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LLETZ and pregnancy - advice

(30 Posts)
Carabu1 Sat 23-May-20 08:52:53

Hello ladies! I’m 8+2 with my first, and just seeking some advice from anyone who has experience of lletz treatment for abnormal cervical cells and pregnancy.

I had lletz for low grade changes about 3.5 years ago, can’t really remember them saying much about pregnancy but looking online it looks like the loss of cells can weaken the cervix and cause preterm labour. It also looks like there are some fixes for this (eg stitches). So my question is: when do you need to get this investigated (before 12 weeks? After?) and how did it go for you?

I am feeling a bit anxious as still haven’t got either a midwife date or a scan date so I have no idea when I’ll be able to ask someone and don’t want to miss the boat, as it were. Would consider going private if anyone has recommendations on private antenatal care.

Thanks ladies!

JSLACEFAMILY Sat 23-May-20 09:20:02

I had this procedure done last April for CIN 3 but at the time wasn't aware of how much was removed. At my booking app the midwife refused to refer me as "I hadn't been put to sleep". After speaking to a friend who is a midwife in the same trust I was not happy with the decision and range the Colposcopy dept to check. The consultant said it did not matter whether I was put to sleep or not I should still have a cervical length scan done at around 16 weeks. I spoke with a lovely midwife who discussed with the obstetric consultant who agreed to check everything out and I had the scan done at 14 weeks. Thankfully I did because I was already under 25mm!
I had a stitch put in at 15 weeks and also progesterone pessaries. It turns out they had removed 20mm last year!! I'm now 21 weeks and everything is going well.

I would bring it up at your booking appointment and push to be booked in for a cervical length scan. Some trust don't like to do them for only one lletz procedure but my colposcopy dept said that any work (in that area) should be checked.

Carabu1 Sat 23-May-20 09:28:57

@JSLACEFAMILY that’s really helpful thank you so much. So sounds like when (if?!) I ever get a booking appointment with the midwife that’s the time to push to be booked in to get it checked?

I’ve had some really horrible experiences with the nhs and receiving what turned out to be the wrong/inadequate care, so I don’t really have much faith in them doing the right thing spontaneously — I find you have to advocate quite hard for what you want!

3isthemagicnumber3 Sat 23-May-20 09:32:35

I had this procedure 10 years ago. I have an 8 yr old and 6yr old and I am pregnant with number 3, never has any problems in pregnancy and didn’t have a scan. Mine was low grade (I think CIN 1) so maybe if higher they would take more away? I do know lots of people that have had his procedure and gone on to have healthy pregnancies with no issues and no interventions. A friend of mine did have a stitch in both pregnancies, she had high grade pre cancerous cells and required more treatment.

Carabu1 Sat 23-May-20 09:45:21

@3isthemagicnumber3 - that’s so reassuring, thank you. I can’t really remember how much they said they took out, but it was def low level changes (cin 1 or 2, cant remember which) so I guess hopefully not too much ! I know it scarred quite badly though because I tried not long after to have a coil put in and they couldn’t get it past the scarring (ouch!).

I’m going to ring on Tuesday and hassle for a booking appt, and then hassle more for a cervical scan. Hate being ‘that person’ but feeling a bit forgotten about.

TenThousandSpoons0 Sat 23-May-20 11:10:35

Hey looks like you already had some good advice. You can also try to find out the depth that was taken out - it is reported on the histology (lab) result from the sample. Whoever did the procedure , or your GP office perhaps, should be able to let you know that result? If under 10mm then no increased risk so that could help put your mind at ease.

