CIN3 diagnosis at first smear (25), lletz booked.. panicking

Hey!

I've been lingering round here since I was asked to go for a coloscopy, but now I'm hoping someone might calm me down a little. 

I had my first smear at the beginning of May (I'm 25.5) and the nurse was very sweet and whilst it didn't hurt I got very light headded after working myself up a lot. She said my cervix looked healthy and my coil was sitting just fine. I went on my merry way, then I got called back for a coloscopy due to being high risk HPV positive and borderline nuclear changes being seen on my smear. 

When I went in for the coloscopy the doctor was pointing out that it was 'milder than mild' (or something to that effect) and tried to calm me down. I had the coloscopy and when she was in there she said she would have to take a biopsy and that it was lilely i would have to come back for further treatment (which means removing my coil too), i went green and ended up sitting in the surgery for an hour after a panic attack.

Two weeks after the coloscopy I have had a letter back saying that it is CIN3 and I need a LLETZ procedure. I'm now freaking out as I don't understand how it could have been very mild changes on the smear and now suddenly its really deep changes. Also that they've replied so quick (2 weeks) and booked me in so quick (another 2 weeks), surely theres more than meets the eye?

I am also freaking out about the coil being taken out, as even though none of the procdures (including the coil fitting) have been remotely painful every time I have had panic attacks and been very very faint so I don't want the coil removed and only to have to have yet another procdure to have it reinserted at another time (and can I even have a cil put back in- it's the only method I've found that works with me and is what I want)

I'm also petrified about CIN3 being more than CIN and being cancer.. i feel like my mind is spiraling out of control and I've convinced myself of the worst, getting the feeling that the doctor was evading worrying me but it's more serious than I think. I'm a medical scientist by trade, which you'd think would make me more rational, but all I'm doing is analysing why i might have one procdure/not the other, risk of future fertility/contraception

I could have had this done at 24.5 and now I'm kicking myself that I should have gone earlier but I moved and never got any invitation from my GP that would kick me into thinking about it. I'm also kicking myself for past sexual activities when I was younger, and feel dirty, even though I know that so so many people can have it.

I'm just so worried that CIN3 isn't the end of it and it's going to have invaded further and that the treatment is going to be something radical (I'm trying to just think of it as taking it how it comes, but when I got told cervix looked fine, and then it came back bad, and then being told its mild, and then actually no its the worst of all the CINs, i just feel luck isn't on my side and things are being glossed over. isn't helped my me reading the news earlier in a clam moment and one of the first stories being a ~22 year old being diagnosed with cc.

 

Thanks for listening to me, just really needed to type it out and try and get my head straighter :)

The unknown is really scary isn't it, at least with having the Lletz all these unanswered questions will have answers. The waiting is the hardest part I had my lletz a week ago and been told I've got to wait 8 weeks for results  (going slightly insane already lol) Don't kick yourself too much it's one of those things so many people put off for much longer then you did just think you've done it now and it will all be sorted soon. it must be horrible hearing it's one thing then it being another try and keep yourself as busy as you can to keep your mind distracted (It's a lot to easier to say then do) Can you ask the doctor to give you something for before your lletz to calm your nerves? X x

Yes it is, my NHS trust seems quite good at doing things on time thankfully, but it seems scary because everything feels rushed and I don't know if thats because they are worried or because they are efficient. Seems like we've had similar things looking at your timeline and I'm a couple of weeks behind, it's reassuring to know of someone else this is happening to. i hadn't thought of asking for something to calm my nerves, i'm going through a private treatment centre that isn't attached to my GP, any ideas if it's my GP i should go see about this.

Weirdly I can say to you that I'm sure 8 weeks will pass by, i know i forgot about expecting results (of coloscopy) after a couple of days, and maybe why I'm so taken aback by the letter coming back so quick. I know I'm just feeling like every hour is an eternity (i ony got the letter yesterday eve so I havn't settled into (hopefully) forgetting it yet. Just feels so much more serious this time round. Wish I could act towards myself how i'd act to a friend telling me this- one step at a time etc.

:)

Maybe because you are going through private they are a bit quicker?? I again had to wait over 8 weeks for biopsy results I caved and rang my doctor he said the results had come through weeks ago and was waiting for the consultant to sign it I wasn't happy!!! when you're not expecting something to come back so quick I can imagine it's a shock as at that point it's almost at the back of your mind. I would speak to your gp about meds but make sure he gives you something that is ok to have with the local anestetic x x

Thanks for the quick replys! yeah its semi-private in conjunction with my nhs doctors practice so I am lucky I don't have such a wait.  Like you said they said i'd hear in 4 weeks but it came back as two so I'm so shocked and I know about the goverments objective of getting people with cancer seen in 2 weeks, so I've added 2+2 and got 5 and decided I've definitely got more than the CIN3 they've told me about.

