Hi Ladies, I had my hysterectomy 12 days ago for CIN 3 and High grade CGIN. I had a Lletz in August, I did have clear margins but my consultant was still recommending a hysterectomy due to CGIN being harder to detect and more unpredictable. I am sooooo glad I went ahead with the operation as my pathology still found residual CIN 3 and more high grade CGIN. I feel very lucky today and for me it was the right decision. x
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Hello Lynnie1 so happy for you all done and hopefully you can recover and move on from all this forever 
. Yes definitely was the right decision with CIN3 and CGIN still in your system. Wishing you a speedy recovery. Take care 
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I hope your recovering well, this is exactly what I needed to hear really, I keep thinking am I making the right decision due to have clear margins but I had CGIN and stage 1a1 cervical cancer but I had clear margins so was unsure if hysterectomy was a bit drastic but this makes me think I won’t regret the decision x
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I felt exactly the same, it felt drastic to me too, at times and I had doubts on many occasions. I have to say because I had clear margins I was expecting it to be all clear and this operation was a precautionary measure to prevent reoccurrence. The consultant did say he couldn’t say for sure but I was still quite taken aback when I got the letter today. However I feel very lucky that it’s been found and removed. A hysterectomy isn’t without it’s challenges, emotionally and physically but I’m 12 days on and I’m up and about, pain is minimal, managing without painkillers for the most part and if I do need them paracetamol is fine. As long as I avoid lifting and bending I’m quite independent in the house too. x
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Lynnie, i hope you are fine and are doing eell after hysterectomy. You put this nightmare behind you and that is a huge relief!
I was diagnosed with high grade cgin and cin 1 and i had it removed with cold knofe cone in April 2020. The cone was 2.5-3 cm deep. My endocervical margins were at least one centimetre away from the lesions. All margins clear. I had hpv test and pap three months after cone. All came back fine. Then at six months test of cure cin 1 was found. I had it lasered. Since then all my tests HPV, ecc and pap are all clear. I was surprised by that fact and i had my cone examined for HPV. The strain 16 was identified. I hear you had skip lesions. If you have you cone pathology please have a look and tell us the distance of the lesion till the endocervical margin if it is reported. I am 36 years old and having a skip lesion is something that terifies me. Did you test HPV positive after your cone? What is your age? Sorry for all those questions, it would be a huge help to share this information. Thank you in advance!
Hi Rita, thank you, I’m 16 days post op now and I’m recovering well. I had CGIN and CIN 3. I had a Lletz in August to remove the cells. I was told I had clear margins but I wasn’t given any further details, sorry.
Despite the clear margins my consultant was still very keen on a hysterectomy. I’m 42 and I have two children. I didn’t have any plans for more. I didn’t have another HPV test at the doctors but I did pay for a private one, that I did at home, 2 months after my Lletz and it came back positive. HPV 16 too. There were points when I questioned the hysterectomy and wondered if it was too drastic but my positive result reinforced it was the right decision for me.
I’m quite an anxious person too and the monitoring/testing that I had over the summer was consuming me. I don’t think I would have coped well with that going forward. That’s great news you have tested negative though. x
Hi Lynnie
I’m so pleased to hear your news. This was exactly my experience. I had residual CGIN too and it totally validated my decision to go ahead with the op. It sounds like you’re doing really well snd in a good place with it. Don’t rush your recovery though! Enjoy time relaxing. I’m 10 months on and feel good save for when I pushed some furniture the other day and got a backache but otherwise I can forget I’ve had the op.
Sending love to you and all ladies going through this. Xx
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Thank you Victoria, it really helped me to hear your story and thanks for all your advice beforehand too. It definitely helped me prepare. xx
Having a look at hysterectomy posts and this is so helpful - thank you. I had a smear detecting high grade CGIN glandula neoplasia in October, and a colposcopy & LLETZ in November. The results strangely showed no abnormal cells, but I have been called back to have a second colposcopy next week. I understand that the lesions may be higher up and the CGIN cells detected at smear test may have broken away & ‘flowed down’ from higher up, so may have been missed by the first LLETZ. They have told me hysterectomy prob be recommended after this second LLETZ. I am 42 with 4 kids (one I am still breastfeeding) & worried about possible menopause & side effects following a hysterectomy . Also just hoping it will be preventative measure - these CGIN cells sound very scary with the higher chance of cancer being found.
I hope you are continuing to recover well and are back to full strength with peace of mind xx
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Hi Abi,
Sorry to hear you’re going through a similar experience. It’s extremely stressful and I hope I can help answer any questions. It sounds like you’re very fortunate your smear identified the abnormal cells, CGIN is harder to detect and in your case they must be particularly high up.
A hysterectomy isn’t an easy decision but I have to say it’s not been nearly as bad as I anticipated. I’m also aware I was lucky I had this as an option. I’ve been very fortunate that I had a straightforward recovery with no complications…so far……keeping everything crossed that continues. I’m 10 weeks post op tomorrow and my main fear now is a prolapse so I’m working on my pelvic floor and I’m hoping to start exercising again in the next week or two as I’ve put on a fair bit of weight. I’m sure Christmas has played a part in that though and I can’t blame it entirely on the operation. 
I was also lucky that my ovaries were healthy so I managed to keep them. This means I avoided surgical menopause although there is a higher chance of them failing within 5 years. There have been challenges but I’m so grateful I had the surgery and my pathology results proved how lucky I’ve been. x
Hi all I wanted to share my experience and how hysterectomy has turned out to the rights decision for me . By way of background I had a LEETZ in 2006 for CIN3. Annual follow up from 2006 until 2022 . Low grade changes were found in 2022 ( Pap smear said CIN1) and I tested positive for HPV16. A coloposcopy was undertaken which confirmed CIN1 and I was advised to come back in 6 months as the changes would ‘resolve by themselves .’ Went for another pap and CIN1 was confirmed again and I was offered the choice of LEETZ or observe . I couldn’t handle the uncertainty and elected to proceed with LEETZ under GA. After a nerve wracking few weeks I got the results , CIN3 with endocervical crypt involvement!!! My gynae couldn’t explain the anomaly , the lesion was hidden and the Pap smears didn’t pick it up. I was referred to a gynae oncologist and was given two choices - close surveillance or hysterectomy ( keeping my ovaries as I’m 41 ) I couldn’t deal with the constant anxiety of ‘what if something is growing there ‘ and have thankfully had my kids so I elected to have a hysterectomy , it hasn’t actually been that bad ! . Got the pathology back yesterday and the findings were that there is STILL very, very , very early pre cancer which I have been advised could or could not become malignant ( it’s called metaplasia and hyperplasia ) My takeaways are they I have made the correct decision and I’m very grateful that I have made it through . Disclaimer - I’m not based in the UK so not sure when hysterectomy is offered there . Also , everyone’s situation is different ( although we are in the same boat to a more or less extent ) I wanted to share my experience and to wish everyone on this forum well . It certainly made me feel less alone during this trying time 
Reading these posts is so helpful - as I am due to have a hysterectomy in a weeks time for similar reasons. I have had persistent HPV 66 since at least 2019 when they started to give the HPV results. Before that just told cervix is normal or not. After having the lletz last year to remove a C1N1 1cm by 1cm the virus is still present. Constant checks and constant worry so my consultant suggested a hysterectomy. The only problem is I am elderly - late 60’s.
Has anyone else in this age bracket had a similar experience? If so would love to hear how you got on as it is such a big operation.
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