Klwb93 Sat 23-May-20 11:55:32

Hey, I'm in a similar position, I had a lletz done about 2 years ago as I had severe changes to my cells and when I spoke to my midwife she said I might have to be referred to have someone check my cervix during my pregnancy, see if your midwife will refer you x

Phiphi123 Sat 23-May-20 12:05:54

This is really stressed me out. I am 16+4 and had biopsy and lletz treatment for high grade CIN 3 cells in Feb 2018. At my booking appointment I specifically told the midwife this, she said I might need to have consultant lead care and that perhaps I would see a consultant at my 12 week scan- I didn’t and thought nothing more of it. I am going to call midwife on Tuesday and colposcopy to try and find out how much was removed, is there anything else I can or should do apart from this? I am not confident in the care I am receiving from midwifery so will this be something I really need to push to have looked into? Very anxious first time mum...

Carabu1 Sat 23-May-20 12:11:21

Thanks so much for all the replies. I’m quite used to having to hassle for everything, tiresome as it is, so will get on it next week. Calling the colposcopy/gp to try and find out how much was removed is a great idea. I think if they really won’t get someone to look at it I’ll pay to have it checked privately, just for my own peace of mind.

@phiphi123 I’m sorry if this thread has made your stress worse! Like you I’m an anxious first timer, and my care so far has been non-existent (no date for any appointments, no midwife, no number to call...I know 8 weeks is early, but I have been disappointed). Just trying to find out as much as I can so I know what to push for - sounds like we’re in the same boat so fingers crossed someone listens!

TenThousandSpoons0 Sat 23-May-20 12:13:05

FYI OP and @phiphi usually if you have had just one LLETZ the depth is less than 10mm and almost always less than 15mm, the likelihood is that you will be at minimal increased risk, if any! Obviously do check in on things but by far the mostly likely scenario is that everything is totally fine x

TenThousandSpoons0 Sat 23-May-20 12:14:40

Cross post smile really feel for everyone struggling to get the care they need esp early on in that anxious time! Hope all sorted soon

CheesePleaseLoueese Sat 23-May-20 12:19:23

I had let's for cin2/3 about five years ago. I've had two pregnancies since then. My cervix looks normal apparently so no issues there and no pre-term labour.

I've had one or two extra scans in both pregnancies to check the length .

Luckyme30 Sat 23-May-20 14:36:34

I had LLETTZ for CIN3 last June and was put to sleep for the procedure, I’ve also had numerous surgery’s to remove scarring from my cervix in the last 2 years despite this I’m not due to see a consultant until 20 weeks.

I have a cervical scan booked the week after my 20 week scan, I questioned it with the hospital as to why so late on and they told me that’s standard procedure at my local hospital so maybe yours will be the same?

Just to say I’m now 17 weeks and haven’t had any issues (touch wood!) so hope this reassures you a little smile

Temple29 Sat 23-May-20 14:59:54

I had a LLETZ procedure in 2018 for CIN 2 and gave birth to my first baby in 2019. Hospital never checked me at all prior to the birth. They said if you’ve only had one you don’t need to even be checked.

Now pregnant with DS2 and attending a different hospital and they said they would have wanted to do a cervical scan prior to birth after any LLETZ so might depend on where you attend. I think I would have been more comfortable if they had checked the first time.

Best of luck with your pregnancy 😊

sarahc336 Sat 23-May-20 16:43:49

I had cin 3 cells removed and then fell pregnant about 12 months later and everything was totally fine, in fact my daughter was 5 days late. The midwife at the time said they would only be concerned if you'd had more of an actual piece of cervix removed which of you had cells laser Ed or burnt off this does not count. It's actually quite a common procedure and there isn't any risk in pregnancy following it xx

Pralinehalo Sat 23-May-20 19:33:09

I had a LLETZ for CIN 3 cells that went quite high up my cervix about 5 years ago but I had it done privately and the detailed notes weren't on the system. Told midwife at the booking appointment and was referred for an internal scan at 16 and 23 weeks. They checked my cervix length at 16 and all looked normal, then did a more detailed check at 23 (including pressing on my belly to see if the cervix opened) and again all within normal range. Overall they assessed my risk of early labour at 9.6% which is very slightly higher than normal. Not due till September so we shall see but definitely get it checked.

