Hi all I had my first smear last year aged 26, abnormalities were found and I was sent for a colposcopy were consultant found HPV, but no treatment was needed, a follow up requested in 6 months
January I was called up for my repeat smear, 4 weeks on the results came back high grade dyskaryosis cells suggestive of CGIN lesion.
I was then sent on for another colposcopy where the the opinion was high grade and 6 punch biopsies were taken. After another long 4 week wait the results of this showed Cin 1 only.
As both results contridicted each other they sent my colposcopy, smear and biopsy results to MDT meeting where they couldn’t come to agreement on treatment and resent all my results off for further review at cytology lab.
Now 7 long weeks on from my punch biopsies the results are in the hospital rang me yesterday and I’ve been told ive high grade CGIN, and I’m booked in for a lletz procedure possible too hat with my consultant 1 week today.
Question I’m asking is after a lot of reading up is it possible to request a hysterectomys to treat CGIN or am I being over dramatic. I no that CGIN is harder to treat as it can skip layers and can also reacure.
There is a strong past history of cc in my family after both my aunts have had it. And I don’t want to take any risks or mess around. I have a 9 year old daughter and due to marry my partner in September who has had a vasectomy. Are family is complete with 3 daughters between us so I have no worry about hysterectomy in that sense. ( ive done a lot of research into hystecomy, recovery and aftermath)
My main worry is the fact CGIN can skip layers and reacure, I can’t cope with the idea
Of going through this rig morel every 6 months of smears coloscopys and long waits for results.
Honest opinions and advice at this point would be greatly appreciated.
Thanks in advance
Hi there
You've got a bit of a dilemma there, havent you? A hysterectomy sounds like a very, very drastic solution though. It is a major operation and don't forget that if you had it, you would go into the menopause, which at 26 is not something you'd probably want to be facing if you didn't have to.
I have read that CC does not seem to have hereditary links (unlike some cancers, such as some breast cancers, where you may be hereditarily pre-disposed towards it), so although you have two relatives who have suffered, it does not follow that you necessarily will.
There are quite a few ladies on here who have had CGIN treated with a cone biopsy with or without a top hat, and who have been clear of problems ever since. Hopefully a few of them will be along to reassure you too :-)
Best of luck, hope it all goes well for you
I don't think you are overreacting. I have been dealing with LSIL/CIN1 for 2 years, and it recently progressed to HSIL, after a lab error. I am 36, I have 3 children, and my youngest is 11 so I do not want more. I'm tired of the anxiety and stress of it all, and I am scheduled for a hysterectomy in a few weeks. We are all different, and it's a deeply personal choice, but I don't think anyone should think you are overreacting. You know what you are comfortable with, and for me the anxiety and uncertainty of it all has been too much. I am having only the cervix and uterus removed, and since I will keep my ovaries I will not go into early menopause. You have a lot of things to consider, and it is helpful to talk to others, but in the end it is your decision to make.
Hi, I have been trying to find some more info on CGIN as I also have had the LLETZ treatment but I was unsure of what grade I was until i revieced a letter saying the loop biopsy confirms cin2&3 plus high grade CGIN and they are have by a meeting to discuss a management plan.
i feel really anxious, confused and not really informed as I don't know what to expect next and the letter does not say if the LLETZ treatment was successful or not.
feelng totally at a loss and now Im waiting for another letter to arrive.
how often is a hysterectomy needed for CGIN and is it a common treatment option.
apologies if I'm sounding a bit erratic but I'm just unsure of the next steps
xx
Hi hun
you sound as anxious as I am right now, from what I've read up on Cgin there are a lot of different things you can try before getting to the hysterectomy point.
Tge thing that worrys me is that I've read a lot of it can skip layers and be missed, or how it can reacure.also read an article were its says in 60% of hysterectomys Cgin has been found further and higher up.
Im booked in for treatment Wednesday morning with my consultant were I have a long page of questions to ask her to clear my mind.. once I've spoken to her and been more informed I will let you lnow what I know.
Hi, hun
really hope it all goes well for you on Wednesday and yes definetley let me know how you get on feel free to message me as much I iknow that speaking to others is a great support.
i phoned up and spoke to a nurse who said my results for the CGIN were inconclusive and that's why it is being referred to the MDT meeting but that's not u the 11 May. So it's a waiting game again
i totally understand your concern about the skipping of layers as I have also tried to find out as much about it as I can it didn't make m feel better when she told me that only 5% of smears show CGIN didn't know it was that rare but maybe looking at it as a positive effect that it has been picked up.
So im not really sure what inconclusive means or what will happen next please feel free to reply if any body has had a similar experience.
big hugs X
Yes my consultant said the same thing, it's rare to pick up on a smear so usually a lot harder to diagnose And that it was a positive they have found and picked up on it!
My case went to the MDT meeting twice before they made a decision, as my smear and biopsys showed contradicting results they were worried they may over treat me. After another coloscopy they sent my results to a different hospital pathology then held another MDT meeting where they found the results to be high grade CGIN and decided on the lletz procedure.
Its all the waiting around and not knowing I'm struggling with, waiting for results is nerve wrecking. I've researched a lot online and read through hours of posts on here. This site and ladies on here have been a godsend, and talking over things has definitely been a great help with my worrys
When I meet with my consultant tomorrow for procedure I'm definitely opting towards a partial hysterectomy. My aniexty would not cope with 6 monthly reviews, And long waits for results like the last few months! less then 12 months ago I was diagnosed low grade HPV now I'm at cin 2 and high level Cgin things changed fast and the worry that there is only 5% chance they would pick up on it again on a smear is a worry. I'm at the point in life where my family is complete and my main priority is to be around as long as possible to enjoy it. Some people may consider that dramatic but each person is different.
Thank you for your well wishes for tomorrow, will keep you posted on anymore information I can find out xx
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Hi hun
hope you are well and I hope your appointment with his consultant went well. I also am starting to feel anxious about the mdt meeting and thinking about all the possible scenarios which is not helping at all. I am also thankful that CGIN has been picked up as the more I read about it it seems that it us definetley more trickier to detect.
Bug hugs
Hello, I am in the same boat as you guys. Lletz showed high grade CGIN with no clear margins, I had a second one and this did show clear margins. However I am 43 with 2 young children, we have completed our family. After doing a lot of research and reading medical reports, pathology reports etc... CGIN is not ideal and the general census I have concluded is to have a hysterectomy (it’s highly likely to return, tricky to detect on a smear, likes to hide so clear margins aren’t always a definite it’s gone)
The Consultant suggested a repeat smear in 6 months, but after my research this is making me so worried. Can I push for a hysterectomy and will they give me one?
Many thanks
I am new to forum and found your post, can I ask did you ask for a hysterectomy?
