Hi there, I have been super anxious since I received my smear results. High risk HPV and changes (letter didn’t specify what level). At 42 this is my first abnormal smear. I’m Married and with the same partner for over 20 years so I’m thinking I must have had HPV unknowingly for a long time. This freaked me out as I thought I must be higher risk if I’ve had it for so many years. I decided to have a private consultation last night as the thought of waiting 8 weeks was torturous. I had a colposcopy, I was so nervous I should have asked more questions than I did, he told me my smear results were low grade but when he put the vinegar solution on he didn’t confirm if this was his opinion too. He took a biopsy and I bled a lot. He also said I have a cervical erosion. This was mentioned to me a few years ago but I thought it had since resolved itself. I’m now waiting for the results. Does everyone get a biopsy as standard or would this indicate that my changes were more advanced? I’m annoyed with myself I didn’t ask these questions but the appointment was a complete whirlwind.
Hi Lynnie, first off I totally understand the anxiety and how it can mean you feel you don’t ask every question you should and then you’re left to worry about not having those answers!
I’m not any kind of medical expert, but just from my own understanding of also having had a HPV positive smear test, I don’t think you need to be any more concerned just because of the circumstances of your age and monogamous relationship. My understanding is that HPV can lie dormant for a long time, so yes, your initial infection may have been years ago, but it doesn’t mean that it’s been doing anything all that time.
I also think a biopsy must be standard if there are cell changes present at all - and cell changes are just that, not necessarily sinister in themselves. The biopsy will determine if you need treatment to get rid of them, just so they can’t cause problems in future. Cervical erosion also automatically sounds more sinister than it is. My understanding is that it’s pretty common and often doesn’t cause women any issues and they don’t know they have it until something like this brings attention to it.
I’m very aware that I’m sitting here telling you calm, sensible things when I’ve been anything but calm and sensible dealing with my own situation lol - don’t be afraid to pick up the phone and get expert answers to questions you forgot to ask. Consultants or your GP will understand that it’s a lot to take in. Sometimes we don’t know the right things to be asking at the time.
I hope things go well for you and you get a good resolution as quickly as possible!
Thank you for your reply. I wasn’t aware that HPV can lie dormant so that does make me feel a bit better. I go through rationale phases and then the what if’s creep in. I find it so frightening that some women on here have had normal smear results but their biopsy results have come back as cancer. It’s going to be a long two weeks! My dad passed away unexpectedly 18 months ago, the grief plus the worry of my mum who isn’t doing great on her own has caused enormous amounts of stress. I wonder if this has perhaps triggered HPV to return.
I hope everything is okay with you. Have you had results? x
I’m not sure how accurate this is, but just anecdotal stuff that I’ve heard or had said to me by non-experts has suggested that stress or anything that kinda lowers your immune system can make you more susceptible to HPV rearing its head. Although getting seems to be pretty much a guarantee for anyone who doesn’t live under a rock and who has any sexual contact at all, so unfortunately it seems like who it causes problems for is more or less luck of the draw.
I’m sorry you’ve had such a tough time of late and def hope getting some answers quickly can at least give you one less thing to worry about it. I know this is easier said than done, but I’d try not to worry about stress itself being a factor because that will only makes you worry more - try to focus on the fact it’s small changes that have been caught early when there’s lots of time and ways to intervene.
I had a very vague letter back weeks after my biopsy to say it found abnormal cells and I’d have to have treatment, that was literally all it said, so it caught me a bit off guard even though I should have expected abnormal cells because the consultant could see them and that was why he was taking a biopsy. My smear had said low level and then the consultant said amount-wise, it was tiny and he thought the biopsy had “accidentally” removed everything anyway. The biopsy results came back a little higher though - CIN2. Honestly, it did freak me out, but I know I should be focusing on the fact it could be worse and isn’t. I go for another colposcopy on Monday and might have to have treatment then - I don’t actually know. x
Good luck for Monday, it seems to be quite common that the biopsy grading is higher than the smear results. Can I ask did you bleed a lot after the colposcopy/biopsy? I bled a lot! I was actually quite shocked when I stood up just how much blood there was. It did get under control pretty quickly and by time I drove home it was just light spotting. I was wondering if that was normal though?