Hi chick my result came back as mil hanged and high risk hpv, had a colposcopy within 2 weeks where they told me it was worse then mild, I was in again two weeks later for results, I haven't had a biopsy taken I have no idea had cin I am I'm just waitin for results, it's been 2 and half weeks since I had it dome and totally convinced it's cancer, I have so muchowed back pain had it years, seems it's wees now, constant heartburn and higher back pain, this could me just stressing it's a horrible time but we are now in he system and we are bein treated! Try not to worry about things please sweetheart! I'm 32 had all my smears and this is the first bad result xxx

Hiya,
 
I can really relate to how you're feeling - it's not a nice process at all and the waiting is just the worst. I've truly never found anything in my life as stressful as this. I've quit my 12 hour a day job in finance over this - it kicked me into realising my health (and happiness) is the most important thing and I don't need the added stress of a job that demands so much of me! 
I also have high risk HPV (full history listed below) and am awaiting the results of lletz. My smear has shown high risk HPV and moderate dyskaryosis but yet both my biopsies have shown 'inconclusive' results. It is really frustrating not knowing exactly what is wrong. 
 
In regards to what you said about sexual activity, I feel the same :( I haven't slept with many people but as I was on the pill at times I didn't always use a condom and now I'm kicking myself!! Not that it will change anything now. I've been with the same guy for over 4 years and I had a clear smear last year but my gyno explained that HPV can flare up at anytime.. Unfortunately. I don't think we should be hard on ourselves because you can sleep with someone once and get HPV, in fact I believe that I read you can get it just from sexual touching so not even necessarily sex, and it's something that a lot of people have - it's just the 'high risk' strains (such as 16 which I have) that cause the majority of CC cases. 
 
I have private healthcare so my waits are 2 weeks each time between procedures and results too. I'm struggling with the 2 week wait so I don't know how anyone copes with longer :( Today is the first day I haven't cried (exactly a week since my lletz treatment) - although it's only lunchtime so that could change!! I am such an emotional wreck, the other night I was sat in the bathroom crying uncontrollably, totally convinced I have CC. Like my mum keeps saying to me, this is all precautionary and the chances of being diagnosed are slim, so I keep trying to remind myself of this. (Easier said than done..!)
 
Hope all goes well for you X
Aug 2013 - turned 25, clear smear result
Jan 2015 - smear taken as part of routine 'full body' health check-up - results show HPV 16 high risk, and CIN 1 confirmed
Jan 2015 - colposcopy, CIN 2 confirmed, biopsy taken - results inconclusive, return in 6 months for another colposcopy
July 2015 - 6 mth repeat colposcopy - abnormal cells seen, biopsy taken, and smear
July 2015 - smear results show HPV 16 moderate changes, biopsy result inconclusive (again) - lletz carried out. 
Awaiting results, due in 2 weeks

Hey there, glad you've found Jo's :). I'm sorry you're having a tough time, the waiting and the not knowing is so scary. Try not to panic about what you don't know, if the doctors already thought it was something more sinister they would have said and CIN3 is 100% treatable. My doctor told me it takes 6-8 years for abnormal cells to develop into early cancer (which again is highly treatable with a similar procedure to what you're having), and less than 1% of women who have an abnormal smear find it's already developed. So the odds are hugely in your favour :). If you find yourself worrying give the hospital a ring, in my experience they are always happy to have a chat and reassure you. I've also spoken to my GP over the phone when i didn't understand my results which helped a lot. It's completely normal to worry, but try to take it a step at a time and not let your mind wonder too far off course. All the best and keep posting on here :) xxx

Hey guys, just a message to say thanks for all the replies. Feel a bit calmer a few days later, mostly because I've banned myself from googling! Week and a hlaf count-down to the LLetz, and still so many more for results. I'll keep popping back and hopefully help others with their thoughts like you've helped with mine, and hopfully to give you some good news in the million weeks from now when I get results. Jojo we have our procedures on the same day it seems, so I'll be thinking of you (well not too intimately haha)! :)

Ahh, that sort of makes me feel a little less scared in a strange way. I'll be thinking of you too :).

Hellooo. Hope you're feeling OK today. How did you get on yesterday?xxx 

Heyy! Soo much better than last time (not half as freaked out) the consultant took way more time with me answering all the questionss I didn't think to ask last time (write them down!). For those worried about the LLETZ (do ask if theres anything you want to know- I asked lots of weird questions that come across odd, but I wondered!) - Got really numb during the procedure (face/arms), and cried, but more out of reaction to my adrenalin (don't have a good history of responding well to it!) but the whole thing wasn't painful- apart from a few internal tugs, didn't feel local injection etc.

Even got to have my coil put back in at the same appointment, (so don't have to arrange yet another appointment- the thing I got most upset about at the biopsy seemingly hah) I'm hoping this is a good sign that nothing else too bad was seen. 2-4 weeks for results, my trust is pretty good about getting results back quick so im hopfuly for 2 weeks (if good news ha!). Next to no bleeding since, and had a day free of pain (evening after (last night) I had a bit of a grumpy stomach).

Great to see yours went well too Jojo! Not au-fait with what your surgeon mght have seen but sounds like youre through the worst of it?! We did great!!! Xxx

So glad it went OK for you :). Yes surgeon sounds very positive which is reassuring so worst case scenario is more surgery which is fine, I'm preparing for that to be the case and then if it's not it's just a bonus. I feel like I've dodged a very big bullet! Still have my moments though as I'm sure everyone does. Good luck with results hope they don't take too long xxx