Hiya this is my first post here
In April I had my 3rd smear. My first two were normal. 8 and half weeks later I had a letter saying it had shown low grade changes and positive for hpv and I needed to go for a colposcopy. 2 weeks later I had this done and she said It looked low grade if that it may just be hpv. She did a punch biopsy. 3 weeks later I’ve received a letter saying the biopsy showed CIN 3 and in 4 weeks time I have to go for a loop biopsy. I just don’t understand how she could be so sure it was mild. Is there any chance it could be cancer or does the punch biopsy results rule that out? I’ve researched online and I can’t find anyone who has been in this situation. Really concerned about the length of time this has been going on aswell
At my colposcopy I was told everything appeared normal as the two dyes they put on your cervix didn’t turn my cervix white. If you have abnormal cells the two dyes (acetic acid and iodine) are meant to highlight abnormal areas i.e turn them white. Nothing happened my cervix. I had biopsies taken just to be sure but I was reassured everything looked normal and I had nothing to worry about. I was so relieved until a few weeks later I got my biopsy results in the post saying I had CIN 3 changes and I was booked in for treatment. I rang the colposcopy clinic to see what was going on and asked why I was told everything appeared normal. I even thought I had been mixed up with another patient. I wish I wasn’t given such hope on the day of my colposcopy appointment as getting the CIN 3 results was harder to accept. Anyway they told me that my abnormal cells were deep inside my cervix that’s why the dyes didn’t highlight them as they were not superficial. Apparently the biopsy is the most accurate diagnostic tool and in my case the smear test and colposcopy didn’t discover my CIN 3 changes the biopsy did. I think you shouldn’t worry about it being cancer if the biopsy showed CIN 3 changes. It sounds like it’s been caught on time and can be treated. If you have questions perhaps ring the colposcopy clinic and ask her why she thought they were mild. I wonder if she has a similar explanation to mine. It’s all such a rollercoaster of emotions isn’t it? I’ve always had normal smears so when this all happened I was so shocked and so worried.
Hiya thanks so much for your reply! Your experience does sound very similar to mine other than she could see a tiny abnormal area which I’m guessing is where she took the biopsy from.
I agree they shouldn’t make you think everything is fine when it’s possible to be a worse outcome.
I will give them a ring on Monday and see what they say.
Have you had the procedure to the remove the abnormal cells yet?
Yes I had cold coagulation treatment done in January. I went back for my 6 month follow up post treatment earlier this month and I’m awaiting my HPV/smear test results now. I asked if I could have another biopsy to be sure the abnormal cells are gone but was told I was just having a HPV test. This worries me a bit because if I am HPV negative the sample is not tested for abnormalities.
Yes that is so scary and I think it’s wrong! I didn’t agree when they changed it as it’s possible to have abnormal cells and cervical cancer and not have hpv. I’ve got my fingers crossed for you that everything comes back okay. If hpv negative I think you’ll end up wondering if there was abnormal cells though. It would be better if they always just tested for them both.
Yeah I know. I’ll see what the results say and if HPV negative I’m thinking I’ll go private and get another biopsy. I’d go every year if I could but apparently too many biopsies weaken the cervix which can have implications for pregnancies. I’ve not had any children yet so it’s a tricky one. How are you feeling about the treatment? Did you get a choice?
I think that’s a good plan and I would do the same. If the abnormal cells are deep do you think they could miss them and not remove them all? It seems different to most other peoples experiences to get a shock that it’s cin3.
I didn’t get a choice, no just got the letter saying CIN 3 and appointment for treatment and a leaflet on loop biopsy. I’m presuming that’s the LLETZ mentioned a lot on here but I’m not actually sure.
I’m not looking forward to it but at the same time wish it was sooner than just under 4 weeks away. More worried about symptoms after than the actual procedure as I had quite a lot of pain last time off just the punch biopsy
I asked if the cold coagulation treatment would get at the abnormal cells that were deep inside my cervix and I was assured it would. Cold coagulation burns them off whereas Lletz cuts them out. It is questionable how deep the treatment goes I think. I was so shocked to hear I had CIN 3 changes and I couldn’t understand how I went from normal smears every 3 years to CIN 3 after 3 years. It scared me. After the colposcopist told me everything looked normal I began to question if they had mixed me up with another patient.
When I got my letter with the biopsy results and an appointment for treatment I was offered cold coagulation or Lletz. I chose cold coagulation as I’ve not had any children yet. Apparently both treatments are very effective. However, if I have abnormal cells again it will be Lletz next time I was told, as I can only have cold coagulation once. On this forum most people have been offered Lletz instead of cold coagulation. Cold coagulation is used alot for people who haven’t had any children yet.
