I can't remember dates exactly but I had a smear last year that came back that I had tested positive for HPV and high grade (moderate) abnormal cells. I went for a colposcopy and the doctor did a biopsy (she later sent a letter saying she had done multiple biopsies and found cin 1 and 2). I then got a text to say I had an appointment. I hadn't recieved my results yet so rang them to be told I have cin 1 and 2. Went to the appointment in December to have the lletz done, at which point I was told by the doctor that unless the HPV goes, the precancerous cells will most likely keep coming back, she also tried to persuade me to not bother with the lletz and see if they go on their own as there is a chance they will. However I had already made the decision to have them removed and so she did that. After 8weeks I rang to get my results as I had not yet recieved them. And was told I have Cin 2 and Cin 3 and that I still have HPV. The lady told me it doesn't progress quickly and that they probably missed it the first time as they only take a small sample for biopsy and they only do one biopsy but I have the letter the doctor sent to my local gp saying she'd done multiple biopsies so how could they have missed it? Is that more likely than it progressing in less than 6months? I was given a new appointment for a 6month follow up smear for June but that was cancelled and now the hospital are not making any appointments for a while due to only taking Covid patients and emergencies. I'm starting to worry, how quickly can it progress to actual cancer? Everything I've read says it's unlikely but my results have really confused me. I've not really thought of it since I got the results but after being told that it could be the end of the year that they contact me for an appointment I'm freaking out a bit. Overthinking. I can't ring the helpline as I'm worried my children will hear and get worried so I guess I just needed to vent somewhere. If you got this far, I'm sorry it's such a long and pointless post, and thank you.
It is not pointless and rambling! Your fears are well founded and it is scary. I am not trying to worry tou further but both times I had CIN III rhey immediately scheduled me for a Lietz. CIN III is not thought to regress on its own.
Cervical cancer does grow slowly, but changes can happen quickly. I from a normal pap with HPV positive reading to CIN III in a year, which my doctors have said is unusual. Then after that Lietz, i had two paps over 8 months that were CIN I. I waited six months and at rhe next pap had gone from CIN I to invasive cervical cancer, stage 1a1. My doctor was surprised and said thst does not usually happen, but I am proof that it can. I am going to be fine; radical hysterectomy was my cure, but CIN III is nothing to play around wirh.
if you are worried it would be worth making a call and seeing if you could get an appointment sooner than six months. Just my thoughts and onviously biased based on my situation, which could definitely be rare.
Best of luck!
I haven't had a similar experience but, from everything I've read, anyone with cin3 cells should be prioritised. It's not unknown for admin errors to occur which is possibly more likely in your case because you've had inconsistent results. I think it is definitely worth chasing up and be sure to emphasise the cin3 part of your results to whoever you speak to.
Take care
x
Thank you for replying, I am sorry you had to go through such an awful time but glad that you are cured. I hope that you're doing okay as a friend of mine had a hysterectomy and she's still finding it pretty difficult.
It confused me because everyone kept saying it takes a long time to progress but like you said, there are exceptions to that like with everything. I am just worried because it seems like a short time for it to be cin1 and cin2, and them saying they took multiple biopsies for it to then be cin 3.. which I wouldn't even know about had I not insisted on having the lletz as that's what the appointment was for. But the woman on the phone told me they don't do multiple biopsies and that the cin 3 was most likely already there but too small that they didn't get it with the first biopsy. I didn't let any of it bother me as I was sure the whole point is to catch it before it becomes cancer but clearly that doesn't work in all cases and whilst I'm worried about my check up being postponed til whenever the hospital decides I'm also worried about pushing for it to be sooner and then catching Covid 19 whilst I'm there. I have 2 children and am a single mum, as in it's only ever been the 3 of us since I was 5months pregnant with my second child and my first was 11months old, they're with me 24/7 as I home educate them (we did this before the pandemic and my grammar and whatnot is usually better than this) and we hardly saw other family (pre pandemic, though maybe that will change) so I'm not sure what to do for the best. I will ring them again on Monday, as last time was a few weeks ago and they said someone would call me but they've not. My doctor hasn't even been in touch since getting my results, I thought that would be something they'd do, you know ring up and talk me through things, but apparently not. I'm doing it again, sorry. Thank you so much for reply. You haven't worried me further, your honesty is what I need and really appreciate so thank you. I will let you know how things go. Wishing you health and happiness and hoping you're safe and well. ❤
Thank you, I hope it was an admin error but will definitely ring up on Monday to chase it up as they've not rang me back like they said they would.
