From No Changes to HPV and CIN3 in 3-4 Years

Treatment for cell changes (abnormal cells)
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Hello everyone,

I’ve been reading this forum for a few weeks now but have had yet more upsetting news to the point where a nurse recommended I post here. Apologies as I know some of what I am about to say has been extensively covered, but I just didn’t want to hijack anyone else’s thread by talking about myself.

BACKGROUND: I have never missed my smears and have always attended when called. My smears (until now) have ALWAYS been clear. Last year I was unlucky enough to be due in May, the very first Covid-19 peak. I thought nothing of it and managed to get a smear test in November 2020. As all my previous smears required no further investigation, I was expecting the same again. Just after New Year I received a letter stating that I had tested positive for HPV and cell changes had been observed. The letter stated that I would be called for colposcopy within 8 weeks.

Obviously that didn’t happen. The pandemic has snarled things up quite badly in my part of the world. I called the nurse at my GP practice and was assured my changes were “very minor” but naturally I still felt out of sorts over the idea of having to wait longer and the nurse sympathised. She added a note to my file saying that I was very worried and would welcome a short-notice cancellation.

Several weeks elapsed and I’d heard nothing. I phoned the hospital and got told they were prioritising cases based on severity and as my changes were “minor” I’d be further down the order. I accept this as I’d want this to be the case if the shoe were on the other foot but we were into May now (a full year since my smear test was last due) so I was yet again feeling very distressed.

On recommendation from the hospital I phone my GP surgery asking to speak to the nurse again for some advice and…was made to feel like the worst human alive by the receptionist. She asked what I was calling for and accused me of not knowing there’s a pandemic and snapped “we can’t speed up the hospital!” In the end she relented (only just) and told me to phone back in 30 minutes and she’d put me through to the nurse. I didn’t bother because the way she spoke to me meant I actually spent the next 20-30 minutes crying in my husband’s arms and I really didn’t want to go through all that again. I haven’t been in touch with my GP surgery about this since.

FINALLY in early July I had an appointment with colposcopy. By now it was over 25 weeks since my referral. I actually had to go in on a Saturday the backlog was so bad. The nurses and the doctor at the clinic were all lovely and did their best to put my mind at ease. I was a little nervous because I have never had an exam of this nature with a male doctor before and my husband wasn’t allowed in with me (because of Covid) but a nurse was with me the entire time so it was fine. The equipment wouldn’t work at first so I had the awkwardness of sitting there with my bits out for a lot longer than anticipated but it’s ok, I coped.

I only had a biopsy, no other treatment. The nurse said the doctor wasn’t worried and I’d get my results in a few weeks.

Keep in mind that I’d been told all throughout this that my changes looked moderate/minor, I was hoping for CIN1 but prepared for CIN2.

I got my biopsy result on Saturday just gone and it said CIN. No grade mentioned. I also had a leaflet for the loop treatment AND cold coagulation so I was a little confused as I know I can’t possibly have both.

TODAY: I called the colposcopy clinic and asked to speak to someone. The nurse was (yet again) lovely but dropped the hammer blow. I have CIN3. I’ll definitely be getting the loop treatment. My appointment is in three weeks.

I’m distressed but I’m also angry. I don’t understand how I can go from nothing (after regular on-time smears) to CIN3 in four years. I begged to be seen earlier than July. I called the appointment line about four times and each time got told that there was a waiting list and I shouldn’t worry because my changes are minor.

I know CIN3 isn’t cancer but I still can’t help crying constantly since I had that result confirmed. All my screening has been delayed by the pandemic and I just can’t help wondering if this severe change has been sitting in my body for most of the last four years.

I know HPV can be caught by anyone and any time and can be dormant for several years but I also can’t help thinking: why now? I’ve been with my husband for 12 years and only had a couple of brief relationships before then. I try not to think of it this way but can’t help wondering what I did to deserve this happening to me when everything was messed up by a pandemic.

Appreciate this is a lot of words to read, so thank you anyone who got this far. Needless to say I am scared of the loop procedure and the recovery and “what if they don’t get it all?” But I think I’ve typed enough for tonight. Thank you for listening.

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Firstly, I’m sorry you’re going through this at all - since my own experience of cell changes, I’ve realised that even something “minor” of this nature is hard to deal with and unsettling, so don’t beat yourself up further for being worried and upset.

Secondly, I’m so sorry you had a horrible experience when you called your GP surgery. I know anyone can have an off day, but that’s so unnecessary to take it out on someone you should realise is just scared and anxious. I’m glad you had a better experience in terms of how you were treated at colposcopy.

