Persistent HPV/CIN2/LLETZ

I have had HPV for 3 years now (that I know of). I was positive on my first smear aged 25 but I’ve had the same sexual partner for going on 8 years so I’ve definitely had it for longer.
Every smear was negative for abnormal cells but I have a nasty cervical ectropion (pain during sex, watery discharge, pain/bleeding during smear test and cramping) so I was referred for a Colposcopy. They saw a “halo region” of white cells and said it was a CIN1 and not to worry and it would go away. It was a few years later before going back for another follow up (Cheers Covid 19) and those cells had grown, so she did a punch biopsy, still convinced they were only CIN1… The results have come back as CIN2 and still HPV positive, I hate you HPV!!

I have been booked in for a LLETZ in a few weeks and I’m freaking out, not just about the LLETZ but the future long term, the fertility/cervical cancer struggles ahead. I wish I was just one of those fortunate few who have a normal cervix. I feel like my body is betraying me.

I haven’t had children yet and me and my husband were literally just about to start trying but chose to wait and see if it was safe. I’m so scared that this will impact my fertility (not so much the LLETZ) but if the cells keep growing back or if they find out its actually CC not CIN2 during the LLETZ… Will I need a hysterectomy?!? What if they remove these cells but there are nasty one’s higher up and in the fight for having children, I end up losing my life.

I am so desperate for children but also staying alive. The pain of accepting that I won’t be able to have children would break me and my partner. We’ve been together almost 8 years, just recently married and talk about having babies all the time.

Having HPV for 3 years+ now makes me think that it will never go. I will keep getting persistent cell changes and HPV positive results until I lose my ability to have children, or worse, it’s actually CC.
Another worry is that what if I have the LLETZ procedure and it cuts into a tumour, it vould cause potential CC to spread.

I’m absolutely terrified and I can’t seem to focus on anything positive.

Please help.

Everytime I talk to my mum she just says I need a hysterectomy and to not focus on children and save myself. I’m not even sure my husband would give up his chance of not having children by staying with me…

Hi Emma,
How are you feeling?
I know it’s hard, but please try and stay positive.
I’ve recently had a biopsy and awaiting results after testing positive for HPV twice and this year also having moderate cell changes, so I don’t know yet what my results will be.
Sending you positive thoughts. X

1 Like

Hi @Emma2

Thinking about hysterectomies at this stage is very premature hun its only considered as a very last resort, LLETZ procedures are successful 90% of the time and its very likely by the time you have your test of cure you could have cleared the HPV from your system, i had a LLETZ for CIN3 possible invasion and i came back negative for the virus at my test of cure last month so its very possible you will have the same… if there was anything hiding further up it would have showed on the punch biopsy in the form of CGIN as the cells further up have a different name when theyre abnormal so it does seem very unlikely they would find anything up there… punch biopsies are rarely wrong but IF and thats a very big if lol early stage CC on a LLETZ is found the LLETZ has removed it without the need for further treatment

Let them know your wants and needs when it comes to children they are very big on preserving your fertility as much as they can but this result shouldnt stop you from following your dream and trying to have a baby or put your life on hold, its perfectly safe for you to start trying once the LLETZ has confirmed the cells were removed successfully there isnt anything that says you shouldnt get pregnant or we would all be advised not to have sex at all just incase that happened

Try not to get ahead of yourself you have statistics on your side and the worst case scenarios are very unlikely to come true we are our own worst enemy when it comes to these things but there really isnt anything thats pointing towards them finding anything more than CIN or that you should put your life on hold, if we did the world wouldnt be very populated lol

I hope everything goes well with your appointment and good luck with your journey :slight_smile: xx

4 Likes

Hi Charlene,
Was it punch biopsy or LLETZ/cone?
Sorry to hear you’re going through it as well.
I’m freaking out but more internally, I haven’t even cried. I just feel totally out of control right now, like I’m in a speeding car with no brakes.

