CGIN & Hysterectomy?

Hi ladies, I’m looking for some advice. I’ve just had my appointment with my consultant. The choices are not a surprise as he has previously mentioned this but now I’ve spoken to him it’s an actual decision. So I’ve recently had a hysteroscopy and Lletz to treat CGIN and they also found an area of CIN 3. I did have clear margins. I can choose to monitoring or a hysterectomy. The consultant said he would recommend a hysterectomy within 6 months. I’m scared of a big operation but it sounds like the safer option.

Hi Lynnie. A big decision. Really really personal depending on circumstances, age, and… feelings. I didn’t want one initially, and was relieved to be told I was “inoperable” two and a half years ago. By the time it was offered at Christmas, I was glad.
I recommend talking to a Clinical Nurse Specialist if you have access to one. Or calling Macmillan helpline to talk and work out all the ins and outs of what this means to you. How others feel about having a hysterectomy seems to vary on a wide spectrum from full grief to simple MOT. Even though I wanted mine in the end, it is not without consequences and these depend on the type of hysterectomy they recommend for you. With bery best wishes

1 Like

Thank you for replying. I’m glad your hysterectomy went well and it was what you wanted. How did you find recovery? So my hysterectomy will be through keyhole, everything will be taken away apart from my ovaries.
I’m 42 and I have two children (ages 10 and 5) so losing my fertility is not an issue although ironically my 5 year old son has not stopped asking for a baby recently! It was never going to happen but I did find myself getting emotional when he asked the other night. I know I’m very lucky to have the two I’ve got.
I think the main thing is probably fear of the operation and the possible risks. I have health anxiety.

1 Like

Hi @Lynnie1
I had my hysterectomy 8 weeks ago tomorrow for CGIN, some cancerous cells were found with me and lots of precancerous. I could have had lletz again to see if it worked or hysterectomy. I am 39
With my kids so I opted for the op, as my consultant advised.

Mine was keyhole, with ovaries left behind. I have severe health anxiety, had never had an operation or general anaesthetic so I was a complete state leading up to it but it was all nowhere near as bad as I thought from the actual op to the recovery.

Feel free to ask anything :heart: Xx

1 Like

Thank you. I’m so glad they caught it so early for you and you’ve had a positive outcome with the hysterectomy. Although my cells are still precancerous I had CIN3 and CGIN so I feel very lucky that this has been found. Still a shock however as for 20 years I’ve always had normal results. I feel a hysterectomy is the right decision for me too. I don’t think I could cope with the monitoring/testing long term and always wondering if something’s been missed. Especially with CGIN it certainly seems trickier to manage. Do you have any tips for a good recovery? My operation isn’t going to be until October so I’m going to try and get a bit fitter and eat better. x

1 Like

@Lynnie1 yes I can imagine, it doesn’t matter what grade it’s at or if pre cancerous it’s as much of a shock and worry!
I couldn’t have coped living with it and my consultant said it’s stressful to live with so I had to make the decision really as I would have driven myself mad

As for tips just listen to you’re body. First few days is hard going but after just take things slow, eat well, get out for short walks and have something to keep you’re mind busy. It was miles better than I ever expected! Xx

1 Like

That’s really good to hear. I joined hysterectomy sisters U.K. on fb and although it’s been a great source of information I’m also finding some of the stories and what can go wrong quite frightening. :sweat_smile: I’ll need to stay positive as stress won’t help and I’ve still got a couple of months to go. Thank you for the advice. xx

Hello Lynnie 1 I hope you don’t mind me asking but if you had free margins and only precancer cells why are they recommending hysterectomy? I had cin3 and CGin with no clear margins. Hysterectomy was a possibility for me but also a 2 lletz. After I had a 3 month’s post lletz check and all clear . Now need to go again in 3 months to make it 6 after Lletz. Sorry for asking but all this is just confusing specially when different doctors have different strategies. I have also completed my family so fertility is not an issue.

I was advised by my consultant to go for a hysterectomy because of the CGIN. The alternative would be close monitoring but as he’s risk adverse and I’ve had my family he believes a hysterectomy is the safer option. I have been with my husband over 20 years so it looks like I’m one of the unlucky people that isn’t going to clear HPV. CGIN seems to be harder to detect than CIN and it’s a bit more unpredictable. That’s interesting that you’ve been given different advice for the same thing.
My worry is and probably a question for my doctor……what happens if the HPV remains after the hysterectomy? Will it continue to attack other areas?

