First IVF pregnancy after LLETZ 4 years ago

[Pud90]

Hi
Never posted on here before but was feeling alone as nobody else I know has had this issue.
Currently 13 weeks first pregnancy (IVF after many years unexplained infertility). Back in 2018 a routine smear found extensive CIN3 and I had to have a LLETZ under GA. They removed 17mm depth of cervix and I have unfortunately had persistent HPV and 6 monthly colposcopy/smears ever since.

Since my 12 week scan I have felt absolutely beside myself with worry about my risk because of this and have convinced myself I am going to lose the baby. I have been referred to high risk clinic but have not yet heard anything. The hospital has a policy that if you have had LLETZ but no other risk factors you get a cervix scan at 20 weeks.... but I am worried that will be too late. I have booked a private scan for 16 weeks which I guess is all I can do.

Has anyone else been in this situation where they had a large amount removed and what happened during your pregnancy? Any support or advice would be appreciated. :)

Hi there. Big congratulations on your news!
I don't have anything in the form of advice, but am in a similar situation myself. I had LLETZ (also under GA) in February this year, and was very surprised to conceive in April after a year of trying. This is my first pregnancy.

The whole process with my procedure back in Feb was a mess. I have no idea how much they took from my cervix. The communication was awful. Fortunately I haven't needed anything since, and I'm so sorry to hear what you've been going through. I had my first midwife appt last week (I'm currently 10 weeks) and they've booked me in to see the consultant obstetrician in a couple of weeks. I think they're going to do a review and check that everything looks ok, and if not, well, I'll find out! I was told there is a possibility for further surgery but I don't know anything about that yet.

Has your midwife been helpful? And did your 12 week scan look OK? I hate waiting to hear about referrals as it can feel like a lifetime!

Sending lots of hugs and support x

Thanks for replying@dontknowwhatimdoing... . As much as its a worrying situation its nice to know I am not alone!
Yes everything so far (fingers crossed) has looked perfect and the 12 week scan was a really lovely experience. I should feel grateful for how smoothly things have gone so far but I keep just waiting for it to go wrong and it to be taken away from me!
My midwife is semi-supportive. I have asked her to see if they can get me an earlier appointment given my history rather than waiting for 20 weeks.

I agree about the LLETZ communication- I obviously really needed to have it done and in my case I truly believe it may have saved my life. However I was not told anything about the risks in pregnancy and I also was not told that it was a large excision. In fact I remember asking the registrar and she said "oh no we barely took anything". It was only after the fact I learnt that It was massive. Annoying.

I really thought when going through infertility that I would be happy once I got pregnant but turns out you just shift the worry on to something else!

How are you feeling about everything? Try not to worry about the 12 week scan. I was dreading it on the run up but it truly was a lovely day and It is so nice to see the baby at that stage as it had changed so much!

I had a LLETZ a couple of years ago and they took a similar amount. Also had a cervical scan at 20 weeks and it was 18mm. Started on progesterone and they scanned again a week later by when it was 15mm! So I had a cervical stitch put in at just under 22 weeks. I'm now 31+4, all going well and counting down to my stitch removal in 5 weeks.

I agree that they really don't stress the risks when you have the procedure (I'd still have had it, but it really really is underplayed!). However, I hope this reassures you that it's not too late and it's likely that even if you have a stitch it will all be OK - I've had zero complications, have done nothing different other than really limiting how long I walk/stand for and skipping a planned city break abroad for one in the UK (still working, shopping, doing lots of yoga) and all is currently looking good. I feel like I read the whole internet on it before my stitch was put in generally the bad stories were where people didn't know it was an issue until it was too late - you know about it and can take steps to fix it.

Also - midwives don't seem to know much about it at all, but once you're talking to consultants you'll feel much more reassured!

@Mufflette Thanks for sharing your story! That is very reassuring. How did you find the stitch procedure itself? Did they do it quite quickly after the second scan? I agree that its best to know and be pro-active because then something can be done.
Nice to know you haven't had to be on full bed rest. That was something I was concerned about as I am such an active person usually (Also love yoga and it has kept me sane over the years)!

Yes, very quickly - I had the scan on the Monday morning, they discussed me in their team meeting and had a call first thing on Wednesday to come in on Thursday.

It was fine (especially if you're used to having to go in for regular colposcopies!) - the worst bit was not eating anything from the night before til I got lunch back on the ward after, if you have one, take snacks! It's a spinal anaesthetic so I was in theatre for the op and numb from the waist down for maybe 4ish hours, about 15 min procedure & home about 9pm (though it did look like I'd have to stay in at one point - had to wait to prove I could wee enough!). I had spotting for over a week afterwards but no pain from the stitch, just bruising from where they put the spinal block in.

I think the bed rest thing is trust-dependant (and more common in other countries esp. the US) - mine were happy for me to carry on as long as I avoid anything that puts pressure on my cervix. It's frustrating to not just be able to go for a nice walk, but could be a lot worse :)

Feel free to PM me if that is what ends up happening, I'm happy to give more detail!