I just find it so scary like imagine if they hadn’t done biopsies on us because it didn’t look bad.
I’m exactly the same normal first two smears then this! I do know that it’s quite common for smears to be interpreted wrongly in the lab. They actually store them for years so wouldn’t be surprised if they looked at our previous ones and they weren’t normal.
Ah okay! No mine just said I was having that no other option. I haven’t had children either (I’m 31) but me and my husband have never wanted children and due to my other health problems I know I wouldn’t change my mind. So I’m lucky on that front i guess.
I just want to try and reassure from my experience as I had my smear in April which ended up to be CIN III and have had 2 procedures, and just over a week ago got positive news that it has been removed and I don’t need anymore treatment and just a check up in 6 months.
From what I have seen if it’s CIN III normally they have caught it earlier enough before it turns into anything serious, also I’ve been told it normally takes many years to turn into something serious.
If you want to read below my story (sorry it’s long) but you will also see issues I have faced throughout this process.
I had a similarish issue, have always had clear smears up to April this year, (I’m 34). This came as a huge shock as I’ve been single for a while now. I had my colonoscopy appointment 4 weeks after my smear test where they carried out the LLETZ (Loop) during the appointment, the consultant advised that it wasn’t that bad and was sure that it had all been removed and I wouldn’t need any further treatment, and would get results in 4 weeks. 6 weeks passed (chasing from 4 weeks from results - which I kinda started thinking all must be ok not hearing anything) to receive a text to say I had been booked in for a pre op assessment for 2 days later - yet at this time I had still not had my results, I then had to wait another 24hours to speak to someone to find out what was happening as there was no one medical available- so in an instant I started thinking the worst!
The consultant rang me the next day and explained it was CIN III and that the margins on one side was not clear had micro cells and I need another LLETZ but under general anaesthetic as they needed to go in deeper. He explained it’s nothing to worry about and not sure what the rush and urgency is about and in 40 years has never had it come back as cancer.
I went for the pre op and then had a call later that day - originally they wanted to do the surgery the following week but it was with a different consultant, and I had been told to make sure it was the consultant I had already seen to do the surgery, so I was booked in for 2 weeks time.
2 days later I got a call to say they had discussed my case in there internal meeting and they need to bring the surgery forward to 5 days time - so again panic set in but was also thinking if it is something serious then at least it’s being dealt with quickly.
I received the confirmation letter to see that I had been put under a different consultant, as it was a Saturday I couldn’t speak to anyone, I eventually found out on the Monday that I had been put under a different consultant as they was now not doing the LLETZ but a cone biopsy and the consultant I was under isn’t able to do this. So once again panic set in as after looking on this forum and google the cone biopsy is not a common procedure.
Fast forward to day of surgery, got to talk to the consultant, and all I kept hearing on the day is that they have put for my results to be sent back as urgent (within 2 weeks) - once again this scared me and I felt like they knew something but wasn’t telling me.
3 weeks after surgery I got my results to say that it had all been removed and I don’t need any further treatment and will have a follow up in 6 months.
I hope this helps, and if you have any questions feel free to message me.
Wow that sounds so stressful. It’s one thing finding out you have CIN 3 but geez all the extra stress and unnecessary worry you had due to lack of communication. You poor thing. At least you are out the other side of it now though.
Good luck with your treatment and keep me posted
I had a similar experience. My first two smears were fine. However my 3rd came back with high grade dyskariosis and HPV positive. I went for a colposcopy to which she said she was sure it was cin 2 but i had punch biopsies taken. Results came back as cin 2 but with gland involvement and was given the option to monitor or have lletz. Due to not having children yet I opted for monitoring. A few days later I got a phone call to say my case had been discussed at MDT and they strongly advised coming in for lletz as soon as possible. So that’s it all the fear and panic set in. When I got there she explained it was due to the gland involvement that they recommended as when they do a colposcopy they can’t see what going on below the surface. So I had the lletz and it came back as cin3 but I was discharged back to my gp. So in my head I’m trying to be positive and now I’m waiting for my 6 month check up which is due next month. The worry from
Thinking it’s gone from nothing to cin3 in 3 years is the biggest fear but as someone mentioned I keep being told it can take up to 10 years to develop in to cancer so that’s what I’ve been holding on to. This forum has been a god send reading other people’s stories and the support from everyone. It helps settle the fear knowing we aren’t alone x x
Sorry for such a late reply thank you so much for sharing your experience I can only imagine how stressful that was for you! I’ve got the loop treatment today fingers crossed that’s the last of this!
Sorry for the late reply thanks for sharing your experience. The waiting is the worst! Fingers crossed for you everything is clear now