I’ve found myself on this roundabout none of us want to be on, just need to talk about what’s happening and also looking for experiences from others who have been through this.
The lead up to all this is had hpv+ smear with no cell changes in 2021 and 2022, then earlier this year had another smear this time with cell changes so got referred to colposcopy.
Had my colposcopy and punch biopsy a month ago, not pleasant but tolerated it ok. The doc doing the colposcopy said she saw maybe some mild/moderate changes but wanted to wait for biopsy results before doing any treatment.
Due to an admin mess up at the hospital I’ve still not had my colposcopy/biopsy results, but was told 2 days ago i had an appointment booked for LLETZ, which i had today.
At the appointment the doc said the changes are CGIN, this is the bit that’s scaring me as there isn’t much information about this and everything I have read suggests it’s more severe than CIN, and usually requires multiple LLETZ or even more extensive treatment.
I also found the LLETZ difficult. I’d expected it not to be painful but i’m sorry to say it was, when she started doing the actual cell removal it felt like a very sharp stabbing pain and my body kind of went into shock, I couldn’t breathe, was suddenly in floods of tears when I was happily chatting before etc. I still feel awful and without wanting to be dramatic, feel quite traumatised. I really don’t want to go through that again.
The thing that really worries me is I have no children yet and we were hoping to start TTC next year, I have no idea if this will even be possible now.
No idea what happens next other than waiting for LLETZ results (whatever that means?) Then they mentioned test of cure in 6 months and again in 12 months.
Can anyone relate to any of this, or has any positive experiences from out the other side of all this? Thank you so much if you made it to the end of this post, I feel really lost right now so it’s appreciated.
Hi @Fern my emathy goes out to you dear sister. I had my smear results yesterday and the dr said I have HPV plus abnormal cell count. I wll have a Copolscopy next week and really anxious. When something like this affects you, your worlld is turned upside down i know mine is. I am stilll crying . I cant give any info about Copolscopy but I can offer my warmth online… I allso dont have
children . The mind is poweful. Try to do some meditation and stay calm. Good to have a friend or family member who can support you too. I hope someone replies here to alleviate our fears.
Thanks for your reply @Heart , much empathy to you too. Sorry to hear you’ve had abnormal cell results too but fingers crossed all goes well at your colposcopy. All the clinical staff that carry out these procedures are lovely and will take really good care of you.
You’re right, it’s a very emotional process with all the uncertainty isn’t it and really throws a spanner in the works with everything. Meditation is a great idea too - deep mindfulness breathing got me through the worst today.
Aww that is great @Fern regarding mindfulness . I am still processing my diagnosis . Actually i dont live in UK i live in Fiji where the medical system is not reliable but fingers crossed, all will be ok for me . I have been reading so much online about HPV and cervical cancer. I didnt know theyre many types of hpv and not all cause cancer. My current worry is also that hpv is an sti so ive been reflecting on that plus of course what Id do if i need surgery. Im exploring holistic/herbal treatment. I now wished id had the hpv vaccine but it was not around when I was at school.
Hi ladies
So I had a smear last June that showed borderline cell changes during a smear so I was sent for a colcoscopy at the hospital where they found cgin. I had a lletz treatment and then had to wait a long time for the results as they had to take this to an MDT meeting which is a meeting with all the professionals involved. The results came back that the lletz had successfully removed all of the precancerous Cells and I have just had a follow up smear at the hospital at the end of march and am now awaiting the results from this. The results you are waiting for will be an analysis of what they have found during the colposcopy and if the lletz treatment successfully removed all of the cells. The waiting is awful and I am now back into the anxious state of mind since having my latest smear but I have just learnt to try not to think about it in between waiting for results and just ride the wave of is coming next,last year I was sooo scared but I am learning to find ways to deal with it all. I’ll keep you updated with my results xx
My year at school were one of the last ones that didn’t get the HPV vaccine and we weren’t able to get it after, I wish we had as things would have been different now.
Hi @sunshine24 that’s great news your LLETZ managed to get all of it. Fingers crossed all clear on your test of cure smear. The waiting is teally difficult isn’t it!
Hi @Fern, I found out last year that I was hpv positive and also had a LLETZ procedure for CGIN. Like the majority of patients who undergo LLETZ (over 90%) all of the cells were successfully removed. 6 months later I had a test of cure - which is simply a smear test - back at the colposcopy clinic and the results came back as hpv negative and no abnormal cells. I go back for a further smear in one years time. This is the results most people get, and hopefully you will too! Like sunshine said, it can be really slow to get initial results back because they are discussed before the Multi disciplinary team. From what I remember, this meeting usually only occurs once a month. So this will delay results further. The one good thing about Cgin is that we are monitored very closely due to the nature of the cell growth. A lot of ladies look into taking supplements to help their immune systems. I didn’t go down this route, however I do eat fairly healthily and exercise. I don’t smoke, which is a big factor too in terms of immunity. Let us know how you get on x
Hi @Andi thanks so much for sharing your experiences, really pleased the treatment worked for you. It’s a scary time but that’s all reassuring.
