I do need some advice from you and I would very much appreciate responses to this. My smear results came back as moderate dyskariosis (results: wait and come back in 6 months for another colposcopy) and were then upgraded to severe dyskariosis at the MDT meeting (changed result to LLETZ suggested). My colposcopy and biopsies showed nothing (no CIN, no CGIN). A private clinic smear revealed borderline abnormalities only. I have now written to my consultant and she still advises LLETZ ttreatment. I am scheduled for a week's time. Now my question is should I have LLETZ treatment or not? I would like to avoid being overtreated. In her email, my consultatnt has also mentioned that about 10% of borderline changes go on to develop into high grade CIN. Please could you tell me what you think about this and what you would do in my situation? Maybe some of you have been in a similar situation. I have not had children and I am keen to have them and do not want to introduce any unnecessary complications for future pregnancies.
Thank you very much! I appreciate your time and concern! xx
I feel for you, no wonder you're confused with everything that's happened. You mentioned you've had a smear done privately, but you could also request another colposcopy on the NHS in the form of a second opinion on the basis that what they've disucssed at the MDT conflicts with their biopsy results. You can do this either through the consultant or speak with your GP and ask to go to another hopsital. If you go thris route, you can always ring the colposcopy clinci and see if you can the LLETZ appointment put back to buy you more time.
Borderline changes and CIN 1 can go back to normal, but this is less likely with moderate or severe changes, these really do need to be treated. One LLETZ wouldn't necesarily affect fertility, as they can put stiches in the cervix during pregnancy if needs be, but I can totally understand that you want to check if you even need to have this procedure.
Punch biopsies during colposcopy are small and so it's possible abnormal cells can still be there. Sometimes a colposcopy can look normal even to an experienced colposcopist and yet there may be abnormalities not visible to them (this has happened to me). I'm not saying this to alarm you, just to show that actaully getting another opinion on the NHS at another hopsital may help you in your decision.
I don't know this helps at all, but I didn't want to read and run. I know what it's like to worry and to appreciate having thoughts or even just a supportive message from someone else.
I wish you all the best x
thank you so much for your comments. It's great to receive this reassurance from somebody who has gone through a similar experience. Your advice is most helpful - I am booked in to see my GP on Monday and will request another colposcopy elsewhere. Let's see what he says. I'll try to manage postponing the LLETZ appointment too. Hopefully this will work out. I am not against treatment per se, however, I want to make sure that I do need it given the potential negative consequences. I understand a stitch may be an option, however this will have to be put in during GA which is risky, particularly when your're pregnant. I will make sure to keep you updated.
I appreciate your help and hope everything turns out well for you, too. xx
Hi Anne, Sorry you're case hasn't been so clear cut. My experience is a little different as I had abnormalities inside the cervical canal but although my punch biopsy found CIN3, the LLETZ found CGIN that couldn't be seen by colposcopy nor did it show up in punch biopsy. I suppose one way of viewing LLETZ is not just as a treatment tool (i.e removing cells), but doctors use it to diagnose various levels of abnormalities and stage more serious conditions, (i.e its a diagnostic tool). In your case, given that they have come across an abnormality in smear but have been unable to find it, I'd imagine LLETZ would allow them to find any potential abnormality, or give you the all clear. In that case, it seems to me that they are being very thorough. Having said that, if your instinct is to seek a second opinion or go private, do go with that.
Regarding pregnancy etc, this was a concern for me, but although I had quite a large LLETZ biopsy (1.6cm in depth) the clinic assured me that although the risk of pre-term delivery and potential issues is slightly higher, its a) better to have removed anything before it spreads to a point where more invasiva treatment is necessary and b) its minimal and lots of women have LLETZ a further 1 or 2 times and are fine. For them its very routine and straightforward and carries v minimal risks. Harder to see it like that when you are the patient!!!
Hi Anne B,
I'm glad you've got an appointment to see the GP on Monday, please let me know how it goes. I also wonder whether within this it might be possible for them to check your original smear result again, just to be sure.
I totally understand where you're coming from. There's a huge difference between having treatment when you need it and when you might not. It's difficult going through all this without having confusuin about results thrown in too, I feel for you.
Take care and all the best for Monday xx
PS Thanks for your good wishes :-)
Thank you so much for your encouraging words! Louise, I've been thinking about your comment that LLETZ can be used as diagnostic tool. Viewed from this perspective, if this excision would allow me for sure to know what is going on and sort out the problem at the same time, it seems a good thing. Twilight, yes, my initial smear results had been reviewed at a MDT meeting by several experts where the results have been upgraded from moderate to severe dyskariosis. The initial suggestion following the moderate results was waiting and coming back for another colposcopy in six months time, however with the upgraded results treatment is suggested. At the moment I'm thinking I should maybe go for the LLETZ after all to be on the safe side and not having to worry about potentially even more invasive treatment should that be needed later on. As you can see I'm a bit torn. I'll talk to the doc again tomorrow and will let you know. Thanks so much both for your comments - I am finding them very helpful. I hope that everything goes well for you too. Do keep me updated on your stories. xxx