Unsure and Afraid

Hi all, firstly I’d like to say how brave and amazing all of you on this forum are. I’ve been lurking around for a couple of weeks and have finally plucked up the courage to post something now as you all seem so knowledgable and strong!!

I am 27 and have stupidly never had a smear test. I had my son when I was 24 and ignored all the letters inviting me to a smear. For some reason, I forced myself to book one in on and went for the screening on the 26th Oct. It was quick and easy and I felt so stupid for not doing it before. I had a small bit of spotting after the test, the nurse said she could tell my cervix “wasn’t happy with it” because it was bleeding slightly after she took her swab.

I received a letter on the 6th Nov from my hospital saying my results had been returned as abnormal and that I needed an urgent colposcopy, the letter said I should have a leaflet enclosed explaining everything but just my luck- they hadn’t enclosed the leaflet… Cue mani googling which was very bad for me!!. I received another letter on Sat 7th Nov saying my colposcopy was booked Monday the 9th Nov at 9.30am. VERY quick, and I’m very lucky as from what I’ve read some of you had to wait a while for yours.

I arrived at the hospital on Monday and had a sort of pre-meeting with the doctor who was performing the colposcopy, she said my results had come back as high grade changes and that this could mean cancer and that she thought she may need to perform treatment there and then. She took me to the room and there were two lovely nurses who really put my mind at ease, the doctor carried out the colposcopy and confirmed she had to carry out treatment and also had to take a biopsy. I had to have a local anaesthetic so I can only presume I had the LLETZ. After it all and I’d got dressed, the doctor said she’d had to take a larger biopsy than she thought she would as it was over a larger area (which is why it was painful- it was!), that she didn’t see anything too bad but that she couldn’t tell me anything else. She said I would get my results within 2 weeks.

I was in a bit of a daze and couldn’t really think of any questions to ask apart from “the first letter I got said I should have had a leaflet with it but I didn’t get a leaflet so have no idea what’s happening!!” The lovely nurses got me a leaflet about LLETZ, told me to go home, stop googling and get some rest!!

I am now in complete and utter limbo, I haven’t been told anything about cin1,cin2 etc I have no idea!! Do you think if she had any inkling it was cancer during the treatment, she would have told me??

I have cried almost every night since it happened, I can’t bear to think of leaving my son and my husband. I know we’re all in the same boat here but nobody I know or have told has had this so I just feel so lonely!! Any help or advice would be really greatly appreciated…

Hi Hun. sounds like theyve given you more questions than answers! The only thing I would recommend is giving them a call or making an appointment with your GP so someone apart from Dr Google can answer your questions xx 

Hey hIn try not to

worry, usually its not the colp people who say stuff that that they try and stay away from the term cancer, it was my gp who said it too me and thank goodness no cancer was found, cin1 and 2 aren't major cin 1 can change back its self cin 2 they like to treat chin up hun x

Oh hun, try not to worry too much (I know - easier said than done and I was exactly the same as you so I can't talk!).  It sounds like they haven't handled things too well either in the info they are giving you.  Don't worry about the speed you were seen at.  It depends on your hospital and how busy they are.  I was also seen really quickly.  Re the CIN grades, my consultant gave me a very good explanation (with diagrams and everything!).  What he said is as follows:  There are three grades of abnormal cells, CIN1, 2 and 3.  CIN1 in young women normally goes away by itself, CIN2 sometimes goes away by itself and CIN3 doesn't usually go away by itself.  If you have CIN3, there is a 30% chance that it will develop into cancer in around 12 years time.  Its not an absolute guarantee and there are, of course, exceptions to every rule but the odds really are more in your favour than not.

As the PP above said, they prefer to treat CIN2 than leave it.   

I know how horrible this all is, I'm in the same boat as you now, waiting for biopsy results but do try to keep positive.   Feel free to message me if you need to chat x

Thank you all very much for your replies.. I'm so worried that I've left it too long for the initial smear so I could potentially have cancer that is too far gone to treat because I stupidly didn't have the first smear when I was told too. It sounds so silly when I say it out loud but it could be a possibility, couldnt it? I don't have any symptoms at all though so I really didn't think to make the appointment for that reason as well, but reading up on it there isn't always symptoms either, so now I feel super stupid!!

Do you think if I was to make an appointment with my GP that he may be able to give me some more information? Not necessarily about my own situation but just generally. Or is that something I should have really asked the consultant?

thank you again for your replies, not feeling quite as lonely now. :-)

Hey, you could try your gp, or call the clinic where you had your treatment?  My appointment letter gave me a number for a senior clinic nurse to discuss my referral/treatment.  Did yours do the same?

Hey 

I'm not aware of what cin I am either. I've just been told to wait for results in 2-4 weeks. 

phleap- no it didn't :-( there's a few numbers on the back of the leaflet I was given like the gynae clinic etc, I might try one of them.

Hi Mrsharney, we are in the same boat then :-) when was your colposcopy? Did you have LLETZ treatment at the same time? Feel free to vent to me if you feel you need too, I'd hate for anyone to feel the same way as I do right now, although I'm sure there are lots of ladies who do!

My colposcopy was on Monday 26th. He said he was going to do a cone biopsy but when he got down there he did the loop. I've stopped stressing about it now as it was making me ill and I just realised no amount of stressing will change the outcome. if you need a chat I'm here Hun. It's awful. Please try to keep smiling. Xx 

So you've been waiting longer then I have, it's horrible isn't it :-( 

I feel awful because when I'm at work I kind of push it to one side and nobody here suspects a thing (apart from my line manager who I've had to tell due to my appointments) I feel like I should be crying my eyes out all the time worrying and hat I'm bad for laughing about anything at the moment, but like you say- I can't change the outcome. What will be, will be.

I have my fingers crossed for you, let me know how it goes :-)

Hey hun 

my results are in. Cin3 & high grade cgin. 

Any news your end? X