CGIN and fertility

Hi Claris and welcome to our group.

I can understand your worry about having a colposcopy and I’m sorry I can’t identify with having had exactly the same happen to me as I had cervical cancer, but I just wanted to make a couple of points. 

When testing is done on a cervical screening, it is for high risk hpv, not low risk strains-there are many different types of hpv and testing is only for high risk hpv which can potentially cause issues with cell changes. So, although there was no mention of high risk on the letter, it is the same for anyone who tests positive for hpv…it’s going to be high risk hpv if it’s identified. 

CGIN refers to the location of the cells, so again it’s not necessarily something that would have been specified in the letter. But the colposcopy will be a more detailed examination where it will show where any abnormal cells are located. It would be unlikely to have a hysterectomy just on the basis of abnormal cells, although it can happen… but that’s the future that you don’t know about so early speculation honestly won’t help you..

I hope when you have your colposcopy any treatment required will be successful with no impact on your fertility. 

Sarah xx

Hi Sarah

Thank you very much for your reply and I’m sorry that cancer has affected you.

It’s difficult when you read other people’s stories on forums like these. Most forum posts I’ve seen with women with CGIN seem to end up with having cancer or being referred for an urgent hysterectomy.  I try not to compare myself to others because everyone is different. But, reading other people’s stories makes me worry. Most women also seem to have already had children so future fertility isn’t a concern to them, whereas for me it’s a huge concern.

my colposcopy is next Friday and I’m hoping that I can discuss my options and impact on future fertility with a consultant and not be rushed. X

Hi Claris 

I guess it’s inevitable that we can try to compare ourselves to others and that might be an issue if you read different forums. I’m only part of this forum, and I’m not sure how many women with CGIN do develop cancer or need to have a hysterectomy. I was post menopausal at diagnosis, and my cancer was too advanced to be able to have a hysterectomy so my situation was very different. 

I’m sure that fertility will be a major part of any discussion you have with your consultant, given your concerns and the fact that you are due to start another IVF cycle. I’d suggest making a list of questions before you go to your appointment so that you make sure you get all the answers you need. 

Sarah xx

Hi Claris,

I can imagine how difficult this can be especially now that you are half way of an IVF journey. I just wanted to mention that CGIN is linked to adenocarcinoma if it is developed and become cancerous, it starts at the inside of the cervix and in some very unlucky cases as mine can be missed by the smear test. In my case I had never missed a smear test and always was negative and after having some bleeding turned up to be stage 2b. It is good that it was picked up early and you can have the treatment. As it was mentioned earlier knowing what to ask before the meeting it will help.

All the best with the treatment.

xxx

Hi Claris,

In searching for some information I came across this thread. I know you will have had your colposcopy and LLETZ treatment by now and I very much hope you had good news following this. But in case you are still worried about CGIN treatment affecting your fertility - I wanted to share my positive experience as I also had CGIN and information on this was much harder to come by - so hopefully you or someone else might find this useful.

After no history of HPV showing up on smear tests for 10+ years I received a positive HPV result in October 2022, then one year later in November 2023 it had not cleared, and a Colposcopy showed I had CGIN. I had a LLETZ procedure during the Colposcopy to remove the abnormal cells, and the test results from this showed no cancer was present. In June 2024 I went back for a check up which included a smear test and another Colposcopy (in which they also did a biopsy, just in case). The results of this was my HPV was no longer detectable, and there was no sign of abnormal cells / CGIN / cancer. I was given the all clear for now and told I would need annual check ups at the Colposcopy clinic.

Regarding fertility, I am 35 and currently pregnant (now 30 weeks) with my first baby. The treatment did not affect me getting pregnant at all, but if you do become pregnant, make sure to mention in your antenatal appointments that you have had a LLETZ procedure as they will need to check the length of your cervix during pregnancy just to make sure there is no shortening of the cervix too early in pregnancy. This is important for everyone who has had a LLETZ procedure, but particularly for CGIN as they sometimes have to take more tissue due to the location of the abnormal cells.

I was put on progesterone at 20 weeks pregnant as my cervix was slightly on the short side, but the progesterone seems to have helped and I am hoping to make it to full term. For more severe cases there are procedures such as cervical cerclage that they can perform if this is needed.

I hope this helps you or someone in a similar situation with some hope, and shows that CGIN doesn't necessarily mean definite hysterectomy, cancer or added fertility issues. 

Wishing you the best of luck with your treatment and your fertility journey.

Sophie xx