I just wanted to try and get a bit more information - around 3 years ago I was sent for a colposcopy due to irregular bleeding. They didn’t find anything and wrote to my GP say to my cervix looked entirely normal. I had a smear test due at that time but didn’t go as I thought the colposcopy would have done the job…
Fast forward 3 years and I have just had a smear test that shows I have high grade severe cell changes, with a colposcopy booked in for Monday.
My confusion comes from how I went from having an ‘entirely normal’ cervix to CIN3 changes in the space of just 3 years?! Is this normal as I thought that level of change would take many more years?! Was it possible the first colposcopy missed something?!
Hello that happened to me I went from a clear smear only 2 years after to get CIN3. No idea why they say it takes so many more years I believe there is many women that go from clear smear to Cin2 or 3 in less than 3 years. Probably yearly smear would be a safer way to manage cervix problems.
Yes, a doctor who did a talk at a Jo’s Let’s Meet event, which I attended pre-Covid, explained that smears can miss things as the practitioner can only take a sample of the cervix. Things may get missed if, for example, there is just a very small patch of abnormal cells. Nevertheless, in the UK 3 yearly smears (up to age of 49y) will prevent most women from developing cervical cancer hence it is very important to NEVER miss smear tests - which was my big mistake (see my back story). From age 50-64y smears are offered every 5 years in the UK.
Thanks really helpful - I think my confusion was that it wasn’t just a smear I had 3 years ago, it was a colposcopy which I would have thought would have been able to detect any abnormal cells at that point! But they really must have just developed to CIN3 within those 3 years x
Apologies I didn’t read the original post properly. I’m not an expert but I would have thought it’s possible that even a colposcopy might miss something if there were just a very few abnormal cells. It’s even possible that the sample may have contained abnormal cells but if there were very few then they might have been missed in the lab. It’s not an exact science. At least now there is HPV screening so those women who are HPV positive get annual check ups even if no abnormal cells are picked up which I think is a big improvement compared to how it used to be.
Hi Joix - thanks so much for your response and I’m sorry to hear about your CC diagnosis, that must be really tough. Are you currently having treatment? I’m starting to doubt some of the info regarding CC being slow growing as I’ve heard from a few people now who seem to have had a diagnosis following years of normal smear tests xx
Thanks Jazza - definitely an improvement with the HPV screening now too. I really just wish that we didn’t have to receive the screening results in scary letters with the word SEVERE in bold! I have my colposcopy on Monday but it is such an anxious wait! xx
I’m just waiting on my treatment plan and start date. Hopefully within the next few weeks. I agree, I’ve heard of a few women recently in the same position, it’s very scary x
Just to follow up on the above, I had my colposcopy yesterday. I explained that I missed my routine smear 3 years ago because I had a clear colposcopy at the time and so didn’t think I would need the smear too - the doctor explained that I should still have gone to my smear as the colposcopy is done by eye so even if this is clear, the smear may not be as it detects abnormal cells that are not seen by the eye.
So, I feel pretty annoyed with myself that I’ve ended up with severely abnormal cells now (awaiting LLETZ results) when they could have been picked up/prevented if I’ve had my smear 3 years ago. But you live and learn!
Hi,
Don’t be annoyed with yourself. I’ve kept up with my smears every three years and I still got CIN3 changes. I went for my routine test last November. I was shocked I had CIN3 changes as my smear test was normal three years previous. You might expect CIN1 or CIN2 changes but CIN3 changes and so quick. It is interesting that you were told that the smear test is more reliable than colposcopy. I was told the opposite. I questioned my GP how I got CIN3 changes so quick and he informed me that my smear test three years ago could have missed the abnormal cells as my abnormal cells are deep in the tissue/cervix and were only confirmed by biopsy not the smear test or the solutions they put on in colposcopy. My cervix was so inflamed I couldn’t procced with the smear test and was sent straight to colposcopy. Your cervix should turn white with these solutions at colposcopy if there are abnormal cells, mine didn’t. Be grateful it’s been found on time and can be treated.
