LLETZ procedure for CIN I (and 4 years of HR HPV)

Hi all!

I have found this forum really reassuring (Thank you!) and thought I’d share here what’s in my mind :slight_smile:

I have been testing positive for High risk HPV (NHS never specified strains) for 4 years (that I know of) and last year I had my first colposcopy but the nurse decided not to do biopsy as he didn’t think the cells had changed enough (only a tiny white spot). This year’s colposcopy showed a considerable growth in abnormal cells so got a multiple punch biopsy that came back CIN I positive.

I was then offered to wait 12 months to have a new check and see if cells have developed or refrained, or a LLETZ procedure considering the many years testing positive of HR HPV.

The nurse and leaflet given presented LLETZ procedure as something fairly normal to go through and I was advised I’ll be able to have a normal life just with some bleeding. Hence, I opted for LLETZ procedure.

I have since then gathered plenty of information regarding CIN I cells and the procedure (maybe too much to the point that many horror stories have come up!) and I have understood that every body is a different world and what happens to one might not happen to others but certain challenges seem to be common to all and there are some risks not shared by the NHS professionals.

Following all that information I have fluctuated many times between waiting for 12 months or doing LLETZ. My manager is on holiday when my appointment is due (19th September) and I won’t be able to take time off.

I know that this is a decision only I can make but I feel there isn’t a right one here. Do I wait and risk it getting worse? Do I do LLETZ now with everything that comes with it?

Thanks in advance for reading all this, hope it makes any sort of sense! I would appreciate any thought you might have around it :slight_smile:

I’ve had HR HPV and CIN1 since at least 2020, and I’m not going to get any treatment unless it gets worse. I’d consider cryotherapy before a LLETZ, however. This means a constant cycle of colposcopies and Pap smears, but I’m okay with that vs having surgery. The likelihood of CIN1 progressing is low, but even so, we’re likely to catch it before it gets to that point because I go in every 6-12 months.

@Juli that’s such a hard one to answer. I have CIN1 (yearly smears currently) & know how I feel just watching & waiting, almost like a ticking time bomb - it’s hard knowing you have pre-cancer that isn’t being treated, on one hand I wish they’d just take it away but on the other I’d be really anxious about having LLETZ done. Only you can decide what you want to do & whatever you decide will be right thing to do. Is there any way of opting for another date so you’re not under pressure to go into work after the procedure in case you’re not feeling up to it?

Thank you @anxiety123 and @Lou_44 for your replies to my post <3 I know it took me a minute to get back in touch but I did read them as soon as you posted them and they were much appreciated. There is something about sharing experiences with those going through the same/similar situations. We got this! :raised_hands:

So in the end in my dwelling I decided to get a second professional opinion and booked an online consultation this morning with a gynaecologist from Spain (I’m Spanish) who is specialised in cervical cancer.

She explained that in more cases than not, CIN I aren’t treated but just monitored (as you ladies are doing :slight_smile: ) unless after consecutive years of CIN I, the patient struggles with anxiety due to the uncertainty or if any other major causes are involved. How (as we have been told already) CIN I cells disappear in 90% of cases whether they take months or years to do so.

She also explained, however, that LLETZ is indeed a very common procedure and chances of complications (specially when treating a smaller area for CIN I) are very low. The problem is that going through LLETZ now doesn’t erase the cause of the issue (HPV) so if in one or two years time the CIN I cells are back, it would feel even more devastating.

She suggested to be patient but that nothing wrong with getting LLETZ done, just being conscious of the above if (like me) the wait/uncertainty is the main cause of action right now.

On the other hand, whichever the decision, she mentioned some treatments that can be used in the meantime to boost the immune system. She made it clear that they are still being studied around the full efficacy of it - as she said “If it was the panacea we would not be where we are, but they will do no harm either if you can afford them”. They are, indeed, quite pricey as they are long treatments.

You might already know of it but I thought I’d share it as I hadn’t heard or read about this until today. The products suggested by the gynaecologist are:

  • ** Oral (either one or the other):**
  • Papilocare inmunocaps: 1 capsule a day for 3-6 months.
  • Huvapir, 1 sachet a day for 3 months.
  • Vaginal care (either one or the other):
  • Papilocare Vaginal Gel: First month every day for 21 days and 7 resting (ideally same as period) then 5 months treatment: 21 days (one on one off) and 7 rest.
  • Colpofix spray: 5 sprays a day for 10 days a month - during 3 months.

I have found many case studies around Papilocare treatments used in different stages (treating HPV before cell changes, before/instead of LLETZ, after LLETZ for faster healing, even helping cases of CIN 2/3) and the comparison with patients that did not use it. Indeed there are many successful cases were the benefits were seen - some more than others of course.

I have yet to do research on the other products but so far found Papilocare here https://livbio.co.uk/shop/ sold in the UK.

I think after all I will be building my patience and cancelling my LLETZ - Will join you ladies and I’ll give my body at least a chance (and maybe some support if I can afford the treatments) to get better and fight this! :slight_smile:

I just want to make it clear tho that there might be other/cheaper products that help boost the immune system just as much as these do hahaha but since they were suggested by a professional that at the end of the day gets nothing out of us buying them, I thought I’d share them here :slight_smile:

If you have made it to the end of this extremely long message, THANK YOUUU!!!