Difficulty finding abnormal cells after abnormal smear and LLETZ procedure

I wonder if anyone else has experienced the same?
I had an abnormal smear result in March 21, showing severe dyskaryosis. I was booked in for LLETZ procedure and abnormal cells were seen at the colposcopy following the acetic acid test. The histology result did not d as how any abnormal cells, so I was invited to another LLETZ procedure and this time they went higher up. Again the histology did not d as how any abnormal cells. I have now been recommended to have a laparoscopic hysterectomy. Would it not be possible that the LLETZ procedure removed all the abnormal cells and that is why my test results have been normal? It seems a very drastic thing to offer a hysterectomy when there have been no abnormal cells detected on histology. Has anyone else had the same quandary?

Dear Mel,

I don’t have any experience of this situation, but I did not want to simply pass you by. I really think you need to be able to talk to someone about this and if appropriate get a second opinion. This is because it seems no one has taken the trouble to make sure you understand what is going on and why they are making the decisions they are. I THINK from what you’ve said that they are saying the abnormal cells are located past the boundary of the LLETZ procedures - further up into the cervical canal - they will be looking in the histology for a mass of abnormal cells, which the colposcopy says are definitely there, with ‘clear margins’ around them, to be sure they have got everything abnormal. This is not happening.

There is an ‘Ask the expert’ option on the Jo’s Trust main page: https://www.jostrust.org.uk/get-support

It might be a good idea to have a chat with someone about your situation and what you’ve been told.

X

Thank you Jacks133 I have taken your advise and sent a message to the expert on this forum.

I had a similar experience. I had a Lletz treatment as I had stage 3 CIN and CGIN and the results came back clear. They left me 6 months and my smear showed I still had stage 3. I asked why they wouldn’t have shown up in my first results and I asked if they had got my results mixed up with someone else. I’ve had another Lletz since then and they’re still there. I’m due to go in for my 3rd in 2 weeks (I don’t have much of my cervix left) so hopefully they get everything this time. They said that they’re not willing to give me a hysterectomy as I’m only 38 and don’t have any family. I don’t know what the options are if my 3rd treatment isn’t successful. I’m hoping to find out soon. I hope you’re okay x

@Mel
I’m curious what the experts said. I’m in similar situation. Have had negative tests for HPV and no abnormal cells for seven years now but am recommended a hysterectomy. Doesn’t make sense to me either but maybe it’s like what @Jacks133 wrote.

Tnt1 - you couldn’t be recommended a hysterectomy without having any problems. Please, like Mel, get on to your health care professional and ask them to explain exactly what the situation is and why they want to do a hysterectomy. If you don’t understand what they are saying (sometimes they use language that frankly sounds like a code!) tell them you don’t get it and ask them to explain again. No woman should be having gynae procedures without knowing exactly why and being happy that the right course is being taken. X

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@Jacks133 thanks for responding. It’s due to histology of ASGUS and HPV positive 7 years ago.
What I’m unsure of is the hysterectomy now having had normal paps, neg HPV and ECC every six months for past 7 years. Doctors want to be safe? I’m scared of the surgery.

Quite - if you have normal paps, neg HPV then there appears no reason - so there must be something else that’s an issue. Please talk to your health care professionals. You must be happy with any course of action taken on your body.

Nothing else. Just the history of abnormal glandular cells and HPV 18 which Is the reason for the recommendation for hysterectomy now that I’m done with kids. Been through the LEEP and cone and colpos which seems to have “cleared” everything but the oncologists still have this recommendation. It’s the same guidance from the ASCCP. But really want to know if others have the same recommendation for hysterectomy in similar situation. Maybe it’s a difference in care and medical treatment/recommendations in the US versus UK? I am in the US and just scared of the recovery and if it’s the choice I want or just take the chance and wait and see if i develop anything else. Thanks for listening.