SquigglyOne Sat 23-May-20 19:42:25

I had to have 3 cervical length scans during my pregnancy because of previous lletz treatment. I was convinced baby would be born early - ended up needing to be induced at 41+5 😂

lumpydaisy Sun 24-May-20 14:32:33

I had two pieces of my cervix removed due to CIN 3 11 years ago. I mentioned the LLETZ treatment at my booking appointment but no-one indicated this was a concern. I have a couple of other pre-existing conditions, so when I got a letter inviting me to a 16 week consultant appointment, I assumed it was to do with these other conditions. The week before the appointment, someone (not the consultant) called and cancelled it. I got another letter with a 20 week consultant appointment.

Due to what has been feeling like poor care (thanks coronavirus!) I started doing some research and discovered that, um, YES LLETZ is potentially an issue and your cervix needs to be checked! The NICE guidelines stipulate ANY LLETZ (regardless of size) puts women at increased risk of preterm birth/late miscarriage and should be checked out by 16 weeks. To say I was horrified was a bit of an understatement.

I called the antenatal clinic and asked whether this scan would be done at my 20 week anomaly scan. They said it wouldn't, but not to worry because my consultant "does her own scanning". So I held on for the 20 week consultant appointment.

The week before the 20 week appointment, someone called wanting to cancel that appointment too! I was pretty angry, and refused. I turned up to my appointment the following week and was seen by someone who was NOT my consultant (from the voice I believe it was the same person who cancelled my 16 week appointment). She had no intention of scanning me, or of actually letting me see the consultant I was booked with. I had to argue and quote the NICE guidelines before she said she'd "see if the consultant will squeeze you in" - as if she was doing me a favour.

I ended up spending a good couple of hours in the clinic, waiting (hardly helpful with the current situation), before the consultant called me. She was great, it did not appear that she hadn't been intending on seeing me. She also apologised that this scan wasn't done at 16 weeks, but "for some reason it was cancelled". I explained that had not been my choice.

It is a transvaginal scan, for anyone wondering what is involved. It was actually much less traumatic for me than a smear, and she was able to tell me my cervical thickness there and then. Thanks to my research, I knew instantly that this was nothing to worry about and my mind was put at ease (less than 25mm at 16 weeks is a concern, mine was over 40mm at 20 weeks).

However, I would like my experience to be a warning to everyone else. If your cervix IS thinning, the consultant expressly told me there would be no symptoms. If you are at risk and you experience similar "care" to me, you could theoretically lose your baby thanks to their negligence. Of course, a cervical stitch isn't a guarantee you won't lose the baby, but if you need one and don't know then you're in a much worse position. So please, anyone who has had LLETZ treatment PLEASE push for this scan and REFUSE any suggestion of turning these appointments into telephone appointments or cancellations. It could be crucial.

Phiphi123 Sun 24-May-20 15:07:42

Thank you so much for sharing your experience @lumpydaisy I have honestly been beside myself all weekend and cannot shake the anxiety about this. By any chance please can you post a link to the NICE guidelines I can quote at midwifery on Tuesday? I’ve found some trust specific literature but nothing on my own NHS trust and can just feel that this is going to be a battle. I am willing to go and get a private scan next week if I don’t get anywhere, I just need peace of mind about this

lumpydaisy Sun 24-May-20 15:27:01

@phiphi123

Sure, the most relevant bits of info (and what I took with me to argue) are:

NICE guidance NG25

Section 2.1.4.1 (page 29 of full guidance) defines women who have had ANY amount of LLETZ as being at increased risk of premature labour.

Recommendation 1 (page 18 of full guidance) states that women at increased risk of preterm labour should be given information and support as early as possible, both orally and in writing, should be told about the symptoms and signs of premature labour, and should have her care explained to her.