Yeah, it wasn’t so much that I was worried as such, maybe a little, but I knew I was probably just over-anxious - I’d been told to expect “spotting” and what I got was definitely much heavier than what I would class as spotting. It’s always been totally normal for me to have lighter periods - not to “abnormal” levels, but definitely lighter and it was probably for that first day at least initially more blood than a normal for me period and then easing. Day two was more what I’d consider spotting and then there was maybe the tiniest amount sporadically for a day or so after that and then nothing and my periods have been totally normal for me since.
Have my second colposcopy in a couple of hours and my anxiety is getting the better of me - I think it’s part fear, part not knowing what’s going to happen as I’ve been told I might need treatment, but won’t know until I get there if I actually do or what kind. (HPV positive smear with “tiny amount” of low grade cells changes, biopsy was said at time to have removed everything, results came back CIN2)
I’ve tried so hard not to think about it or show just how much it’s getting to me, but I dissolved into tears on my bf this morning after not sleeping at all and I can’t face breakfast.
I hate the thought of getting tearful at the hospital cos if I start, I know they’ll be nice to me and that’ll make me worse…
I can completely understand your anxiety. I am an actual wreck waiting for my biopsy results.
All your news sounds positive so far and in a couple of hours you will get the answers you need. I would write down all your questions and take them with you. I was in such an anxious state at my colposcopy that I didn’t ask half the things I wanted to.
Let us know how you get on.
So I got there and all the staff were lovely again, absolutely brilliant - one older nurse actually told me how she had CIN3 changes in her early 20s and had never had another abnormal smear in 20 years since. She also tried to give me some context around figures in my area, just how common abnormalities are, how much room there is for intervention, and how few cases of actual cc - which I feel bad saying in a forum like this because I know that’s cold comfort for those who do end up with less positive news.
When I went into the actual room, it was the same male consultant as I saw before (who I really liked), but there was another woman too - I feel like I was told she was a registrar, but I wasn’t really in much of a state to take in details.
I feel like the decision had already been taken to go ahead with treatment, although maybe if I had said I didn’t want it, the option would have been there, but I think I had already decided not to hold off if I had to have it because while I know they wouldn’t opt for just monitoring if there was a risk, I wasn’t sure that mentally I could cope with it all hanging over me and maybe just delaying the inevitable.
The consultant said he still thought he had removed everything with the biopsy, but they would look and see and it would be “belt and braces”. He did say they could wait six months and see, but that my age (over 30) made them less keen.
I dissolved into tears and couldn’t really speak because I wanted to keep it to at least just tears and not burst out sobbing. I knew I had to have it, but I just did not want treatment and was really scared about it after reading about other people’s side effects post-lletz.
The consultant whose usual manner is kinda blunt and jokey, in a reassuring way I like, was really kind about it. When I’d first sat down, he was being funny like: “You needn’t look at me like that, it’s not my fault, I’m here to fix it!” But then he seemed to get that I didn’t want to make a fuss and when he’d explained everything, he was just like: “Right, let’s get it over with, pet.”
He and the other woman thought the colposcopy showed everything “looked” OK, but because my changes were CIN2 which are deeper, they decided to burn off a layer of cells as a precaution. So not full lletz where they cut away part of the cervix. I was warned the local anaesthetic would be the worst part - and it was, but it wasn’t bad. Similar to getting my Covid jab, maybe not even as much as that. The noise of the machine then isn’t great, but the woman turned it on without doing anything so I’d be prepared. I’ve no idea how long it took, but not long - minutes, probably less than five.
It feels weird after. I’ve not had cramping yet, but it otherwise feels like I’ve got my period. The feeling also made me worry that when I stood up there’d be a gush of blood, but there’s been nothing so far.
