Firstly, I’ve been reading this forum and feel a bit like I shouldn’t be here as many of you had it a lot worse than me.
Has anyone been in this situation? Looking for experiences of what others have done as there’s only so much doctors will actually tell you!
I’m 36, have 2 kids ages 6 and 3. Family complete. Attended regular smears since age 25 as invited.
Smear end 2020 was HPV+ but no sign of abnormal cells so put on 12 month recall.
Smear end 2021 HPV+ and “moderate/severe” abnormal cells
Colposcopy Feb 2022 resulting in LLETZ to remove said cells (8 week wait on labs)
Repeat colposcopy and LLETZ April 2022 where I was told Feb’s one found actual cancer (stage 1A1) and they needed to take more to ensure clear margin of healthy cells. (8 week wait for labs!)
Consultant appointment June 2022 to discuss further treatment options…
He said it almost 100% certainty that all the original malignant cells are gone from both the LLETZs but there’s about 10% chance the cancer will come back. I’m to have a review colposcopy in October (6 months after last one), then annual smears for at least 10 years.
So as an alternative I’ve been offered a hysterectomy. Uterus, cervix and falopian tubes out. Ovaries left in. Laparascopic. 1 night in hospital, 6-8 weeks off work.
So really I want to know about others in this situation. Did you go for the monitoring of hysterectomy? and Why? If you had the op, what side effects (early menopause?) have you experienced? Anything else I should be considering?
Hi milkgoblin and welcome
Wow, your case is an example where HPV primary screening meant your cancer was detected very early and you got prompt and likely curative treatment. Please don’t feel you shouldn’t be here, we’re all different and every experience of cervical abnornamlities/cancer is of value.
I can’t comment on your situation as i haven’t had a similar experience but hopefully others will come along who have. But if you’re not already aware to let you know there is a huge community, called Hystersisters, for sharing experiences about hysterectomies - see following link:
Thanks, I really appreciate that. Off to check that link now!
Hey, I’m so glad this was caught early. I found out I had CGIN probably around this time last year. I was advised that a hysterectomy would be an option or alternatively I could choose close monitoring. I decided to go for a hysterectomy as I didn’t want to live with the risk. I also have two children and I’m 42. I’m quite an anxious person so the thought of having to go through the process and the agony of waiting for results just wasn’t worth it. For me, it was absolutely the right decision as it turned out I still had CGIN present much higher up and it was missed by the LLetz. I think this is less common for CIN changes but as CGIN are glandular changes they are harder to detect. It was a big operation but I have to say my recovery was really good. I kept my ovaries so it wasn’t instant menopause although the ovaries do sometimes fail which is a risk of the operation.
I would recommend joining hysterectomy sisters U.K. on Facebook as you can find out so much useful information. It sounds like there is no immediate rush to decide as it is a big decision. You could also choose monitoring and then decide on a hysterectomy further down the line. xx