Recommendation 5 (pages 18-19 of full guidance) states that a woman who has undergone LLETZ and in whom a transvaginal ultrasound scan has been carried out between 16+0 and 24+0 weeks of pregnancy that reveals a cervical length of less than 25 mm should be offered cervical cerclage.

Without performing said TV ultrasound scan on women who have undergone LLETZ, a shortened cervical length will not be identified. Therefore, surely, all women who have undergone LLETZ should be given a TV ultrasound???

Full guidance at www.nice.org.uk/guidance/ng25/evidence/full-guideline-2176838029

JSLACEFAMILY Sun 24-May-20 15:46:00

@lumpydaisy this sounds so similar to what I have been going through. I had to argue so much to get my scan done. I dread to think what would have happened if I hadn't pushed. My length was 22.3mm at 14 weeks!! When I finally had my stitch the surgeon said " well it was inevitable that you would need this as you had 20mm removed at your lletz). It just seems crazy that so many trusts don't check if you've only had one.

Glad you didn't need intervention.

@Carabu1 definitely push to be scanned some where between 14-16 weeks. Fingers crossed you will be fine but it's best to get checked. There are other options as well as the stitch. Some people just have the progesterone. I decided to have the stitch but the consultant also let me have the progesterone too. Xx

Carabu1 Sun 24-May-20 16:33:08

@lumpydaisy

Carabu1 Sun 24-May-20 16:36:42

@lumpydaisy thank you so much for this! I’m so sorry your care sounds like it’s been so poor - but tbh not surprised, because as I say I’ve some truly horrific nhs ‘care’ in my time which is why I wanted to suss out early what I SHOULD be getting and fight for it! The nice guidelines are so helpful - will def be armed with them at booking appt and insist they at least scan at 14-16 weeks. If they won’t, I’ll guess I’ll pay to have it done privately. Ugh, it just all feels like such a battle. I know the nhs is under serious pressure atm but I do so resent having to battle and hassle for seemingly everything. I have no idea how people without the language skills/confidence to do that ever get anything. Maybe they don’t, which is awful.

TenThousandSpoons0 Sun 24-May-20 22:04:07

@lumpydaisy great info, sounds like you’re really well informed.

But - those NICE guidelines are from 2015, and they don’t make it at all clear about the importance of the depth of excision. A single LLETZ under 10mm does not have an increased risk (on more recent studies) - I really think it’s important to clarify because there are lots of women who have had this done, and it’s important not to create unnecessary anxiety. (To note - women with previous LLETZ are more likely to be smokers, which puts them at higher risk of PTB because of the smoking and not necessarily the LLETZ - gets a bit complex).

In saying that of course of course everyone should be seen, have it discussed, have the depth of excision looked at and scans organised as needed, and I’m sorry everyone seems to be having difficulty getting the care they need! It certainly sounds like your care wasn’t up to scratch, and this definitely seems to be something that midwives don’t know too much about and can sometimes brush off.

OP - try not to worry too much - just calmly insist on finding out the depth of excision and on your scans if needed - again chances are very very very high that everything will be fine.

lumpydaisy Sun 24-May-20 22:16:04

@TenThousandSpoons0 those were the most recent guidelines related to this subject. There was an update more recently, but the only change related to whether or not to offer progesterone pessary.

Re the depth of incision:
Maguire et al. 2019 (Ir J Med Sci. 2019 May; 188(2):579-581) - "Despite having a lower mean depth of excision, women with CIN 3 comprised the majority of those who experienced preterm delivery." I.e. a lower depth of incision did NOT mean lower risk of preterm birth.

Kitson et al. 2014 (Eur J Obstet Gynecol Reprod Biol. 2014 Sep; 180:51-5) - "Women who had undergone at least one previous loop excision had more than a threefold increased risk of spontaneous preterm birth compared with their matched controls. ^However, no relationship between volume or depth of cervical tissue excised and subsequent gestation at delivery could be demonstrated.^"

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