Hello lovely people
I underwent a coloscopy on 29th October and they did lletz there and then as my smear showed high grade dyskarosis.
I have just had my results back after chasing the hospital and the secretary has confirmed it’s high grade CGIN, she did also confirm that my margins were clear - so they have got it all! Sigh of relief!
Now, after googling what CGIN is, as I had it in my head it would be CIN3 I am pretty shaken up. Apparently my future plan of care is to be discussed in the consultants monthly meeting which has also shaken me. Can anyone tell
Me what their future care was after receiving this result? Will they offer me a hysterectomy?
Hi I had a Lletz under General anaesthetic for CGIN. My biopsy came back as high grade CGIN. My margins were clear so will go back in 6 months for another smear at the colposcopy clinic. My result was discussed at MDT too. I have read something recently that said this is their preferred treatment route for CCGIN now. Hope this helps.
Thank you for your post. I wonder if they will do the same for me although I feel
Anxious about waiting 6 months for the next smear.
I’m nearly 35 and had my kids so I’m just wondering if it would just be easier to remove it all to save the stress. I had an ovarian cancer scare back in September as I needed emergency surgery where they found a 15cm tumour on my ovary and a torsion. My tubes had twisted round themselves 4 times and had cut all blood supply of to my ovary which is why I was in excruciating pain. 5 weeks after that surgery I got my smear results back so as u can imagine, the last few months have been pretty stressful and I’m not sure I can hang on for another 6 months to find out whether the cells have come back again or not.
I haven’t really spoken to a doctor about it but from what I’ve read these CGIN cells can be hidden under normal cells and not sure up on a smear - do u know if that is true?
That does sound very stressful. I had abnormal bleeding last December so was waiting for a hysterosocpy which they did at the same time. A chat with your doctor would be the best option I think. Every patient is so different and unique. I had a biopsy done of my womb at the same time and a polyp removed which all came back clear. My smear will be in January so hoping they’ve got it all out.
I had high grade cgin and cin 1 and was removed with very large clear margins cold knife cone (endocervical margin distance to lesion was at least 1 cm.) All myargins were clear. I had ecc every 6 months and pap every 6 months. That way i am every three months to the doctor for oap or ecc plus colposcopy. All my HPV test come back negative. My cone was examined and they found hpv 16. Six months after the cone i had cin 1 despite a negative hpv test at three months after the cone… I had it lasered and since then i am clear I had also completed the Gardasil vaccine after my cone. I hope you are fine. All I hope for is that this bug never comes back.
Hi Tilly, I had similar results over the summer. I’m 42 and I have two children. I’ve been having smears every three years since I was 21 and I’ve always had a normal result until May this year. My smear this time showed HPV positive and abnormal cells. It was a shock. I went for a colposcopy, he couldn’t see anything that worried him but he took a biopsy and it came back with CGIN. I had a hysteroscopy in August and I had a Lletz under GA. It confirmed CGIN and they also found CIN 3 too. I did have clear margins but my consultant was still very keen on a hysterectomy due to the unpredictability of CGIN. His attitude was you’re 42 with a complete family why live with the risk.
I decided to go ahead with the hysterectomy on the 15th November. I am recovering well so far . I’ve had my pathology results back and they still found residual CIN 3 and CGIN so for me the hysterectomy was the right decision as they didn’t get it all with the Lletz after all. A hysterectomy is challenging emotionally and physically but I’m 17 days post op and I’m feeling well. The waiting was worse. It’s a huge relief that the operation is over and that the abnormal cells have gone. I still have some hurdles to go, hopefully clearing HPV and getting through the vault smear in 6 months but I’m feeling much more positive than I have in ages. It really has consumed me for 6 months.
Ah I’m sorry you have had to go through this and glad to hear u are recovering well. As you have had the hysterectomy has it reduced the chance of any cancer down there now? Or do u need the HPV to clear to be out of the woods completely?
To be honest my thinking was just to go for the hysterectomy as well, as I keep thinking what if they have missed something. I asked for a hysterectomy back in June because of the problems I was having with my ovary but they said no because I was too young. But at the same time I also asked them to do a smear and they said no because I wasn’t due until October and it would just get thrown away . If they had of done it they may have found these cells sooner!
Do u mind me asking how old you are? I’m wondering if they will offer me this or a come biopsy?
Hi, I’m 42. Honestly ask me anything. I think HPV puts us at risk for other cancers too but cervical cancer seems to be the most common. I am a little worried about a condition called VAIN which is basically abnormal cells in the vagina which may turn into vaginal cancer one day. My understanding is it’s a lot less common than cervical cancer but clearing HPV would take away the risk, I believe. Rather than worrying about that though I’m going to focus on my recovery and getting healthy as you need a strong immune system to clear HPV so worry, stress etc will not help me. At the moment I can’t exercise other than short walks so I’m trying to eat healthy foods and I’m loading up with vitamins.
