I feel like I’ve been anonymously scrolling through your stories for months and it’s about time I introduced myself.
Here’s my bio:
36 years old
Single
No children
Here is my journey so far:
HPV since approximately 2019 resulting in yearly smears.
2022 I was called for a colposcopy due to 3 abnormal HPV smears and was cleared to go on the understanding that I would go for another smear in 2023 and was likely to go back to 3 yearly ones after. (If only!)
-2023 smear let to a colposcopy.
October 2023 I was advised to have a colposcopy and lletz but they couldn’t do the Lletz that day because I was doing a sponsored abseil the day after .
December 15th 2023 - Lletz day. Results came back on the 3rd of Jan (who needs to be anxiety free over Christmas anyway ) - High grade CIN3 & high grade CGIN. Recommended second Lletz for 8 weeks post initial Lletz.
-5th Feb 24 2nd Lletz procedure.
Phew, now that’s cleared up. Help! I’m an exhausted anxious mess. I go from ‘OMG it’s going to be cancer’ to ‘You had a perfect blood test last August, it’s going to be clear’ in a matter of seconds. All of the stories I’ve read about people with CGIN being offered hysterectomies are just reeling around my mind. I appreciate that I’m getting a little on the older side for hoping to meet mr right and start a family but I feel like that possibility is being ripped from me. I feel like my life is on hold while I await my results and am constantly refreshing my NHS app throughout each and every day.
I’m very much alone in this and this forum has been my absolute rock in the challenging times. My best friend is really supportive but as many of you have mentioned, it’s difficult to relate when you’ve not been through it. My parents…let’s not go there! Due to a disagreement the day of my December appointment, they’ve chosen to pretend that never happened. I reminded them a week later and they just said they knew nothing about it, still didn’t ask how it went. Furious doesn’t begin to explain how I feel right now!
So that’s me in a nutshell. Any advice to overcome the exhaustion (physical and emotional) and any stories (good or bad) on 2nd LLETZ with similar results to mine would be very much appreciated.
Well this shows how long it took me to brave writing in the forum . Today I received my biopsy results and in typical me form, it’s been a rollercoaster. So here goes, the letter says:
I am writing with the results of the recent repeated LLETZ treatment on your cervix which came back as showing mainly koiloctosis, which means viral changes and low grade changes
mainly CIN 1 completely excised.
We will now see you back in 6 months time and 18 months time for a test of cure. This will
involve a smear test and a colposcopy assessment of your cervix.
In the meantime we will review your case at the monthly multidisciplinary meeting. This should
not alter the plan of management. If it does I will write to you in March and let you know.
So, I was delighted upon reading CIN1 after my last one showed high grade CIN3 & CGIN and immediately felt a release of anxiety. Then gradually, throughout the day, I’ve read the letter multiple times and now I’m focusing on one key phrase, ‘as showing mainly koiloctosis’. I can’t help but feel like the mainly part is because there were small areas of CGIN or CIN3 still and that the panel review are going to come back with a different response.
Is it normal to feel this way? I’m an over thinker and suffer with my anxiety so I totally appreciate that I might be over reacting.
Also, where the F has the CIN1 come from? I only had CIN3 and CGIN in the last sample. Is it normal to be worried that we’ve only biopsied two areas and they’ve come back different?
Anyway, I’m going to release you from my head of crazy over thinking.
Hello, just wanted to say that yes is normal to feel this way, I have been dealing with Lletz many many Colposcopys for the past 3 years and now heading for my 2 Lletz in April. It seems like the never ending story. What makes me feel better is thinking that I am doing all if this to avoid cancer and that I am very lucky that it was caught early before going into cancer territory. About your 2 Lletz, do you know if you have clear margins ? I believe this is the important one that tells you if your Lletz was successful. Take care
Hi @Hop1 thanks so much for taking the time to reply and share your story with me. They didn’t say either way whether it had clear margins. My first one didn’t though.
Judging by the fact I was on yearly smears for HPV, I have a feeling that, similar to you, I’m going to be having regular colposcopies now too.
You’re completely right. The silver lining is absolutely that if it hadn’t been detected, it could have been a lot worse outcome. This then leads me to be grumpy with people like my best friend who hasn’t had her smear. Honestly I’m a bundle of fiery fun these days
I’ve had an update from the meeting. I had to chase it though. In short, they’re still deliberating my results. This won’t change any initial plans with regards to a 6 & 18 month check up but they are considering asking me to come back yearly for ten years.
My lovely doctor explained that the first procedure (colposcopy I assume, not the smear) showed signs of cancer. Whilst neither of the Lletz have found cancer, they are considering regular check ups because of this. I explained to her that I’d welcome yearly check ups! But this whole outcome has left me feeling a little numb, in shock. My first procedure was the one I was least concerned about. After that I skipped out like I’d never see the place again. I had no idea they’d potentially removed cancerous cells. It’s such a mind boggle (that’s not the word I was thinking ) that 4 months ago I possibly had cancerous cells in my body and knew nothing.
I’m now at the stage of wanting to drag all of my friends, family, colleagues by their hair to the doctors if they’re not upto date with their smears. I can’t believe how different this whole story could have been had I not attended mine.
.
) - High grade CIN3 & high grade CGIN. Recommended second Lletz for 8 weeks post initial Lletz.
. Today I received my biopsy results and in typical me form, it’s been a rollercoaster. So here goes, the letter says:
