Hysterectomy for CGIN recurrence

Hi :wave: I have had two Lletz and what appears to be cgin high grade and hpv has returned. The next step is an offer of a hysterectomy, as i have have two children already. I am really anxious about the surgery, general anesthetic and recovery. I was wondering if anyone else has been through similar? Also has anyone any advice for whether i should have my overies removed. I am thinking i will as as want to reduce risk of cancer as much as possible. TIA


Hello @Nand5
I’m in a similar situation.
Last May, i went for a coil change and smear test and the nurse wasn’t happy with the look of my cervix so was referred to the colposcopist on the 2 week referral.

I went to see them within a week and had biopsies taken whilst there.

In the mean time, my smear test came back clear so i wasn’t too worried about the biopsy results. However, they came back as cin1 2 and 3.

In the September i had lletz treatment to remove the effected areas.

I heard nothing until 16th December when i received a letter saying there were no clear margins and was asked to see the colposcopist on December 30th.

At this meeting, she told me that my lletz sample had been to 7 pathologists and not one could give a definitive answer to the cells they could see. The colposcopist said it is not cancer but is as close to as possible.

She gave me 3 options.

  1. Have a hysterectomy
  2. Further lletz followed by further treatment if needed
  3. No treatment and observe.

I have decided to go for the Hysterectomy. The colposcopist told me she will leave my ovaries unless they didn’t look right.

I am worried about the surgery and don’t really know the waiting times for surgery.

Other posts have been about having a hysterectomy after a cancer diagnosis so I’m glad I’ve found your post which is similar to my experience.

It sounds very similar. I am sorry you are also going through this. Its a bit of a nightmare isnt it. I am really anxious about the whole thing, i am just hoping everything goes smoothly and no more nasty surprises.

The nasty surprises is also something I’m worrying about. What if I’ve gone through this and nothing found? What if they find something? It’s all a bit surreal, isn’t it?

@Nand5 have you an idea about when you will get your surgery?

No news yet have appointment on 25 January which i am waiting for. Any news on your side? Its very hard waiting, isnt it? I am managing ok, but very tearful at least once a day.

I have received an appointment to go over consent forms on the 13th Feb.
I don’t know the waiting time after that. X

I’ve just got a copy of the letter the colposcopist sent to my doctor. She explains that the biopsy from the lletz treatment is suspicious but not diagnistic for cancer.

Seeing the cancer word in writing is driving me potty!

Its hard when there are so many questions, every week i think of something else i dont really understand. Thinking of you x

@Nand5 the hospital phoned me today. I go in on 27th Feb for surgery.

Hi Holzmar how are you getting on. I have also got a date 16 February. So huge relief to have a date in the diary. I hope you are doing well.

Hi @Nand5
I hope you are doing well. Only a few days left for you to wait. I’m keeping my fingers crossed for you.
Let me know how you get on.

Thank you. I will let you know how i get on. Good luck to you too, i hope all goes well with your op.

How’s it going?
Are you home now?
I’ve got less than a week to go and absolutely bricking it.

It is not too bad, i am resting alot. Not much pain a little uncomfortable though. And if i try to do too much i start to hurt. The operation was about 3 hours from going down to coming up in recovery. I had strong pain relief for the first 24 hours but then just paracetamol. Im feeling good now, but i am out of action except for a couple of hours each day so my husband is doing alot.

Let me know how it goes next week. I will be thinking if you x

Hey! I had my surgery yesterday. Had spinal block as pain relief. I was in 4 hours start to finish and back on ward.
I’m home now so i feel great about that.

Time to recuperate for the both of us now.

Keep me informed of how you’re doing. X

So glad to hear that. Take it easy and wishing you a steady and good recovery xxx

Hi both,

First of all I hope you are both doing well.
I also want to thank you for posting as this is the only post I can find which is similar to my situation.

I will try and make this as brief as possible. I have never had a clear smear. I’m 36! I’ve consistently had mild changes to cin3 which I had lletz for. I’ve never been able to shift HPV (it’s one of the two that definitely cause cancerous cells).

I had a colposcopy this week and the consultant put the screen in front of me with all of my history and said it’s time we do something about this. His options were more lletz, leave and monitor and hysterectomy, he was very much flying the flag for the hysterectomy but said it was my decision. I only had mild cell changes this time, he did offer me lletz again on the day but I said I was going to think about it. He was very informative and obviously if I went for lletz again he said it might not work as it should have worked the first time.

I asked about potentially having another baby and the consultant was ok with it but said it needed to happen ASAP however I have an 18 month old girl but it’s taken 10 years to get there, with many losses, a premature baby no longer with us and even some IVF treatment. I’ve had two miscarriages since the birth of my daughter so my husband and I weren’t overly keen about trying again however before my appointment this week I did raise the topic of trying again. After the colposcopy my husband is obviously completely against trying again.

So I think my thoughts at the moment are is a hysterectomy drastic or would I be completely stupid and sefish not to do it? I need to be around for my daughter and not doing everything in my power to be healthy seems ridiculous. However I’m not embarrassed to say I am totally daunted by this and I really was not expecting for him to be talking about having a hysterectomy so calmly.

My family would get me on the list tomorrow, and I think I know what I need to do, it just feels very serious and it’s totally consumed me for the last two days.

Any advice would be really appreciated, thank you

Its such a hard decision, for me it was easier as i have two kids and didnt plan on having anymore. In terms of the hysterectomy itself, thank goodness everything went smoothly for me and the recovery wasnt too bad, i was able to take a month from work but started back working from home after 3 weeks. My kids are in school but after a week or two i was able to do the school run and drive. I didnt really have much pain after the first few days. Emotionally it has been very upsetting, more the fear of the general anesthetic and then the fear of cancer developing which i am still anxious about tbh (even though very unlikely) for me though it was certainly the right decision.