Smear test result received - really worried

[Coconutty2]

Please, anyone, I have just received my smear result and it has come back as 'high grade (Severe dyskaryosis). They will send me an appt for a coloscopy in post.

I know this doesn't mean it's definitely cancer but my fear is that after 6 years I finally had the implant removed in September 2016. I was bleeding right from the beginning with the implants, I saw the Drs twice and they gave me norithisterone to stop the bleeding, which it did pretty much within couple days but then erratic bleeding would start again.

I also tried twice for a smear and each time I bled so the nurse said no point sending those off. I'm really scared as I feel all this time the constant bleeding, I'd blamed on the implant. This time I'd changed doctors practice and the nurse did the smear and there was abit of bleeding. I told her about my erratic bleeding and she said it looked like I had cervical ectropian. My bleeding has settled down since about March, so I thought my body had 'hormonally' gone back to normal and then now this. Please give me reassurance. I've not told anybody yet. I'm too upset.

I'm really sorry to hear your news coconutty. I don't really have any useful advice/insight to add but I just wanted to send some your way.

Did they indicate how long you would have to wait for your tests?

Thanks for replying Tartle. The letter just says the colonoscopy clinic will post me an appointment. I am so upset, particularly as it says it's 'high grade.

Try not to worry. Have a look here:
www.nhs.uk/Conditions/Cervical-screening-test/Pages/Results.aspx

It specifically says:
If your result is high-grade dyskaryosis, your sample won't be tested for HPV, but you'll be offered colposcopy (an examination of the cervix) to check the changes in your cervical cells.
All these results show you have abnormal cell changes. This doesn't mean you have cancer or will get cancer. It just means that some of your cells are abnormal, and if they're not treated they may develop into cervical cancer.

Think positively - they have identified some abnormal cells and they can now be treated, if necessary.

I had some abnormalities when I was in my 20s - had dodgy cells lasered off and haven't had any problems since (30 years!)

Don't panic until you have more information. These letters from the clinic can be overly cold and scaremongering sometimes I find.
x

Thank u for the link and reply Jng1.

I had exactly the same OP - CIN 3.

I had to have the loop dyathermy treatment twice, which was uncomfortable but not awful. I recommend a few diazepam in addition to the local they give you.

6 years on I'm 4 years clear and smears are normal.

Fingers crossed for you

Thanks for the tip Reow, I'm going to try and get an appt to see the doctor to discuss the letter and although my bleeding has settled in last 3 or so months, I'm going to ask if I should be given any norithisterone to take couple days before colposcopy in case I bleed and they can't do it.

I'm a real wimp with a low pain threshold and as they have struggled in past with my freakishly tilted uterus, it makes me even more scared of the procedure.

Honestly, the fear of the procedure in the weeks before was far far worse than the actual procedure itself!

I have anxiety issues and think I would have struggled with the whole thing without the diazepam on the day. It really takes the edge off the fear.

Hopefully it will all be ok

Thanks Reow, I will definitely ask doc about giving me some sedative, I'm calm at the moment but it helps to be able to come on here and talk. Can I ask if you remember how long you had to wait for your colposcopy and if they did the treatment there and then?

I used to work in colposcopy - we'd have on average four women a week with your grade so it's not unusual at all. You'll quite possibly have a treatment when you go to the hospital for the colposcopy - the edges of the tissue removed will be checked for abnormal cells and if clear it'll all be dealt with as quickly as that (there will be follow up just to double check all is ok). I hope this reassures you a bit!

With regards to the norethisterone that sounds like a good idea for you. If you are bleeding the doctor can't visualise where the abnormal cells are so treatment may have to be delayed. It shouldn't be painful but if you are worried take your usual painkiller 30 mins before the appt time (I'd take a co-codamol but I am a wimp).

I think current guidelines are 2 weeks from date of report to appt so it should come through quickly.

Thanks for all the replies. I'll definitely try see doc and I hope they'd jus do any treatment in same visit. I can handle any physical pain afterwards but problem is I'm a wuss during any type of treatment!

I had to go up first for a biopsy about 2 weeks after my letter. Think the biopsy was to see how deep they have to go. That wasn't really any worse than a smear, just a bit uncomfortable. Then I got a letter with an appointment date to go in about 1.5 weeks later.

Everyone on the day was so kind, a nurse was with me the whole time during the procedure and I asked her to tell me what was happening as it happened because I didn't want anything to surprise me or make me jump. They were all very kind. I think the treatment was about 25 mins in and out.

They used a camera to do the treatment and showed me exactly which areas they were treating. The cervix on screed looked like a cherry tomato and the speckled areas were the parts they were getting. I thought I'd be terrified and run out of the room (I have form for fainting and was freaking out about that just as much) but the diazepam made me nicely detached.

After it all happened and I got chatting to some friends I found out that 3 people I know had had the same thing! Seems it's way more common than you'd think.

There is a study from the 70s which just left abnormal cells to be monitored to see what they did (wouldn't be allowed with modern medical ethics so there is no more modern version). For high grade abnormal cells, iirc there was a 30% of cancer developing, if the woman was left completely untreated. I.e. There was a 70% chance that it would not progress beyond the stage you are at now. Those are pretty good odds. And your abnormal cells will now be treated and you will be closely monitored for a few years, so you are not even part of the 30% from the study. Please stop worrying about cancer. It is very, very unlikely.

I know it's scary but it's very common to have an abnormal smear (I've had a couple with mild and then moderate abnormalities myself) and the treatments are very effective now.

Thank you, I really appreciate the fact you've taken the time to respond to a stranger! I've just text my best friend and she's told me pretty much the same, that it's not uncommon to get an abnormal result and that I should just wait for my appt and see and that she would even go with me to any appt. Thanks everybody x

@Coconutty2 just wanted to add my experience to the existing posters: exactly the same as you CIN 3, when I was 21 - colposcopy, which didn't hurt at all: the most uncomfortable bit was the spectrum. They then took a couple of weeks deciding what to do because of my age (apparently it can sometimes rectify itself when you're in your early 20s) but decided to use a procedure called cold coagulation, which again, was uncomfortable but definitely didn't hurt.

Keep us posted, please!

Thank you Teachervoice and all the posters. I will update on here xx

I was in the same position about 4 years ago. CIN 3 followed by quick referral to colposcopy clinic. I had the loop treatment to remove the abnormal cells. I had a follow up smear 6 months later which was clear and was then put back on four yearly checks (although ended up having one after three years for various reasons) The first of these was 'normal'.

I was so worried at the time and did actually start a thread on here. Just thought I'd post my positive outcome as I know they helped me a bit at the time!

My colposcopy is on Monday. I saw my Dr a few days ago, she has given me some diazepam and also Norithisterone. My last period was about 10 days ago and I've not had any bleeding since, so I won't be taking it. My periods started being regular about a month before my smear after 6 1/2 years of very erratic bleeding. I asked Dr date of my previous smear and she said she didn't have any info on that as only my paper records had come through. I'd moved to a different town and registered with this doctors only 6 months ago.