Thanks for your positive thoughts. Back to you! I hope yours goes ok as well :slight_smile:

Hi Tinkerbelle29,
Thank you for your message, I have re read it a few times and it’s so reassuring to hear someone recovering from this and I’m glad that you’re now negative. I am thinking of all the worst case scenarios and it’s keeping me awake most nights.
On a side note, I am very scared that I have CC, it feels totally possible. I have suffered watery dischage for years, sometimes more odour then normal. I did mention this to my gynaecologist over 3 years ago and she said that it was a cervical ectropion… but after googling, it’s one of the key symptoms of cervical cancer.
I’m scared that deep down I know they will find it in the LLETZ.

I’ve always had normal smears just HPV positive but why didn’t they show the CIN2 then, only the colposcopy showed the cell changes and she put a blue dye on them 3 years ago and said there was no cancer there then. So hopefully if there is cancer there it’s still relatively early?

I really really hope that I’m wrong… She was confident it was only CIN1 before the biopsy so she could be wrong again.

I honestly don’t know how I would cope. I don’t think I could.

My cousin died of cervical cancer.

Hi @Emma2 it was punch biopsy that I had, so the same as you. Did it take long for your results to come back? Before I went for the colposcopy I read that the cells normally get removed at the same time so I keep asking myself why they did a biopsy and didn’t remove them at the same time?! Although the consultant did say because he wants to remove them under GA.

I’m so sorry to hear you’re feeling like that, I’m just trying to distract myself and keep myself busy or I’ll end up going crazy!

Take care. x

Its natural to panic and let your mind run away with itself especially when you have all these symptoms but there are many conditions including an ectropion that match CC symptoms to a T and more often than not they do turn out to be unrelated, google really doesnt help it will cause you more worry than whats necassary

After my first abnormal smear in 2020 HPV with borderline change with the help of Dr Google i convinced myself i must have atleast stage 3… long story short i felt lymph nodes in my groin, advised to have a smear when i could (pandemic), booked for ultrasound to check the lumps, abnormal smear results = colposcopy, colposcopy showed a huge white area i noticed under her mask she pulled a confused face and she took punch biopsies so had to wait for results, couple days later ultrasound confirmed they were lymph nodes but they looked normal didnt fully believe it with what i saw on the colposcopy screen but the biopsy came back CIN1 and an ectropion follow up in 12 months, in this 12 month i started bleeding very heavily/irregular i couldnt move without leaking and when i wasnt bleeding i had bloody discharge/spotting GP insisted everything was down to the ectropion but like you with everything i just couldnt shake this feeling something was wrong so when the follow up came around and another colposcopy punch biopsy upgraded the cells to CIN3 and they were looking for an invasion to me that confirmed everything i was thinking, but when i had my LLETZ it just confirmed it was precancerous changes only with nothing abnormal hiding further up… it is very possible to have the exact same symptoms as CC without actually having CC, this cancer grows slowly and precancerous changes generally take years to progress into anything invasive and the symptoms youve descibed when they are due to CC it presents when its advanced i.e a tumour rather than lesions big enough to cause symptoms and having the all clear not long ago if cancer was found it wouldnt be advanced enough to cause those symptoms and it would be seen with the naked eye without the need for the solution they put on

Smears arnt really used as a diagnostic theyre more of a guideline to indicate whether further investigation is needed as only a few cells are scraped off where a punch biopsy is the size of a grain of rice so theres more to work with, sometimes they can be misreported, there can be an error or the ‘spatula’ missed the area effected so incase this happens even if no abnormailities are found on any smear after the 3rd HPV positive were sent to colposcopy regardless but unless they look back at previous smears there isnt a way to tell why it wasnt picked up then but i really dont think they will find anything other than what the punch biopsy says xx

Hi @Charlene35

there isnt a normal thing to do when it comes to removing abnormal cells, some do like to do the ‘see and treat’ method where as some want to be sure and take a punch biopsy first, abnormal cells can look alot worse than what they are e.g looks like CIN3 so they do a LLETZ but the LLETZ only showed CIN1 therefore making the treatment unnessacary and they have over treated, it just seems to depend on the person doing the colposcopy or how urgent the smear indicates a treatment is

Fingers crossed you get your results back soon, it can depend on your area for how long it takes both times i had my punch biopsies i had the results back within 2 weeks xx

Thank you @Tinkerbelle29 you’ve made me feel a lot better. X