Area too big for LLETZ at colposcopy, 3 biopsies taken

Hi, I have searched and searched but I can’t find any stories that start the way mine seems to be starting, so I just wanted to ask a few questions.

I had a smear in Dec 2020 which I never saw the results of because I moved house and the letter went to the old address, so I phoned the doctors and was told it was negative and I was being recalled in 12 months. Cue the confusion, but I couldn’t get any other answer out of the person on the phone. I even downloaded the GP app and there is no information at all there about any of my previous smears, just the dates I had them.

Anyway, somehow it got to 2023 and I still hadn’t booked a smear, so I rang my new GP and got seen in March, then 2 weeks ago, I got an email with an appointment for a colposcopy, then got the letter with the results of HPV positive and high grade severe dyskaryosis and the info about what would happen at the colposcopy. And the googling began - which I know isn’t recommended but I am glad I did because I am not daft and read the right things on google and it meant I knew what everything meant when the colposcopist was talking to me.

I quite calmy agreed to the LLETZ if it was needed, and hopped into the chair. She explained everything to me, and I watched it on the screen because how often do you get to watch stuff like that?! Anyway, she used the acid wipe and the vast majority of my outer cervix went white, I have an ectropian cervix so that bit stayed pink, but there was a weird lump right on the edge of the opening, I can only describe it like a popped bubble wrap bubble. Then she painted it all with the iodine and it all went yellow, with brown around some of the very edges. She explained to me that the area that she would need to remove was large, and that she wouldn’t be able to do it because she would need to go right above the visible cervix to get to it. She said she would recommend me for LLETZ under general anaesthetic instead, but she would send off 3 biopsies first and that she would need to wait for the results before she could refer me.

And then I came home and googled again, discovering that the white section was likely abnormal cells, especially as it then didn’t turn brown with the iodine. There were lots of little lumps that did turn brown, at the time I thought it looked like the solution was grainy, and now I feel like I might not be remembering it correctly and making it worse in my head, but I can’t shake the feeling that something was wrong and she didn’t want to worry me by telling me what she suspected.

So I suppose one of my questions is, did she have to send off the biopsies before I could be referred for LLETZ under general, or could she have just booked me in for it?

We were talking about holidays before the colposcopy and she said she wasn’t sure she should do it because really we shouldn’t go away within 4 weeks of the procedure, and she could just have a look then, and book me in to do it when we got back if it was necessary, so I feel like there would be no need for waiting for biopsies if it was just a case of not being able to get to it fully?

Basically, after what I saw on the screen and then waiting for the 3 biopsies, I am driving myself mad with not being able to find anything relating to those things on the internet, either anecdotally or in NHS guidance etc.

Has anyone got any experience of not being able to have a LLETZ because it was too big to see fully, and then having to wait for biopsy results before you could have it under general?

Thank you if you got this far!

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Hi Ribenaberry,

for support you’ve come to the right place! Welcome. I’m no expert and also I don’t know about UK practices as I reside elsewhere, but what I learned during my treatment process is that the pathology gives so much more precise information than what the eye can see at colposcopy that the doctors prefer to wait what the pathologist has to say. (I have also been surfing the internet from A to Z, as from last autumn I had repetitive LLETZ and a hysterectomy in the end.) Concretely, one of my LLETZ was done under general anaesthetic, and definitely the doctor had biopsy results available before she decided what she would do. So therefore this doesn’t sound weird at all. I know that waiting for the results is horrible. If it helps, had they done LLETZ already, you would anyway be waiting for the info as the piece they remove during LLETZ gets sent to pathology. By the way, it sounds very brave that you were able to look at the procedure, you have so much more information now about your body. I wish you good luck with the results and strenght for the waiting part! :heart: One last comment: LLETZ under general is a minor procedure, if I remember correctly I was asleep 20 minutes or similar, and I definitely got home just a couple of hours from waking up. All the best!

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Thank you so much for replying, everything you say makes absolute sense. It’s ridiculous because my sensible self says that there is nothing I can do til I know more, worrying and second guessing will not change the outcome, but 6-8 weeks feels like a lifetime away!

The cramps have been terrible the last 24 hours as well, I just want to skip to the end lol!

I hope you are doing well now.

Taking biopsies is a standard procedure in order to confirm the grade of abnormality, and at least 3 biopsies are taken to ensure they are looking at the whole area. Sometimes,if it is too large an area, they will do a lletz under GA because of an increased risk of bleeding, for example.
I’ve had two lletz procedures, one in colposcopy, and the second under GA - they’d removed a lot of my cervix the first time, and the colposcopist considered there to be too high a risk of bleeding, which they could deal with more safely in theatre. Apparently, I did bleed, but I was asleep, so completely oblivious. As soon as it was over, I had a cup of tea, and home pretty much within a couple of hours. It was absolutely fine.

Thanks for the support, I thought I would update for anyone searching similar circumstances, after what felt like a very long wait, the biopsies came back and all three showed HPV but only one showed any CIN grade changes, and that was CIN 3. I was offered cold coagulation instead as a treatment option, which I had last week. I am actually glad as apart from a very watery discharge that feels like I have wet myself slightly if I don’t wear a pad, I have had no bleeding, no other discharge, no cramps, no nothing really, it was painless and over in about 15 minutes. The worst bit was definitely the local anaesthetic but even that wasn’t awful.

The waiting is most definitely the worst bit! I have to go for a smear in December, and if that is clear then I am done. If it shows HPV then I have to go for another colposcopy just to check there no missed signs of changes.

The NHS absolutely rocks, at least here. From a smear in March to having had treatment in June is pretty impressive really (It would have been 2 weeks sooner but I had to postpone)

FIngers crossed for the smear results now!

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