I feel very fortunate to at least have been dealt with kindly and professionally at every turn. I also panicked when I got the letter that my smear test was abnormal and tried to seek guidance as soon as possible - I was told there weren’t even any phone calls available with a GP for days due to Covid/the backlog and I’m embarrassed to admit I dissolved into tears on the phone because I was so distressed. The receptionist immediately shifted from nice, but business-like to sympathetic and tried to reassure me about how common abnormal smears were and about how I’d have been contacted differently and quicker if it was anything more sinister. She even offered to put me on the list as an emergency because of how distressed I was, but I (reluctantly) said no cos I’d have felt too guilty.

I think you know yourself that the HPV is just one of those things that can and does happen through no fault of yours or anyone else - something that I’d be interested to know out of sheer morbid curiosity I guess is whether incidents of people being HPV positive have increased during the pandemic, given the suggestion that stress is not necessarily the reason, but can be a factor. Regardless, just know you’re not alone in your diagnosis and it isn’t in itself something to worry about - my brilliant (male) consultant had a good way of putting it that I know is right, even if it isn’t always that easy. He said I wasn’t to give the HPV a second thought, that my job was just to keep engaging with the screening programme and let him worry about the rest cos that was his job and he wasn’t ready to retire just yet.

Something else he said that was reassuring - although I always hesitate to say it on a forum like this where some people don’t get good outcomes through no fault of their own - is that if only we could get 100% of engagement with screening, there’s no reason cervical cancer couldn’t be close to eradicated completely.

My own cell changes went from suspected low grade, almost borderline at smear to actually CIN 2 after biopsy at the colposcopy. It seems the biopsy can often result in that just because those deeper changes aren’t so visible or accessible to just a smear - and you’ll hear it more on here given that people with less favourable results or who aren’t dealing with them too well are more likely to seek out this kind of support. It can go the other way, where biopsy shows actually, the level of abnormality is lower or there’s nothing at all.

I don’t think you need to worry too much about the timeliness as the important thing is the changes have been caught now and there’s plenty of time for all kinds of intervention. All my previous smears had been clear and the one that wasn’t I actually had just a month or two early - there was a backlog due to Covid, so when my GP had me in the surgery for blood tests, she went ahead and did it as a precaution.

A nurse at my colposcopy told me about her own experience of a CIN3 result in her 20s, she had the loop treatment and has never had any trouble since.

In terms of the loop, I didn’t have that - I had cold coagulation, but it sounds like the outcomes are fairly similar. Neither process hurts much, it’s just a bit of discomfort and then the healing process of period pain, discharge and some bleeding for a few weeks.

I know it’s so easy to say don’t worry, I’m a worrier too - to an awful level, so from someone who has made herself ill over it all, please be kind to yourself and try to at least cut loose the things that don’t need to take your focus. In your case, I’d say try to put the timing and the HPV out of your mind, focus on the treatment as something positive and look forward to putting this all behind you! x

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Thank you so much for taking the time to reply to me. It’s helped get a few things more straight in my head as it’s always good to get a different perspective, part of why I reached out I guess!

I was really shocked at how the receptionist spoke to me as all the other women I’ve encountered along this journey have been nothing but sympathetic. I’ve had issues with the appointment line in that a couple of times I spoke to men who couldn’t have sounded less interested - but I know that they’re just doing the admin side and it’s not really their fault. It’s just that speaking to them made you feel like you were just a disembodied voice. One did just keep repeating “I’m sorry but the waiting list is 30 weeks, that’s just the way it is” as I increasingly struggled to keep the tears away. I’ve done a lot of crying down the phone at folk. Too much.

I know it’s a hard thing to navigate and feels a bit hmm “off” to say but I do hope that one day this is as close as possible to being gone. I was well into my 20s when the HPV vaccination came in, and while I’m happy to be the age I am - I can’t help feeling jealous about having never had that option.

It’s weird but I’m not so worried about pain with my treatment as I honestly didn’t feel a single thing with the biopsy. I know everyone is different so I never dispute that these things can be painful as even though I also barely notice my smears, I know it isn’t that way for everyone. Anyway, I’m hoping my lack of pain streak continues but it’s not exactly a minor procedure to go through and I can’t help worry that the recovery might hurt. Luckily my manager at work has already told me that if I need time to recover by staying in bed, don’t worry about it.

