HPV and CIN1 again after LLETZ

Hi,

I feel like I am never going to get rid of this… I am 40, have had HPV and CIN1 come up for 7 years at my cervical tests. Ive had 2 colposcopies
, the second followed by a LLETZ.

I had another smear 6 months after the LLETZ and results have just come back in with HPV and CIN1 again :frowning:

I have a 16 month old, planning fertility treatment next month for a sibling and I am a solo parent - I am really scared of this turning into cancer.

Is there anyone else in a similar position? Ive been invited for a 3rd colposcopy. I assume another LLETZ will be advised. And what if that doesnt work again? Is a hysterectomy the next step? I would do it to avoid the cancer developping.

Thanks xxx

Hi @Sarajane

Usually they can do upto 3 LLETZs depending on how much has been removed before… its very doubtful they would do a hysterectomy for CIN1 changes despite them being persistent, its normally only considered for CIN3 that keeps coming back and as a very last resort when other treatment options fail as its not just about the fertility impact that it has that needs taking into account

When a woman has a hysterectomy with an active HR HPV infection for CIN we are more at risk of developing vaginal cancer, as the surgery doesnt remove the virus and there wouldnt be a cervix for CIN to develop, the changes can instead develop on the vaginal cuff where the cervix used to be, so instead of CIN these abnormalities are known as VAIN which could eventually lead to vaginal cancer… instead of cervical smears you would be upgraded to VAULT smears instead to help prevent it happening in the same way they try to prevent CC

So having a hysterectomy for CIN1 would be abit extreme and isnt going to stop cell changes from developing, its more likely theyd start offering things like cryo, laser etc before thinking of offering you a major surgery to remove minor cell changes xx

Many thanks for your reply!

I should have added that whilst my 2022 smear picked up low grade cells, the colposcopy found CIN2 and CIN3. Hence my worry that this is going to be the case again.

It was very interesting to read about the fact that a hysterectomy can lead to the HPV causing vaginal cancer. I will ask about this at my appointment.

I really hope the colposcopy only picks up low grade… thanks for your insight xx

Hello Tinkerbelle29 I really like reading your answers in this site they are always extremely well written and very useful information thanks.,
I only wanted to mention that I spoke with a gynecologist about a year ago about whatever there’s a higher risk of developing vaginal cancer after hysterectomy, because I had LLETZ for CIN3 and CGIN but I am still HPV positive and really wanted to explore different options.,he said that no that there is no link between hysterectomy and vaginal cancer with women that had hysterectomy because of CIN.
To me it really doesn’t make sense as logic tells me the virus needs to go somewhere if no cervix, but he said it doesn’t work like that . Anyway just wanted to mention it because is something I have tried to get more information in and there is no clear answers as far as I was able to find online but this doctor was sure there is no link.

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Hi @Hop1

Thank you i really appreciate that :slight_smile:

I find that very scary that hes said there isnt a link there, i found a few things that ill post below, there was a study in italy and in sweden on hysterectomies and CIN concluding there is an increased risk aswell as NICE (national institute for health and care excellence) stating people who have had a hysterectomy with CIN present are potentially at risk of developing vaginal intraepithelial neoplasia (VaIN) and invasive vaginal disease

Italys study concluded - “A significant increase in the number of hysterectomies performed for CIN in the last 10 years was recorded. Hysterectomy for CIN can lead to complications, risk of the onset of vaginal lesions, and risk of overtreatment, and remains, in the first instance, an unacceptable treatment, to be proposed only after adequate counseling.”

https://obgyn.onlinelibrary.wiley.com/doi/10.1002/ijgo.14233

Swedens concluded - “Our findings suggest that hysterectomised women with prevalent CIN at surgery should be offered surveillance. Hysterectomised women without the studied risk factors have a more than doubled risk of contracting vaginal cancer compared with non-hysterectomised women in the general population. Still, the incidence rate does not justify screening.”

https://pubmed.ncbi.nlm.nih.gov/31769577/

NICEs management info on hysterectomies with CIN present - “Should people who have had a hysterectomy be offered cervical screening? After a hysterectomy, the secondary care team will decide what follow up is required. The type and frequency of follow up will depend on the reason for the hysterectomy and if cervical intraepithelial neoplasia (CIN) was found in the hysterectomy specimen. People who have had a hysterectomy with CIN present are potentially at risk of developing vaginal intraepithelial neoplasia (VaIN) and invasive vaginal disease”

https://cks.nice.org.uk/topics/cervical-screening/management/cervical-screening/ - scroll down near the bottom
Xx

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Thanks for all this information it actually makes sense if the virus is there it will go for what is left don’t need to be a doctor to understand that, no idea why that gynecologist said no link, I will ask my own gynecologist when I see her she is fantastic and will probably give me a better answer than this other one. I am still HPV positive after Lletz no abnormalities but is a worry that is not gone yet my gynecologist said to just keep going for appointments and not to overthink as some women can stay positive after Lletz for many years without problem’s but is always in the back of my head :see_no_evil:

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