First, I want to say thank you all for sharing your stories. I have been reading this forum since the beginning of 2022 when I was diagnosed with HPV and high-grade dysplasia.
After finding out about my diagnosis, I went in for a colposcopy where my doctor told me she anticipated the abnormal cells to come back benign or low-grade, at most. After the biopsy, CIN 2/3 was found and I was set off into an emotional rollercoaster. I ultimately had to push off my leep procedure a bit longer than expected which tore me up inside with worry.
I had my leep procedure last week. For me, it really was all mental. Being awake during the procedure was the worst part, but I was lucky to not feel much pain. I get very bad period cramps, so I would compare the cervical numbing injections to be similar to that. The anxiety I felt the entire procedure and following waiting for my results was by far the worst part of it all.
I just received my biopsy results today and they have come back as CIN 2 and negative margins. I am so absolutely relieved and wanted to share this story for anyone finding themselves in an anxious time as a reminder to remember to not expect the worst. It is so easy to let our brains take us to the worst possible scenario (and trust me, I have been doing that for the last two months), but please remember to be kind to yourself.
I will go back for a pap in 6 months and am hoping to get positive news then.
Please do not hesitate to reach out with any questions! Take care of yourself! Xx
Hi Lauren
Thank you for sharing your story. I had an abnormal smear last year, was told CIN1 and put on a watch and wait for a year. I had my follow up smear about 6 weeks ago and colposcopy appointment 3 days ago. It has come back high grade changes!
They were going to do LLETZ there and then and I just couldn’t do it and opted for a GA. I feel awful that I just could pluck up the courage and get it done but my anxiety was through the roof. I’m now waiting for my appointment to come through which she said will be in the next 2/3 weeks and can’t stop my mind wandering to such dark places
Don’t worry Marie - having a GA will save you from the anxiety of the actual treatment experience. The thing is you’re having it for cell changes. Modern techniques are very good - they should remove them before there is a chance for it to progress further. No one is saying you have cancer, and I recommend you just ‘don’t go there’ in your mind at the moment. It’s not helpful for your wellbeing. You’re going to be okay. X
I know the feeling, but you are going to be okay! High grade does not mean cancer and that is very unlikely to change within 2/3 weeks. I completely understand what you’re going through, but just as you are letting your brain go to the worst case scenario also let yourself imagine the likely, positive outcome of your doctor telling you they got it all! Going under GA should help a ton with the anxiety during the procedure. You got this! Sending lots of love. Let me know how it goes. Xx
Thank you so much for the reply’s. It really is comforting to know that you’re not alone in all of this.
It’s such a scary thing to go through!
Will keep you updated x
I had an abnormal cell change with other HPV positive, biopsy result show CIN1 and had done a surgery to burn off the cell. Had my 6 months follow up smear but result showing abnormal cell again and need to go for colposcopy & biopsy. Feeling so emotional and upset. Was wondering will remove the womb and cervix get rid of abnormal cell and HPV forever. Thks
there is no surgery or treatment for HPV once you have it you always do, only thing known to ‘clear’ it is the bodies immune system when it pushes it into dormancy, sometimes the treatments can kick start the immune system but doesn’t always work… mostly it’s done by living a healthy lifestyle but that doesn’t always work either lol the body works in funny ways lol having a partial/full hysterectomy for CIN is usually a very last resort and would very rarely be offered unless you had CIN3 that kept coming back and they had tried other techniques it’s not normally considered, treating CIN with any hysterectomy has risk for developing Vaginal intraepithelial neoplasia (VAIN) which is when the abnormal cells form in the lining of the vagina or the vaginal cuff where the cervix used to be - you should speak with the doctor about the pros and cons of having one but it wouldn’t solve the infection or necessarily stop you from developing abnormal cells x
https://www.jostrust.org.uk/information/abnormal-cells/about-cell-change This page has data on how likely each grade of CIN has the potential to regress, to stay the same and to progress, may be worth having a read through the pages x
Hi iceblue, Thanks for the info given which let me know more about what’s going on. Will talk to my Gynae tomorrow when going for colposcopy and biopsy.
