Help with CGIN rollercoaster please

Hi everyone,

Hoping for a bit of shared knowledge from you guys, it's amazing to see how many women have gone through this rollercoaster. 

I have been diagnosed with high grade CGIN adenocarcinoma and had a LLETZ on Tuesday which was surprisingly painless although the journey home was a shock as I wasn't at all prepared to be getting the procedure!

I would not be as concerned but the reason I went in for my smear (first since 2009) was because of heavy post-coital bleeding which happened twice in May/June but has not happened since. Smear came back with atypical glandular cells so I was referred to hospital where I had 2 ultrasounds that revealed nothing, colposcopy that revealed nothing and hysteroscopy that revealed a healthy womb. However the repeat smear revealed the high-grade cgin.

So, my question is, is it possible that the CGIN could be advanced stage CC considering the post-coital bleeding? Is it possible that the LLETZ has gotten rid of it? The consultant told me that she does not think it's cancer, can she say that if there is any doubt? She did tell me that whatever happens I'll be seeing her annually for the next 10 years and that when I've had my kids I'll be encouraged to have a hysterectomy. I'm 32 by the way. 

If anyone has ANY words of wisdom, good, bad or indifferent please share them! I'd like to be prepared for the worst case scenario on the 3rd Nov!

Thanks girls

xxx

Hey welcome to the cgin club, have you had a biopsy yet? You've had a few scans already? Is this due to the cells or because of bleeding? They said on my letter suspected cc but it doesn't mean it is,  Sometimes cgin Cells can be got rid of by a loop biopsy if a clear margin round the edge of the loop no further treatment required but if around on the loop yoi can have another lletz under ga or other treatments x

 

 

Hi Tasha,

The LLETZ is the only cervical biopsy I've had. They did a biopsy of my womb and the results were fine. CGIN is so scary isn't it? I've been walking around in a daze since the LLETZ on Tues, had to take a day off work because of lack of sleep and stress. I'm a worrier anyway so this is just a barrel of laughs, not! But I would like to know people's honest opinions and experiences. I'm concerned about 1. Never being able to have babies and 2. Dying from this. 

Don't think o much in to it, there are many treatments to preserve fertility, I've seen people who had another lletz under ga and got the all clear 6 months later, cgin cells are like cin cells so aren't cancerous just remember that so because you have them doesn't mean cancer, it's Hard I know ny advise is not to live by the cells as it's just making you Ill, ive been stressing as I've been waiting for resulta and thank goodness my partner is so supportive and I haven't thought once about it Chin up Hun try not to over think xx

Wow Tasha, you have a great attitude! I hope I can get me some of that. I'm also freaked coz I've lost nearly half a stone in 2 months, I have been eating like a horse, I'm wondering if it's stress but obviously I'm thinking it's cancer related! You will be getting your results in the next few days right? Mine was also pushed to 2 weeks. I hope you are ok xx

I've been the same I've never been able to put weight on my whole life till I had kids I was 6stone 6 at 5ft 7 and was tiny after kids I'm now 8 stone 9 so a nice healthy weight but I can loose up to half a stone in weight with stress or other indicators try not to think cancer Hun, I'm 24 and it's certainly not the end of the road if it is as there as so many treatments and so much knowledge your in the system they treat all abnormal cells straight away and take precautions xxxx

Hi Maeve ;-)

I don't know what's causing the post-coital bleeding but it's not advanced cc, which is visible at colposcopy. You might possibly have a teeny bit of cc, but it's not advanced. Yes, it is possible that the LLETZ has got rid of all of it :-)

And stress can cause weight to drop off at an alarming rate!

Be lucky :-)
Tivoli

Hiya as tash says welcome to the cgin club seems quite a few of us now going. Through this rollercoaster , try and stay positive and optimistic easier said than done but stress can cause so much to your body I can loose a stone in a very short time due to stress your docs seem on the ball and you have had a lot of tests so they have looked at all the places the glandular cells can arise from so keep positive all has been removed from the lletz of the cells , I know its hard the waiting the what ifs I’m nine days post lletz now waiting for results but hoping no news is good news, sending you positive vibes and hugs Xx

Smear shows high glandular changes
Fast tracked for coloscopy
Lletz treatment
Awaiting results nine days post lletz

Thanks Tivoli, have been reading some of your posts, your positive attitude is inspiring and your posts v amusing :) I hope whatever happens I'll be able to muster up more strength than I have at the moment, the shock has been really intense as I've never really had anything wrong with me, smoked for a couple of years in college but haven't touched them in years, barely drink, I eat well, exercise. Am not ready to give up the hope of having babies, it's the one thing I really want and if I had to have a hysterectomy now I'm not sure I would ever recover emotionally. Xx

Stress can really do a number on you alright, I've sufferered from anxiety for the past 2 years and had literally JUST gotten back into some kind of half-decent sleeping pattern, then this happens. I'm 5'8'' and down to just over 8 stone, my friends n family are worried about the weight loss but I am eating more than ever!! If this comes back clear I an never going to take a day for granted again. Life is so precious and we have no idea how much until it is threatened. Everyone I look at I think "You don't know how lucky you are!!" Xx

Sounds silly have you had your thyroid checked? Xx

Yeah, had all my bloods done last month, all

clear, no thyroid probs!! Be sure to let us know as soon as you get your results!!! Fingers crossed for you xx

Will do lovely xx