Hey, I’ve just read your post again. So if you have 6 clear checks after your Lletz….what happens? I was under the impression I would need monitoring long term. That put me off as I felt my anxiety wouldn’t cope with the stress of constant tests and waiting for results. Can I ask what they do in your checks? Is it a colposcopy/smear? My CGIN wasn’t found in either……only after an initial biopsy. The second biopsy from the LLetz also found a focus of CIN 3. My smear came back with low grade changes and he didn’t see any lesions at the colposcopy. Is a biopsy needed every time?

Hello. On my 3 months after Lletz check ,the doctor did a coloscopy but couldn’t see any abnormal cells on the cervix so she said no byopsy need it. She also did a smear test in that area and in the inside bit of the cervix I believe is called the endocervical canal those took about 10 days for the result to come out and were all normal. She told me to come back in 3 months to do the same checks + hpv test. and hopefully results will still be OK. But that I will need to come back for this test every 6 months for minimum 2 years . So yes definitely very close monitoring. Maybe the CGIN I had was not very high up in the canal not sure if that makes a difference.

:rofl::rofl: colposcopy sorry

On one hand I am happy that results were good but I can’t stop worrying and keep thinking something will go wrong. I was already sure about Hysterectomy and thought of it as a way out for this nightmare but now I am happy but confused. But I guess they can’t go ahead with Hysterectomy with me because results are good. I believe you have low grade still after Lletz maybe that is also a factor.

1 Like

Thank you for sharing, that’s really helpful. It sounds like you’re getting properly checked so that’s reassuring.

I’m going to double check with my consultant, he did say I had high grade CGIN. Not sure if that means there’s more of it or it’s higher up? He definitely said I had clear margins though. I think I need to ask more questions to make sure I’m making the right decision. x

Hi Lynnie1
I recovered very well. Not keyhole for me, no. I know someone who had keyhole and seems to be recovering ok. I walk a lot. It seems to have helped. I really recommend you talk to a professional if you’re not already regarding your health anxiety. Take care

1 Like

Good luck and let me know how you get on with your doctor. hopefully we can all look back at this one day and say is over for good but try not to worry too much and enjoy life also :hugs::hugs:

1 Like

I understand your concerns, I was in the same situation: I’m now day 18 post op. I had a full hysterectomy with the incision through my old section scar. It’s no walk in the park, but I have zero regrets as I’ve spent the last 10 years going back and too with the same issues as you. I’m only 40, but I’d :100: say do it. Just prepare yourself for the recovery as I totally underestimated it. I’ve had 3 sections previously which I bounced back from, everyone warned me it’s not the same, and boy do I wish I’d have listened.

Go for it, take your time to recover and enjoy a cancer free future xx

3 Likes

Hi Laura, thank you for sharing. It’s all been quite unexpected for me as I’ve never had any issues with abnormal smears until 3 months ago. Did you have CGIN too?
I’ve been told my hysterectomy will be done through key hole. Can I ask why they gave you a full abdominal. Was is because you’ve previously had a csection? I’ve been advised to keep my ovaries too. I was going to but removing the risk of ovarian cancer is definitely a huge plus. I’ve been told removing the Fallopian tubes reduces the risk too as they believe ovarian cancer starts in the tubes. Obviously removing them eliminates the risk completely. How are you finding surgical menopause. I know just like natural menopause some people have a tougher time than others. I hope the rest of your recovery goes well. xx

They could have gone in key hole. But given I’d had 3 sections I had no issue them going in through the abdomen so they could see exactly what was happening.
I did the research and thought I wasn’t prepared to take the risk of any other problems later down the line. Especially given the recovery isn’t easy, don’t like the idea of doing this twice. So full hysterectomy made the most sense.
I’m nearly 3 weeks post op. Have to say… I’ve probably not rested enough.:. So been plagued with infection. Currently back in a@e waiting for I.v antibiotics… so do as I say not as I do… and rest… at least for the first 2-3 weeks solid.
I was a smart arse after having 3 sections thinking I was ok. Well it’s not a section!
In terms of full my menopause symptoms- so far so good. But I’ve been doing loads of research and bought some herbal alternatives to hrt. As I’d rather wait till I totally have to use that then just start it xx

1 Like