If you have anymore questions don’t hesitate to ask. x
Ok so realistically we need to clear hpv which should be possible, fingers crossed! I think I’m going to push for a hysterectomy as like I say I’m worried about them leaving stuff behind. I’ve had so many issues I’m totally over being pulled from pillar to post! And they’ve already removed an ovary so they may as well take the rest away! Did they do your hysterectomy via keyhole? Also Did they take everything away as google tells them are a few things classed as hysterectomy?
Yes, they did it laparoscopically with vaginal assist so I have a mark in my belly button and two very small incisions on my stomach. I can honestly say I feel much better than I expected for this stage……I keep adding the fingers crossed! The first week and actually the first 3 days were the worst as a lot of my pain was gas pains as they fill your stomach with carbon dioxide. Constipation isn’t fun either. Once all that had passed I’ve been managing on paracetamol and after the first week I was only taking it now and again. I’m mainly just tired now. x
Oh they took everything away apart from my ovaries, they checked them said they looked healthy.
Ok I think I’d prefer key hole. I had a c section with my youngest so I was imagining that pain again as it was horrendous for weeks but when they removed my ovary in sept it was key hole and wasn’t as bad (obviously still very painful). I’m glad u are on the mend and recovering well.
What was the benefit of leaving your ovaries in? Did they tell you why?
My consultant said because I’m 42 and I have no family history of ovarian cancer he would recommend keeping my ovaries……the caveat was they would be checked and removed if he saw any issues during the op. I think if someone is of an age where menopause is still a number of years away and their ovaries are healthy it’s better to keep them. If your in a high risk category for ovarian cancer they will recommend taking them regardless of age. Early menopause can come with an increased risks to bone density, heart disease etc. Then there’s dealing with menopause symptoms earlier than usual, hot flushes etc. HRT is usually recommended. I would also recommend joining Hysterectomy sisters U.K. on fb as I’ve found it very useful. There are some stories that are a bit scary with complications but I think you need to remember that most people only post when they have an issue and the majority of people have good recoveries. Some people’s surgeries are a lot more complex with fibroids, endometriosis too.
I hope you are well and not stressing to much about your CGIN diagnosis. Thought I would share my story to give you a bit of an insight on what your outcome could be. I was diagnosed with CGIN so I had a LLetz to remove the cells and he mentioned that the best soloution would be a hysterectomy which I wasn’t really ready for at the moment in time. I’m 29 but do have 2 children already thank god. As my results came back from the lletz as stage 1a1 cancer. So now I’m waiting to be put in the list for a hysterectomy to be sure it doesn’t return, but firstly I’m waiting for my 6 month check up to make sure I don’t need any other treatment first. But even with just CGIN and being 29 I was offered a hysterectomy straight Away so if you think that the best solution you should push for what you know is right xx
Thanks for replying. I’m sorry you are going through this, it’s the worst feeling in the world and I’m sorry the cells were cancerous.
I have spoken to the specialist nurse who was with the doctor when they did the lletz and she has reassured me slightly. There was no malignant cells in the biopsy that they took but the CGIN was very few focal cells but they were very high graded. I’m not sure what that means but she was adamant they would not give me a hysterectomy at my age. I’m going back in may so when I go back I will push for a hysterectomy or even go private if I have to. I am having other issues anyway so I do feel it is the best hung for me.
I hope you get your hysterectomy soon and recover well from the surgery!
Hi Tilly, how are you?
I had an abnormal smear, hpv positive in October last year. Colposcopy on Nov 1st where they did a LLETZ procedure on the spot, turns out I had cgin which had shown on my smear, they hadn’t told me in the letter. Consultant said he’d removed a considerable amount of my cervix & had removed all he could see. Was quite positive.
Fast forward to New Year’s Eve, I had a phone call for me to go see him today. The piece he’d removed from my cervix had a 1cm area of cancer in it. He hadn’t seen it at the time, it was within the piece he’d removed. Now I’ve to have an MRI & the suggestion at present is a radical hysterectomy.
I’d had an unrelated pelvic MRI last year & my consultant had already contacted the radiographer that reviewed that, he couldn’t see anything regarding cancer. Hopefully this other MRI will say the same.
I’ve just turned 40, have two teenagers & im game to just get it all whipped out now! I wish you well xx
Ah I’m so sorry to hear that they have found cancer but I’m glad they have removed it all. Have you had the hysterectomy yet?
The doctors have decided that the best plan for my treatment is to go back for another smear on 6th May. It feels like such a long time away but I’m trying to stay positive.
Not yet, I had covid which meant no op for 7wks afterwards , luckily that’s within the waiting time I was facing anyway, so it’s not extra.
The waiting is the worst. May does feel a bit far away but this year’s already flying in, I hope it keeps doing so for you.