Nervously awaiting lletz

I’ve read this forum for some time now, trying to wrap my head around everything.

I’m 22 (as of today) and I know it’s young for these issues- though my situation feels a bit different to others. My mother was diagnosed with invasive cervical cancer (Due to DES, not HPV) because she was pregnant with me - they found it at her first checkup. Because she didn’t want to abort me, she waited to have me (early) and then treated immediately. The cancer had spread to her uterus, where I was cooking away, and her lymph nodes. This was a hard battle and she survived, and now lives with severe lymphodema in her leg and abdomen.

So I went for my first pap a few months ago. It came back abnormal, and I was recommended for a colp. My GP said don’t worry, it’s likely to be nothing. At the colp, they mentioned a trial (after research it turns out that women under 25 with CIN2, they wait and see). They did two punch biopsies and insisted that it was all fine and normal and ‘unremarkable’ in appearance, and that it would come back with nothing. I was never asking for assurance through this whole process, which only concerned me more.

So weeks later, I have an appointment to come in and talk about this trial, which I knew already because of my mother’s history that I would opt for treatment. The day of, after taking time off of work, I end up getting a call from a doctor telling me that I didn’t need to come in - though I was already in the parking lot on my way in. So we go in and he says that the appointment was for the trial, which I wasn’t suitable for. I expect for him to say it’s not CIN2, it’s CIN1, but it turns out to be CIN3. He says they are still needing to discuss it, as the pathologists can’t agree on my results, so it is being taken to a board (on the 15th). After insisting that I don’t wait needlessly, I’m booked in for a LLETZ on the 17th…

This whole process has been really long and taxing already. So far, the care I’ve received has been awful. I’ve had the receptionist call me ‘accidentally’ and hang up while awaiting results from my biopsies, offered placement in a trial, asked for a follow up and then told I didn’t need to come in… It’s been difficult to say the least. My mother had CC when she was just 26, while I was in the womb. They refuse to even take this into consideration, and instead keep telling me it’s nothing to be concerned about and I’m too young to have any issues.

Sorry for the lengthy post, I suppose I’m just looking to vent to people who may be able to relate.

Hey KPW,

Wow, seems like a pretty frustrating experience!

I'm pleased you have a Lletz booked in though, I also have CIN3 and high risk HPV and was booked in for treatment 5 days after I got my results so it seems they are pretty keen to treat CIN3.

I just wanted to reassure you about the procedure, let you know that it is absolutely fine, I know I was worried and panicked so much. But you honestly cannot feel a thing!

However, I do think it's pretty incompetent of the doctors to fail to notify you initially that your appointment had been cancelled! I'd definitely mention that to your GP!

I hope all goes well with the LLETZ, I'm awaiting my results from that to confirm whether the CIN3 has gone!

Please feel free to contact me if you'd like to chat about anything :)


Good luck!!! Xx

Hi Ssylvester,

Thanks so much for your reply. They weren't keen to book me in for anything until after the board of pathologists had discussed it because they couldn't decide on a clear diognosis, but the doctor I saw was pretty adament that it's CIN 3. The only reason they booked me in so soon is because I told him I was done waiting around. 

It just seems pretty strange that they keep telling me I'm absolutely fine needlessly before I was concerned. I didn't say - at the original colpo they turned the screen away when the head of oncology came in, which I thought was weird, followed by them telling me over and over that I have an 'unremarkable cervix'. 

I know I'm over-worrying, but I can't help it after what my mum went through when she was pregnant with me. 

I'm not worried about the procedure - just with them brushing me off because I'm young. 

I forgot to also say - at the appointment with him discussing my results, and that I'm not eligable to be in the trial, he was very reluctant to tell me my results at all. They likely would have made me wait until after the big meeting on the 15th. It's all pretty freaky and there's been a severe lack of info + passifying my mother (who was a nurse for a long time + went through it all) and myself.