Thank you again. I will try put HPV out of my mind and just focus on getting to my treatment at the end of the month. It’s been a tough emotional battle. On top of my diagnosis my husband immediately blamed himself and I had to explain that I could’ve caught it from a teenage fumble (and not to be too grim) not necessarily from full intercourse. I suppose I should be glad that he was knowledgeable enough to know it didn’t mean one or both of us had been unfaithful!

I hope that you too are doing well on your journey and won’t need any further treatment down the line x

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I can totally sympathise with how you feel and why you feel angry.
I am the same, never missed a smear but my latest one was delayed by 7 months due to covid. Since I’d always had normal results I was considered low risk in terms of working through the backlog. I was so shocked when I got my letter saying high risk HPV and abnormal changes. My colposcopy was scheduled for 8 weeks but then the appointment got cancelled and rescheduled for a further month. Luckily, I took out health insurance at the end of last year. I’d always had it through my previous jobs so it was on my to do list but covid delays prompted me to make the call.

In order to get a referral though I had to go through my GP and she was very reluctant to give me one. Said it wasn’t necessary and my changes were mild/low grade, could even be hormonal and my NHS appointment was a one stop shop. She also told me I would be wasting my money……which was surely my choice. She ended the call by saying she would get the nurse to call me back as she didn’t feel I understood my results. It was all very patronising although I was relieved to hear my changes were low grade (the letter didn’t specify). Anyway the nurse was much more pleasant, understood my anxiety and wrote me a referral letter.
My colposcopy wasn’t very pleasant, the consultant only took a biopsy but I bled a lot directly after it and I just felt unprepared.
After an anxious two weeks the results came back as CGIN changes which are abnormal cells in the glands. Due to this I was then referred for a hystercoscopy to take an endometrial sample, a larger biopsy and have a LLetz at the same time. The procedure was done last week under a general. It was my first ever general so I was petrified. I got my results today, more CGIN and also an area of high grade CIN 3. Thankfully no cancer though. I’ve got an appointment with my consultant next Tuesday to discuss a hysterectomy since CGIN changes can be a bit more complex.

Today I feel huge relief they didn’t find cancer but at the same time it’s frightening that, like you, just over 3 and a half years ago I had a normal smear. It’s also unbelievable that I’m looking at having a hysterectomy. However, if it’s the safest way of reducing the risk so I’ll be here for my children then I’ll do it in a heartbeat.

Good luck with your Lletz. I wasn’t awake for mine so can’t really comment on pain etc but my recovery has been fine since. I was a bit uncomfortable the next day and I had some light bleeding……a few days ago heavier bleeding started although I think it might be my period. It’s 5 days early but I’ve read it can mess up your cycle.

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Hello Lynnie, thank you so much for taking the time to reply to me and also add so much detail about your own journey.

I’m a bit angry for you as well because I know how it feels to be patronised and told that waiting will be fine, only to then be told that things were “worse” than they said. The patronising upset me almost as much as the worrying about my diagnosis. I’m not stupid, I don’t Google things and believe everything I read but I sometimes want to scream: I CAN actually read. Most of us have enough reading comprehension that a smattering of medical jargon isn’t going to be an issue, we just want reassurance that we’ll be seen. I kept getting told “it takes years for things to develop” but the speed I’ve gone to this…I can understand why some people don’t trust medical professionals and find comfort in alternative explanations and treatments. I’m not like that, but I get why it attracts others.

I know that all this could’ve happened to us anyway if we were seen at the usual intervals and told to come back in 6-12 months (which could’ve resulted in another abnormal smear) but you can’t help wondering about the delays, and how much that added stress to everything. If there is a stress element to a HPV flare up for example, this past year has been a prime candidate!

Fingers crossed that you get the right treatment and your recovery will be problem-free if you do need anything else. I think you’re being quite bravely philosophical in the face of a potential hysterectomy but I completely agree with you as if I were in the same position, I’d go for it if that was considered the best option. Good luck with your consultation on Tuesday, perhaps it might not come to that for now.

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Thank you. I’m actually the biggest worrier on the planet so if we do have to go down the hysterectomy route I know I’ll be terrified. I was even petrified last week getting the Lletz done under a GA. I had a genuine fear I wouldn’t wake up.
The last few months have been incredibly stressful, waiting on results is torturous for me and I know I’ve been much luckier with my waiting times than others. From my understanding of CGIN it’s harder to detect, it can skip layers and I would need monitoring every 3 months. I’m not sure I couple cope with the stress of the check ups. We will see what Tuesday brings. x

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