Thanks for your response wonderland - that’s interesting you were told the opposite. I guess the ideal situation is that you have both, but I thought the colposcopy was just a more detailed smear so didn’t attend the smear!
I did ask how the CIN3 changes could happen so quickly as when I attended my colposcopy 3 years ago they put the solution on and couldn’t see anything at all - whereas at my appointment yesterday I could see for myself the entire area went white immediately. The doctor basically said ‘sometimes it just happens’ which I guess I just need to accept. Just have everything crossed now for LLETZ results. Hope you are ok and have had successful treatment for your changes x
At my colposcopy the solutions didn’t even turn my cervix white it was only the biopsy that confirmed my CIN 3 diagnosis. My abnormal cells seem to be deep inside the cervix hence the solutions not turning white but as yours turned white they might be superficial and easier to get at and treat. Did you have the Lletz done right away? I am going back soon for my 6 month follow up appointment to have a repeat colposcopy and smear test and HPV test. I hope my treatment has worked and I don’t need more. It’s such a tough life being a woman, there’s nothing we can really do to prevent getting HPV or abnormal cells and it’s scary there are no symptoms. We are oblivious to it all until we go for cervical screening. Then we panic when something isn’t right.
Yes they treated it straight away with LLETZ - they ended up having to remove quite a bit of my cervix and said they thought it was all pre-cancerous cells although this could only be confirmed through the biopsy results.
Completely agree how tough it is - I feel like this has all just come out of the blue for me. I’ve been in a relationship for 10 years and had no idea I even had HPV, I felt quite embarrassed having to explain it to my husband even though he’s been great and I know most people have it. Then having to have such a painful invasive procedure just made me feel even more degraded! But at least that part is over now. I know I need to be more positive and grateful that this was all caught early x
Yeah and don’t be thinking what if about that smear test three years ago. I kept up with mine and still got CIN3 changes. Life seems unfair sometimes but lets be positive it has been found on time. After this health scare I want to be followed up every year as we’ve no idea what’s going in our cervix ourselves. I’m thinking of going private.
Honestly, they really can miss things.
I had 3 clear smears and one year after my last smear they discovered that I had stage 3 cervical cancer and it was only found due to continuing bleeding after giving birth.
Waiting for results of PET scan now after chemo and radiotherapy 3 months ago. I’m scared and annoyed too.
Hi, this was really useful to read and in a wrapped way (sorry laides), comforting to know I’m not the only one.
I had a lletz at 25, 8 years ago after my first pap found cin3. At follow up, I still had cin3 so had the proceedure again. I had 5 years of clear tests after that. Now, 3 years after my last pap, I have been informed I have cin3 again and need another lletz. It’s really worrying to go from clear to cin3 in 3 years, and even more so to know this is my 3rd occurrence. I have to have my lletz under general this time as apparently I don’t have much cervix left and the procedure will be too uncomfortable under local. I’m looking at a 4-5 month wait for the proceedure which I’m concerned about with the rate of cell mutation I’ve had.
I’m in a similar position, had cin 2 and 3 multiple times. I’ve had 3 lletz, 2 punch biopsies and 3 diaptions due to stenosis. I’m booked in tomorrow for a cone biopsy under general for multiple high risk lesions and con 3 and 2 areas. I’ve had 6 monthly and occasionally yearly smears for the past 6 years, im.31. Scares me how it comes back so fast
Hi,
Wow you’ve been through so much. It makes you wonder how getting screened every few years is indicated but you’ve been getting checked out every 6-12months and still had changes. That’s frightening. There’s so much to worry about with test results and treatment options and implications for future pregnancies. I’ve not had children yet.
No I haven’t either, we have been trying for 6 years to have a baby, but been unsuccessful. Having the cone under general tomorrow. Fingers crossed for this one. From speaking with tye consultant this is the last treatment I can be offered before hysterectomy.