Wishing you health and happiness and hope that you're staying safe and well. ❤
Hi Marvelgeek
Sorry to hear you are going through this stressful time and especially with the lack of clarity, it certainly doesnt help... sounds like you have a good plan for what to do tomorrow to help yourself move forward 
I'd 100% agree with Jazza and Lauriebeth that it's a good idea to chase up on this, and as you've already seen with your appointment where you insisted on the LLETZ which diagnosed your CIN3, it really pays off to be your own advocate when it comes to healthcare. The NHS is wonderful and the care I've had has been superb, but there have been times when I had to step in and speak up and I've been glad that I did.
It is entirely feasible that your punch biopsy could have missed the CIN3 and resulted in an under-diagnosis prior to your LLETZ. That's exactly what happened to me. The punch biopsy is a sample the size of a grain of rice, mine showed CIN3 and then when I had the LLETZ that's when they discovered cancer.
After my punch biopsy results came back as CIN3 the consultant put me on the list to have LLETZ on general anaesthetic, and with covid, that would still not have happened yet and I still wouldnt have known about the cancer. As it was, I called them back and spoke to a lovely nurse about how anxious I was feeling and she supported me to find ways to tolerate the process under local anaesthetic 3 days later. The rest is history, and I am now sitting here recovering from radical hysterectomy which they think has left me cancer free. In a parallel universe theres a version of me who didnt call back and is still waiting for LLETZ under GA and thinking I only had CIN3.
Having seen the full pathology report from that punch biopsy when they accidentally left my medical file in my hospital room after one of their rounds, it actually said CIN3: cannot exclude microinvasion, which was never told to me by that consultant and it makes me so cross to think he would have seen that and potentially left me for months waiting for LLETZ under GA, rather than trying to help me find a way to get it done under local anaesthesia.
That sounds really scary and I dont mean it to be at all. Its just I often reflect now on how my situation would have played out if I had taken the consultants suggestion of waiting for general anaesthetic at face value and not called back and spoke to that wonderful nurse. So going forward I will always listen to that intuition or gut instinct and speak up when I dont feel right about a situation, and will encourage others to do the same.
I hope you'll be able to move your situation forward when you speak to them tomorrow, or at the least get some reassurance and a time scale. If you're in the UK then lockdown is starting to ease now and dentists will be seeing patients again in the next few weeks so I'm hopeful you wont be kept waiting a long time for your next appointment.
