I don’t think I can wait 3 weeks - how bad is this?

Hi all. I am 31 years old, went for my first cervical screening around a month ago (yes I know, should have gone earlier etc - every time I got a summons for it I had a bereavement and the last thing I wanted is someone messing about with me especially as I have a history of sexual violence). I got the initial result of high risk HPV with low risk dyskaryosis and was invited to colposcopy which I went to today, I wasn’t too concerned as I know generally this is something quite treatable.

The care I received at the colposcopy was excellent but I now have to wait 3 weeks to know the severity of my case. I saw the gyno’s face visibly change when she was assessing me and she admitted there were changes, on my notes it says “Extensive 4 quadrant ACW change, dense Coarse punctations,
I2 negativity”. I know I shouldn’t be googling but none of this looks good. I am a researcher by trade (not in the sciences admittedly) but the wait is killing me (plus I am in excruciating pain from the 5 biopsies taken).

I know you can’t diagnose me, but what were the outcomes for people with similar diagnoses? My family is absolutely ridden with cancers but I’m the first to have any cervical cancer concerns. I’m also suffering a lot mentally as it’s highly likely the HPV was transmitted to me by my abuser but I know I’ll never be able to prove that (not frankly that it matters at this stage). Any info you can help me with would be most gratefully received, thank you just for reading this.

Hi, I’m sorry to hear what you have been through. I dont know if this will help but I’ve been hpv positive for nearly 3 years now, I
had CIN 1 from my first colposcopy. Then I had a smear a year later which showed no changes, then my smear 2 years after that shows high grade dyskaryosis. Yet the colposcopy I had in January after that smear came back clear.

Thank you so much for taking the time to reply to me, I’m really grateful, that is a bit of a relief to hear that it can clear and that results can vary between smears, colpos etc. I’ll just have to wait and see but this is encouraging, thank you.

For anyone interested, I received my results today at 17:30, on a Friday evening and my birthday is tomorrow. I can’t help but feel they’ve sat on someone’s desk until the last minute so I can’t complain they’re late on Monday, so I can now spend my birthday dreading having to have a LLETZ and further investigations as I have CIN1, 2 and 3. On a silver lining they’ve not found cancer (yet) so there’s that thank goodness but the CIN3 is playing on my mind. Deep joy on with the shit.

For some context while my direct medical team have been ok the communication has been nothing short of appalling - I only found out about the colposcopy with a surprise notification in my hospital app (which I had to download as I have zero medical issues before this shower of shit) and then when I started ringing around trying to find out what was going on my gp and hospital both denied all knowledge until I had to push quite hard and finally someone told me I had hpv and low grade changes so it was nothing to worry about (ha ha what a load of crap that was). Then when I was bleeding heavily after my biopsies gyno referred me to gp, who then referred me back to gyno, until eventually I said I was fed up of being ping ponged and gp saw me and gave me antibiotics. I was meant to know my results within 3 weeks “via app, or letter or something” (which means I have been religiously checking my nhs, hospital apps and voicemail compulsively for 3 weeks), then finally I thought I could at least have a nice normal birthday weekend and someone decides to send it out at the last bell just to save their arse. I’m so sick of this

Hi Ilovesquirrels
First of all, happy birthday! I hope you have been able to do something fun even with this all hanging over you.
It’s not good that they’ve left you over the weekend wondering what your results mean and what the next steps are. Sounds like you have been pushed pillar to post with all this!

Am I reading right that the results you have available say you have all three grades of CIN? It does sound like a LLETZ is the next step but hopefully the areas of CIN3 are small and you will have an unremarkable recovery x

1 Like

Hi Cloverradio thank you so much for your reply and your kind wishes. I did manage to have a nice birthday in the end but now I’m not constantly distracted by friends and family I’m back in this awful headspace again. Yes, you’re right, the letter said that I had all three grades but I haven’t been given any indication of the amount of each type - I’m hoping that I’ll get to see the histology report myself (I received that for my smear) which might tell me a bit more about what’s going on in terms of the proportion of each type as the impression I got from the gyno is that she wasn’t enormously happy with me asking questions (for example I asked about whether the vaccine was worth it now and she just sort of mumbled to herself and told me to get in the chair. Very reassuring.) I’m definitely having a LLETZ and as you say hopefully that will be the end of it but it’s very distressing reading on here about people with CIN3 being poked and prodded for years on end and sometimes having to have much more invasive interventions. I bled like a stuck pig for a week after the biopsies so I dread to think what the LLETZ will be like, but if it gets rid of the cells it’s worth it and I’m grateful I’m not going through anything more substantial at this stage.
Thank you so much for reading I really appreciate your kind response.

I get that anxiety is more quiet when you are busy. I am pleased you had a nice time with your family and friends though

It’s not good you didn’t feel like you could ask questions!
My understanding from the reading I have done is that in the majority of cases LLETZ is a one and done for women.

Regarding the vaccine - I think the jury is out on whether the Gardasil vaccine can help clear an existing infection from a vaccine-covered type as that is not what is was designed for, however I did see a study (I can try and find it again if you would like) where women who received it had a slightly higher clearance of HPV than those without it
I think the only negative to having the vaccine is financial?
There is stronger evidence that having the vaccine will prevent reoccurrence of abnormal cells after LLETZ

Again let me know if you want a couple of example studies I have seen. I’m not a scientist but I like reading about things as for me it helps x

1 Like

Thank you so much for your kind reply, I really do appreciate it, I’m feeling a lot better today as things have finally sunk in a bit. I agree with you re the vaccine for the exact reasons you’ve given, my partner and I both chose to have it in the end, but it was frustrating that I had to do that research myself and honestly a bit disappointing that my gyno didn’t appear to actually have an answer (and actually I would have been completely happy with “there is still ongoing research and we’re not completely sure right now” rather than just some mumbling). I really am hoping that the LLETZ is a one and done thing, and I agree that that is true for most cases. I hope I and as many women as possible are lucky. Thank you for being so kind.

1 Like

I’m glad you’re feeling a bit better :heart:
You’re being proactive which is great. It’s a shame the staff member was all mumbly, doesn’t fill you with confidence does it?! Take care x

1 Like