of TTC at the time so wasn't aware of any issues.

I subsequently did conceive a few years later and at the booking in they asked about procedures I'd had. As I put lletz on the form I got referred for an additional scan and consultant apoointment, and was put under combined consultant/midwife care until I had the results (not sure if this will be the same procedure in a trusts but it was in mine). As it happened the scan showed no issues with cervix length and I was discharged to midwife care.

HoldMyLobster · 10/04/2020 15:11

I'm sorry you had such an awful experience. I had some very painful surgery with no pain relief after one of my births, and I do still get very emotional remembering it (17 years later) so I totally understand how you must be scared after such an awful experience.

Here's my CIN and LLETZ experience. I had a colonoscopy but no biopsy that I remember, so no real pain.

It showed CIN3 so I went on to have LLETZ treatment. I didn't feel anything in the treatment other than the initial injection, but once it wore off I was sore, took paracetamol, and went to bed for the rest of the day. I bled on and off for a few weeks, and couldn't use tampons, which wasn't pleasant.

I went on to have 3 children very easily - it didn't cause any problems conceiving or giving birth.

You're doing the right thing asking questions, finding out what to ask your doctor, and preparing with something like Diazepam. I hope all goes well.

Original poster
Thestateofplay · 10/04/2020 17:30

Really appreciating these insights - thank you. And I'm sorry to all who have found it equally hideous.

That's encouraging to hear the LLETZ is not necessarily as painful as the colposcopy / biopsy. Personally, I think it's disgusting no pain relief is offered before. It is not exactly a minor thing and feels like women's issues being trivialised; getting two punches of your cervix taken out without painkillers! No wonder if felt how I did.

I'm feeling a lot more informed about it now. And I'm very clear that I cannot go ahead without sufficient pain relief, diazepam and the knowledge in advance of exactly how much is to be removed.

One further quandary: i have been told I cannot take my partner in this time. I suspect due to corona virus, but this is probably what is concerning me most; he is the only thing that got me through last time. The nurses I'm sure were great, but I'm not good with those I don't know at the best of times. They kept giving me pep talks and I just wanted to scream shut up I don't want to hear this or talk; I just want it over.

My worry is I will get there and won't be able to go into the room without him?

Really wish I could stop worrying and getting anti anxiety help now - it will be a long three weeks

OP posts:
ittakes2 · 10/04/2020 18:45

I had CIN 3 - so did the biopsy and had a local with the bit where they burnt off an inch of my cervix. I found the biopsy uncomfortable but no memory of the pain you experienced. I did however find the long needle going into my cervix for the local very painful. That traumitised me and affected my anxiety around future pap smears. I am sorry but I can remember the moment 15 years later! So I always recommend it being done under a general. I was sexually assaulted as a child and the NHS does let you ask for an all female crew - would that help your thoughts of being under a general? If not, then maybe they will give you some sedatives before you have it done in the chair. The proccedure is unpleasant but really only lasts for 15mins from start to finish.

ittakes2 · 10/04/2020 18:48

Sorry can I just add - even after losing 1inch of my cervix I went on to successful carry twins a couple of months after my surgery.

Original poster
Thestateofplay · 10/04/2020 19:05

Eek I wasn't concerned about the anaesthetic as not been troubled by needles in past 😂

Will try not to think about that part and focus on the short time period.

OP posts:
Original poster
Thestateofplay · 11/04/2020 10:54

Did anyone else wake up every day thinking they couldn't do it?

OP posts:
Original poster
Thestateofplay · 13/04/2020 22:45

Can anybody tell me if they were able to get specifics in advance; I.e. the exact grade of cells and how much was abnormal and crucially, how much they intend on removing?

I feel I don't want to proceed unless I know specifics; nor can I sign the consent form without it.

OP posts:
Whatnametoday5 · 13/04/2020 22:59

19 years ago I think it was CIN3 cells found? I had a Colposcopy - if I remember a solution was put on my Cervix which showed what needed removing - i needed a fair bit removed but it was all done at the colposcopy- you need to have that with the solution to see how much needs removing / if that makes sense? They can’t tell you before hand as they don’t know.
I then had six monthly smears which showed after 18 months I needed another colposcopy- less invasive this time round. I then got pregnant (which was a welcome surprise!) but it did mean as soon as I was up to it after having the baby I had a smear. This showed I still had CIN cells & it was decided the LETZ would be a better option for me - which I had. I then had six months smear for a year, then yearly smears for years - all clear. I’ve had another pregnancy in between - other than a check to make sure all ok cervix wise all went ok.
I’m now on a normal smear programme all clear.