Hello iceblue is interesting that you say that treatment with Hysterectomy for CIN3 may end up with VAIN, that was also my believe after reading a few articles and people’s stories in here, I asked my gynecologist and he said definitely no that having hysterectomy doesn’t mean more chances of VAIN he basically said that for some people they don’t know why the HPV will cause them Vain and others no and hysterectomy was not a factor.
Just curious if you have this information confirmed by any specialist , they seem sometimes to give very contradictory answers to very important questions depending on the doctor, it looks like there is so much about HPV that they still not sure about.
It was actually my gynea who mentioned VAIN I hadn’t even heard of it before then lol I basically got a history lesson on how much treatments have changed over the years for CIN3 and that I’m lucky I’m not in the 60/70s or I’d of had a hysterectomy instead of a LLETZ lol I wouldn’t want that being only 29 but I asked out of curiosity if having one even partial would stop bad cells from forming in the first place, he said ‘yes and no it would stop you from developing CIN/CC since you’d lack a cervix but it puts you at a higher risk for developing VAIN/vaginal cancer mainly on the cuff where it used to be since the HPV can still react to cells in the vagina it’s rarer than CIN and CC but it can happen so you would be invited for vault smears instead of the normal cervical screening’ it mainly just increases the likelihood, especially if you have a history of CIN3
I find most of the time you can be told too much or nothing at all with these things lol x
Thanks I actually believe it makes sense to be at a slightly higher risk of VAIN after Hysterectomy without a cervix hpv needs to find somewhere else to attack so it is logical that it puts you at a higher risk, but yes it looks like different doctors have different options. Take care
Thanks for sharing your story, it made me feel better as I’m also in a similar route. I was diagnosed with High Risk HPV with high-grade (severe) dyskaryosis on 11th March after having my first cervical screening on 18th Feb. I went to a colposcopy on 24th March. Luckily the nurse and her assistant made the process as comfortable as it could be and I had LLETZ treatment on two areas of my cervix. The nurse said that she had removed one of them completely whilst she left some of the other. When I asked why, she said she will wait for the biopsy results. She also made me book another colposcopy appointment in 3 months with disregard to the biopsy results, saying that she will see me sooner if there is anything wrong. I have been waiting for the results over the past 5 weeks and this is truly driving me nuts. I keep calling the hospital every 3 days for the last two weeks but they always say it’s not back from the laboratory yet.
Also, I have been bleeding or having a blood-like discharge since the colposcopy which stopped only for 3 days over this time period. I know it is normal but prior LLETZ I had a pretty healthy menstrual cycle with no / very rare period pain whatsoever. Luckily, I am not having a pain at the moment but bleeding and general discomfort continues which also affects my mental well-being.
Sorry for writing it so long but how long did you wait to get biopsy results? In the NHS booklet it says it takes about 4 weeks. How did you cope with the uncertainty while waiting? I don’t want to think about the worst but can’t really as it took longer than it should. Would love to hear peoples experiences.
If it goes past 6 weeks they advise to chase up the results
So hopefully yours will come through very soon
I didn’t find it that bad either, CIN3 and no bleeding at all following the Lettz. Just a little discharge, I found it ok I just see it as procedure and would be more comfortable getting it out the way than a general. It’s really very similar to the biopsy just takes a bit longer, and a weird experience but just chatted away to the nurses.
I should get my results in the next few weeks
In terms of uncertainty waiting I actually don’t think about it, I see it more factual like it’s out the way now. Really no point worrying about it till the results come through. It would either be margins clear then all fine if not clear margins well that’s dealt with at that point I’m not going to worry till I know there is something to worry about!
Hi icedblue, had went for colposcopy and biopsy earlier, result will be out in 1 week’s time. Had talked and checked with my Gynae, got the same info which you share earlier. Thks.
Well it’s been a very long day. I had to be at the hospital for 11.30 and was on the afternoon list. I got there and changed into a gown with my dressing gown and slippers. The nurses were lovely the entire time even tho I was an emotional wreck and anytime anyone came to speak to me I just cried! They said I was third on the list. Spoke with the nurses and surgeon and anaesthetist and went down around 3.30. They couldn’t find a good vein so had a few attempts at that and honestly I think that was the worst bit! I was asleep in second and then it was over with!
I was up on the ward at 6 only to find my bag had been sent home with another patient. 4 hours later bag is returned and I got to go home