All the best x
Thank you so much. I needed this. I just got off the phone to the hospital, after first being told by a receptionist that her daughter had CIN 3 and HPV and that the doctor never told her daughter that it could come back so I must be wrong, she finally got a nurse/doctor on the phone who told me they aren't sure when they'll be making appointments as they've had to send off a request to reopen for appointments. She told me that it is likely they just missed CIN 3 the first time round as like you said it is a tiny sample they take. This makes me feel a bit better but her attitude when I told her about hpv still being present and the doctor saying it's likely to keep coming back BEFORE knowing it was CIN 3, she just asked me if I smoked. Then told me that the treatment will have removed the CIN 3 and that there are a lot of women in my position so it's not just me that's had my appointment cancelled. I already knew that, I'm not a self centred person who thinks the world revolves around me but that is how she made me feel. She then told me it wouldn't come back within 6 months so I told her that there is a reason they do the 6month checks and that's to make sure they removed the precancerous cells and to see that it hasn't progressed. She told me that's true but it's 'likely' they removed everything and 'only' 5% of those 6month check ups need further treatment. I hate to be dramatic but what if I'm one of those 5%. She told me that the risk of patients coming in and catching Covid 19 outweighs the chance of it progressing and I told her that as a parent I have been worried about that too but needed to know what was happening and did she have an idea of when they'll be rebooking appointments. She said hopefully the end of July, told me that 'there are women who actually have precancerous cells on their cervix and haven't been able to have the treatment yet so it's not just you waiting for an appointment' this bugged me as she is assuming they've removed everything without the follow up smear being done and acting as though my concerns are not valid. I actually cried when I got off the phone because of how frustrating these women were. But I am looking at the positive and like you, I feel thankful that my instinct was to speak up as I would have CIN 3 and not know it had I not been adamant about having the lletz. I always try to pay attention to my intuition. It has always served us well and saved us on several occasions.
Anywho, thank you and I hope that everything is okay with you. Good luck with your follow up in September, I'll be thinking of you. Wishing you health and happiness. Stay safe and well. ❤
Just a quick update. The thought to ring my gp to find out if they are taking appointments for smears popped into my head so I rang them and the receptionist told me that they are taking appointment for those who are at risk.. she said I fit into that category as they're taking those due annual checks and mine is a 6month one but that she'd need to get the nurse to ring me first. So the nurse is going to ring me on Wednesday morning. The receptionist said it may be that I have to have it done at the hospital as she can't access my files but that the nurse will know more. Am I right in thinking that having the smear done at the doctors would be exactly the same as what they'd be doing at hospital anyway? If so, fingers crossed it can be done at my gp as that would be much quicker than waiting for the hospital. And less risk of Covid too as I wouldn't have to travel on buses to get there. :)
Hi marvelgeek
Well done for standing up for yourself again with your colposcopy dept... it sounds so frustrating! I'm really sorry they made you feel this way and of course you realise it's not only your follow up that's been cancelled. Not that this information is any comfort to you! No wonder you felt so upset when you got off the phone. I'm sending you a massive hug x
I think the best comfort I would take from your situation is thank goodness you did have the LLETZ and as you know, the great likelihood is that this has removed the abnormalities. There is a small chance you would remain HPV positive or have developed further abnormalities, but it is a small chance. And you now know they're planning to open up again at the end of july, so theres every reason to hope you wont be waiting til the end of the year as you had first feared.
I didnt know whether to mention this, but I'm going to anyway, and you can either take it or leave it.... prior to my smear test I did take a private HPV test that was done by mail order for about £40. When this came back positive I discussed it with my GP and i wonder whether that helped speed up my initial journey through the system. Now, the reason I hesitate to mention it is, that the private HPV test is not officially recognised by the NHS (though my NHS results were consistent with the private test results), and also that if you do this private test and it comes back positive then you will understandably be even more distressed than you are now. But could potentially take the results to discuss with a GP and see if you can be bumped up the backlog list for recall.
On the other hand if the test comes back negative you could have some extra peace of mind while you wait for your next colposcopy. It really is a double edged sword, so I'd think carefully about whether it's a road you want to go down. But, it is a road nonetheless, and that is why I thought in the end maybe I should mention it, in case you were not aware.
Thanks for your kind wishes, the recovery sometimes feels like 2 steps forward and 1 step back, but I have been so lucky and I am grateful and every day counting my blessings x
Ahh, I missed your post about the GP smear test as I was writing my reply to your previous post. What a brilliant idea! Well done! Hopefully you'll get a good response from your call with the nurse on Wednesday.
Pat yourself on the back for a productive and proactive day :-D
All the best x
The smear done at your GP surgery will be exactly the same as one done at the hospital. In fact, it is more usual to be discharged back into your GP's care for your 6 month test of cure smear - it is where I had mine done.
