CIN 3/persistent HPV…hysterectomy?

[NeverHadHaveHas]

After being HPV positive for the last 4 years, I’ve just had a smear and then Lletz procedure after my last smear in November found CIN3 changes. I had a clear colposcopy in 2022 so the severe changes threw me for a loop.

The consultant rang me today to tell me that the results of the Lletz has shown unclear margins, so has offered another Lletz or a hysterectomy. I’m 44, have had my children and have no intention of having anymore so I chose the hysterectomy.

I suffer with health anxiety anyway so I am really, really struggling with is all and am finding it hard to function. I’m terrified of the general anaesthetic but am also terrified of not having it done and the potential for a further Lletz not catching everything and it developing into cervical cancer.

Has anyone been in a similar situation who could offer some words of wisdom or reassurance?

I'm not sure about words of wisdom, but I had the hysterectomy about 10 years ago. Total Abdominal including cervix, of course.

No regrets. I was mid 30's and had 3 children already, tubes tied as family complete.

First time was shortly after vaginal birth of first child. I had Lletz after Colposcopy showed CIN3. Then the second time a Colposcopy removed all bad cells 6 weeks after birth of third child (smear taken during early pregnancy but treatment delayed). With the third bad smear, 2 or 3 years later, I asked for the hysterectomy.

The recovery is brutal, much worse than my c-sections, but it was so worth it to not have the fear of cervical cancer hanging over me, especially with very young children.

No more smears or periods were also a welcome bonus!

I think you've made the right decision. Hope all goes well.

Can’t advise on the surgery part but just wanted to say that I was on annual smears for about a decade with HPV+ / CIN3 / colposcopies / LLETZ all in the mix.

Finally after that period of time, my last smear was clear. So, if you don’t want hysterectomy, there is still hope that it will clear itself up eventually. The uncertainty and annual smears / colposcopies are a lot though.

Thanks so much for your reply. Was your HPV high risk can I ask, and still cleared after all that time?

The uncertainty and anxiety of having regular colposcopies/smears is one of the things that’s pushing me toward surgery as my mental health is really taking a battering as I’m so terrified of developing cancer. How did you deal with that if you don’t mind me asking?

It's major surgery with long lasting effects on your hormones. LLETZ is a breeze in comparison.

@Twasasurprisethanks so much for your response. That’s so helpful. Did you have it done by key hole surgery? He said I would be in and out on the same day.

Can I ask whether you had anxiety afterwards that there was spread into the vagina? The consultant has mentioned I’ll need a folllow up smear 6 months after the surgery and in very rare cases the abnormal cells can spread into the vaginal wall.

This is why I’m debating whether to change my mind and ask for one more LLETZ to see if they can get clear margins, but then I still have the persistent HPV 😖

Mine was 10 years ago and keyhole wasn't an option, at least with my surgeon. It was abdominal only, which was 3 days in hospital minimum. If yours is keyhole, your recovery should be so much easier!

At my post surgery check, the consultant said that histology had confirmed everything necessary was removed, so no need for smears. I think the term for it was "vault smears".

Things change, 20 years ago HPV wasn't part of the testing. It was smears recommended for everyone eligible at least every 3 years, but I was annual after the first abnormal result.

If you do go ahead with the hysterectomy, there shouldn't be hormonal changes as indicated by a PP, unless you have ovaries removed. I still have mine, and don't seem to be menopausal yet, 10 years on in my mid-late 40's.

Thinking back, I have an autoimmune disease and was on immune suppressants, so this may have factored into why I couldn't clear the HPV. I'm not sure testing for it was part of the equation for my treatment though.

Lletz is usually a relatively simple recovery from memory, so if you aren't sure, probably best to err on the side of caution and choose this again.

I was in exactly the same position and eventually had a hysterectomy. The medics would have liked me to have it earlier but I really didn’t want one. It was fine. I had keyhole but the recovery was hard. I kept my ovaries so didn’t go into menopause immediately. A benefit was never having periods again as they’d been horrific for several years due to other issues.

How have you found life after the hysterectomy @Mammut? Any side effects or have you just felt the benefits. They will be leaving my ovaries so hopefully no massive hormone fluctuations. Did you only have the one Lletz beforehand? Sorry for 20 questions 😅

My friend had a full hysterectomy 5 months ago and recovery was steady and she is now back to normal (took between 3&4 months to get back to full fitness but was in fairly good spirits after 6 weeks) it’s major surgery but a lot less recovery than if hpv progressed to cancer!

Thanks @gogomomo2that’s a very good point. Did your friend have CIN3?

I has several lletz, and another more invasive thing (can’t remember the name). It’s all been fine since. No big side effects other than the general recovery, and minimal scarring. My belly button is a bit weird though as they use that to go in and out. It’s not the same as before but only really noticeable to me.
The recovery was difficult though, took months to get back to normal.

A hysterectomy seems like a really drastic option with a long recovery time.

My first LLETZ for CIN3 did not catch the margins, the second one removed everything bad and my follow up smear 6 months later was clear, They told me I had 3 of the most risky forms of HPV and I was clear of it at the follow up smear (after having it for years) so I just need a 3 yearly smear.

I do understand the anxiety about it coming back but personally I woud have the 2nd LLETZ and go from there.

Thank you this is really food for thought. I have been sat here thinking that I agreed to the hysterectomy off the back of a three minute conversation with no real thought to what came next because I was so shocked and panicking.

I’m lucky that I have private medical cover through my job so I’m thinking of asking for an appointment with a private gynaecologist just for a longer chat to really understand the pros and cons.

Did you make any lifestyle changes to try to get rid of the HPV or did it go by itself? I’ve sort of resigned myself for having high risk HPV forever as I’ve had it for 4 years at least.

You can clear it . 4 years is nothing really. I tested positive in 2020 and didn’t get a clear until this year. Had lletz in 2010 too so I know it’s likely to pop up again so I understand your worry about it .

@TheThingOnTheIcethat’s great to know you’ve cleared it!

For those who have had CIN3, were you fairly calm? I feel really stupid for finding this so frightening he

I'd just had my first baby when I was diagnosed with CIN3 at age 25.

I was told at the time that it would be years before it progressed to cancer. Lletz was a proportional response, especially as it was my first abnormal smear result.

I don't think you need to panic. Take your reasonable time to decide how to proceed.

I didn't do anything to clear my HPV, I assumed it was the LLETZ that cleared it.

No, I wasn't calm when I discovered I had CIN 3 and I panicked and catastrophised a lot, I think that's totally normal.

I am also scared it will come back at some point..