The only thing I was specifically told was no sex for probably two or three weeks - I assume the other stuff around exercise and baths/swimming also applies. I mentioned my concerns about complications because of what I’d read and she put it in context for me - she said in five years, she had seen one woman have to go back to them with “a bit of bleeding” which they sorted with another little bit of treatment similar to what I’d had. And she said there will be some they don’t see who have to go to GPs with infections and they get antibiotics, but she said she wouldn’t expect any issues and if there was something, it would be totally fixable. I felt better after that.
But I also still feel shaky and tearful which is just being overwhelmed. I hope my experience does reassure someone going through the same thing though.
That sounds like a very reassuring appointment. Take it easy and do something enjoyable now and let the worry slip away.
Happy to hear your appointment and procedure went so well! I know how worried and anxious you were by your posts so I’m sure you are so relieved to have gone and now have it over and done with I’ve never read about or heard of burning off a layer of cells instead of the LEEP but that is a nice option it seems like! I’m not sure we do that where I am.
I also have CIN2 changes, my biopsy results were posted 1.5 weeks ago and I have an appointment this morning at 9:30 to meet with my gyno…he will go over test results and discuss treatment options and what he thinks is best to get rid of the cells. I will admit I am nervous, but I’m also ready to go and get it over with. I do believe this is just a consult, however. So I probably will have the actual treatment another day.
I’m glad you are doing better and I hope you have an easy recovery too! Thank you for sharing your story and experience, it def is comforting to read positive stories!!!
That’s great news it went well. Was it Cold Coagulation treatment you had? I had that done in January for CIN 3 changes. Although it’s called Cold Coagulation it’s actually really hot and burns the abnormal cells. I’ve been told I can only have it once, it would be LLETZ next time if my 6 month follow up post treatment doesn’t go well. Hope you are feeling ok now.
I wasn’t actually told it was cold coagulation, it was just explained what it would do and they didn’t mention anything about only having it done once - they seemed fairly confident I would get the all clear in six months, probably because it was such a tiny amount, although I guess you never know what could happen in future.
Can I ask how your recovery went? I was told it would take 2/3 weeks and I may have some watery discharge, but I’ve not really had anything so far. I had some period-like discomfort on the day, not as bad as cramps but just feeling tender and uncomfortable, then I was fine the next day apart from some tiny stinging pains in the evening and I seem to be fine again today. Some tiny flecks of something rust-coloured on day 1 which may even just have been dye from the colposcopy rather than blood. I’m just wondering with having got away with such a small amount of treatment if I’m maybe waiting for something that won’t happen - I’ve been using sanitary pads in case I get caught out, but don’t really fancy three weeks of that unnecessarily lol!
I’m guessing it was Cold Coagulation treatment as Cold Coagulation and Lletz are the two main treatments for abnormal cells. They were optimistic about me getting the all clear after six months but I like to think about every eventuality. I asked what if I need more treatment and that’s when they informed me that it would be Lletz next time. I don’t want to get my hopes up just yet as I’ve been disappointed before. When I went for the colposcopy and biopsies the first day I was told everything looked normal and the dyes didn’t show any abnormal cells so I left there feeling thrilled and then the biopsy results came back as CIN 3 changes so I was shocked. Apparently my abnormal cells are deep inside the cervix that’s why it looked normal on the outside and the dyes didn’t highlight the abnormal cells. I was gutted so I don’t want to get my hopes up that one treatment will be sufficient until I get the results.
I found the Cold Coagulation treatment fine. I was so scared I’d feel the local anaesthetic but luckily I didn’t. During the treatment which was very quick I had period like cramps in my tummy but no actual pain where you’d expect to feel it in the area treated. Even when the anaesthetic wore off I never had pain. My recovery went fine, I think I was on such a high that I had survived the local anaesthetic and treatment!! LOL! I had very little discharge, I had much more after the biopsies. I think the biopsy was slightly more painful and took me longer to recover from and I had to wear a sanitary pad for a while after that but after the cold coagulation I was fine. I had my six month follow up appointment last week so I am waiting on results now. How are you doing now?