Hope the nurse gets it sorted for you.
I feel so stupid, the doctor at my lletz appointment told me that there is no way of getting rid of the hpv and that it either goes on it's own or remains but after your comment I did a quick google search and see that the lletz does remove it. But because of what the doctor said I was under the impression that I have it and therefore the risk of precancerous cells returning or progressing was high so Thank you so much for your suggestion, that alone has made me feel more at ease and I'll definitely look into ordering a test. Thank you for your support, you don't know how much it means to me to be able to talk to you and have honest advice and support. I'm sorry your recovery feels like that but admire your positive outlook and spirit. You're an inspiration. I'm going to try not to think about this til the nurse rings on Wednesday, other than to order a hpv test, as there is nothing more I can do til then and worrying is just wasted energy. I know this but it's not always easy to practice. I will update after I've spoken to the nurse. Sending positive vibes and hugs to you as well. Thank you ❤ x
Thank you. I will update the post when I have spoken to the nurse. Wishing you health and happiness. ❤
Hey, it's not stupid at all! We all have to learn about these things as we go along, and it's like a whole new language. The idea of the LLETZ is that not only does it remove the abnormal cells but it reduces the viral load in the body, and for many people, then leads to being HPV negative (hence why they call your follow up smear a "test of cure"). So theres every reason to hope you will be HPV negative as a result of your treatment. I will be hoping the same for myself in september when I have my next test :-)
Hold off on splashing the cash on a private test as you wont need that if you're going to be able to have a test at your GP in the near future. That was just a suggestion for if you are stuck frustrated waiting for an appointment for several weeks, which hopefully now you wont be!
Totally agree to put this out of your mind again for now, do something nice for yourself this evening for having had a productive day, and put your worries aside knowing you've done all you can for now, and hopefully wednesday you can get the peace of mind of knowing when your test of cure will be :-)
I'm so happy that you've found support and help here on the forum. It has been a brilliant help for me and I'm happy to give back in any small way!
All the best x
Thank you Feeling the fear..
The nurse rang me and told me I wasn't due for a smear til the end of the year when it is 12months. I explained my letter said 6month check up which would be the 12th June. She then admitted she hadn't even looked at my records, she just assumed it was a 12month check up. Then she told me they can't do it because I'm under the hospital clinic so I offered to ring them and ask them to contact her as I really don't want to travel either,I explained about my Covid 19 concerns and whatnot and she told me she'd ring them. I kept trying to speak and she just spoke over me, said she'd ring me back after speaking to the hospital and put the phone down. When she rang back she told me she had left a message as she couldn't get through to anyone. I was fed up at this point to I didn't let her interrupt and explained that the reason she couldn't get through was because she'd rang the wrong number and had she allowed me to talk I'd have given it to her. I gave her the correct number and asked her to try again. She said she would and to ring back on friday to see if they get in touch and remind her to chase it up if they've not.
I will be ringing the hospital in the morning and then will ring the nurse at my local gp after speaking to them as I don't want to leave it to her if she's telling me I'll need to remind her about it.
Either way, I feel a bit better about things and hopefully tomorrow I'll be able to have an appointment booked at my gp.
I will wait til then to decide whether or not I need to buy a home hpv test as money is tight but if it looks like they'll be a long wait I will order it.
I really hope you're results come back clear, September seems like such a long way away. How are you feeling? Sending positive vibes. X
Just updating you to let you know I'm able to get the smear done at the gp on the 30th June. Yay! Was a faff getting it sorted but it's done now. Thankfully. Thank you all for your support and advice. Hoping you're all well xxx
Good work, MarvelGeek!
Thanks for the update, I did wonder what had happened with this, and im so glad you're booked in. Hope it goes well for you, best of luck! Xx
Glad to hear you advocated for yourself and got the test you needed. Best of luck!