One thing they did say to me is that GCIN changes can be missed on routine smears and even by colposcopy/biopsy which is scary but like you said, at least they monitor us closely now it’s been picked up.
I had a very similar experience, I was HPV positive for 3 years, no cell changes and then found to have CGIN (after quite a long diagnosis process… not concerning cells on dye changes or in punch biopsy but confirmed in LLETZ as they were concerned the punch biopsy didn’t match my smear). After my first LLETZ they were not 100% confident of clear margins so I had a 2nd LLETZ, thankfully no more CGIN cells. I recently had my test of cure and am very pleased to share I am now HPV Negative!
Whilst I am fortunate to have a 15 month son, I was very inquisitive to understand how this and treatment might affect my plans to have a second child. Thankfully, my nurse is super encouraged that it should not be a concern, I will be naturally more monitored in regards to the length of my cervix but even if this was shorter there are things they can do to support it. I have a close friend who has successfully had two children after having 2 LLETZ (something I only found out after discussing my experience and wish I had known sooner)
I know this time in the process is so worrying and you can’t help but think and worry about the things that might or might not be but I hope this positive story adds some reassurance. It is great that they found the cells when they did and wishing you a good recovery. Xx
Thanks so much @Tbcuz for taking the time to share your experiences and for the kind words, it is very reassuring to hear you and your friend had positive outcomes following treatment.
Do you mind me asking if the second LLETZ treatment you had was done in a similar way to the first one? I’m really hoping mine was an anomaly with how uncomfortable it was.
I would say that it shouldn’t have felt painful, more uncomfortable, perhaps the anaesthetic hadn’t fully kicked in. Not scraping, but some tension. I think it does depend on how anxious you are, the 2nd time I was a lot more tense and they had to keep reminding me to relax. Hopefully you won’t require a 2nd LLETZ, it is quite common to not, but just know if you do find yourself in that situation that there is a community here that have too and have come out the other side. IF you end up needing a 2nd, I really recommend calling and speaking to your colposcopy nurse which should be detailed on your letter, I found this super helpful and you could discuss the experience you felt to try and understand why xx
Also, everyone’s experience is different, and I think the high emotion of the experience is really natural. I have read accounts on here who have had a similar experience and requested to have the 2nd under general. But hopefully you won’t need a 2nd xx
Definitely, I don’t want to put anyone off with my experience either, as unpleasent as it was I’d still have the treatment again if I needed to.
My partner suggested I maybe call the clinic and ask for a debrief since I’m struggling with it quite a lot, I’ve been tearful and wobbly since. Think I’m going to after the bank hol weekend and hopefully that will help move forward too.
Very pleased this forum exists! I’ll definitely update everyone when my results come back x
Pleased it sounds like you have a good support network, and an extended one now through this forum. Take it easy over the Bank Holiday and try to speak to your team when you are ready to talk about your experience. Keep us updated, take care xx
Well done getting through all the tests and treatment! Its a horrible experience i found LLetz very traumatic and also felt/stoped them to ask for more numbing and i went very dizzy!
I have a positive CGIN story
I was HPV+ for 3 year and then got high grade CGIN and CIN3 and had 1 Lletz treatment. I was originally told i may need another due to unclear margins but when they do the Lletz it also burns cells left in cervix and cures them. I was disscussed in monthly meeting (all CGIN cases are) and they decided to not do a 2nd Lletz as i would like another child. I waited for my TOC and got the all clear from cell changes and the HPV! I didnt take any vitamins or do any special diets so very happy with my results! I have another TOC this year so fingers crossed is the same again! I must say the whole experience was though but im so grateful for the tests and treatment.
I would advise keeping reading on here and i found the GOV website about CGIN the best place to find more info on that. And there where some postive storys on here also about women given birth and haveing successful pregnancies after LLetz!
Thanks for such a kind and reassuring post, really pleased that the treatment worked for you.
It is tough with it being such a long process of tests and waiting for results isn’t it, but grateful we are able to have this screening and care.
Do you mind me asking if they gave you any advice about TTC after your TOC - was it kind of up to you or are you not ‘allowed’ (wrong word but you know what i mean) until after both your TOCs?
Thanks @Linf that’s really helpful to know. I’m mid 30s so the thought of having to wait another 18 months to even start ttc worries me a bit but can totally understand why they’d say 6 months
