I'm not quite sure where to start as my head is in such a whirl.
I'd really appreciate talking to someone that has been/is in a similar boat to me because, as lovely as my friends and fam are being, I'd like to talk to someone who understands. Also don't want to let on to my friends/fam that actually, I'm terrified.
I'm 24 and recently had my first smear, got the results yesterday to say I have "high grade abnormal cells". It was a huge shock, a burst into tears as soon as I read it. Today I got the next letter to say my colposcopy is booked for 31st March, although the lovely nurse said she would call me if there are any cancellations.
I just want people to stop tip toeing and tell me the truth - does this mean I could have cancer? I know abnormal smears are quite common, however it's the "high grade" bit that is scaring me senseless.
I have for a few years suffered with cramps on and off at all times of the month and recently have had a constant upset tummy. I dismissed it before now, but now can't help my mind going into overdrive and worrying if it is related.
Please, had anyone had the same result and can you share your experience? Can you tell me what the colposcopy / laser / LLETZ is like?
I like to know all about things so I can be prepared.
I couldn't sleep properly last night and ended up leaving work early as my head is just all over the place, I feel numb, I think I'm in shock? But also feel like im being really over dramatic and am a bit embarrassed at my reaction.
Hi I was in the same boat as you a few weeks ago got told I had high grade cin3 went to colospocy few weeks ago the nurses were really nice and calmed me down she was going to do a loop on me but never because area was to big and she said it looked suspicouse cc so she took 3 biopsys and rushed them throu I got a phone call 2 weeks later saying I have squontous cell cininoma cin3 she told me she thinks it's early stages but I just keep thinking the worst I have an app on 23 march for intunal and waiting for MRI scan to stage it I am scared to be truthfully cin3 is pre cancerous cell not cancer thay say it takes years to develop please don't stress yourself out you have done a good thing going for your smear you will get the help you need and stay away from dr google as everyone on here says Jo's is the best place for advice and support and has helped me a lot x
Unfortunately I cannot answer your question.. But I did find out today that I have cells which are high grade dyskaryosis too.
I am also anxious to get answers on what this means, and what is in store for me for the future (tests etc). I think the letter they send out is really cruel. They tell you you have high grade dyskaryosis cells without even explaining what they are.... or what this means. Which sends people (me especially) into panick.
So if anyone can help with this I think we would be enternally grateful !!
Thank you ladies for your kind responses! I am really sorry to hear you are in the same worrying situation as me. Although it's nice (if you know what I mean) to talk to people that understand.
There are 3 stages of abnormal cells. Stage 1 which are mild (CIN1). Stage 2 which are moderate (CIN2) and stage 3 which are severe (CIN3). These are PRE CANCEROUS cells NOT cancer. Stage 1 they tens to take a wait and watch approach as they are sometimes able to return to normal by themselves. Stage 2 and 3 they tend to treat. At colposcopy they will take a closer look at your cervix with a magnifying glass (very similar to a smear test but with a magnifying glass, which does not go inside you). They will then apply some solution to your cervix along with a dye. Any abnormal areas will show up white. Depending on the hospital, they will either take a few punch biopsies which do not hurt, just a bit crampy, or they will offer you treatment there and then. They will perform a LLETZ which will remove the abnormal area. This will be done under local anaesthetic.
The nurses will be lovely and there will be an extra one to hold your hand and take your mind off things!
I received my severe smear back in 2006. I remember to this day how scary it is. I up until recently had smears constantly as didn't have a clear result. I had 2 rounds of treatment. I have just last month received my second clear in a row.
I know how scary it is but I just wanted to say the anticipation is much, much worse than what is about to come. Hopefully once your appointment is done you will be back on here saying I can't believe I was so nervous! The waiting is really really hard but you will get through it. We are all here to answer any questions you may have.
if I had cancerous cells, would the letter have said this? Or do they not know until they do a closer look? I am just scared that the "high grade" abnormalities will turn out to be cancer x
Hi! I was in exactly your position 2 months ago. I had my first smear and it was high grade dyskariosis. I spent 2 weeks convinced I was dying, and googling colposcopy footage (don't do this!). I've had two colposcopys and a lletz now and hopefully I'll soon be able to put this behind me. Please remember that the chance of this being anything worse is SO small (I read around 1%). If you're at all worried I'd suggest talking to your gp. I spoke to mine in between my two colps and she was great, she told me how common it was and that something like 1 in 4 women will get an abnormal result at some point.. We were just unlucky! (or lucky depending on how you look at it!).
The actual colposcopy and treatment really isn't bad. It's just like a slightly longer, slightly more surreal smear. Nothing I've had done caused me any more pain than a quick pinch, despite me reading horror stories that women said it hurt more than childbirth (really?!). The waiting and anticipation of pain is the worst part but generally the nurses are prepared for this and will hold your hand (even if you do end up almost crushing their fingers... Maybe just me? Haha). They will be able to give you a lot more information and support and I'm sure when they've had a look they will be able to put your mind at rest. You're in a great position that now you're in the system the chance of you getting cc is very small as you'll always know how important it is to get regular smears.
Hopefully in a months time you will be able to look back and wonder what all the fuss was about!
Another concern of mine is that if my high grade cells are cancerous and I need treatment, would I definitely become infertile. I know that seems super extreme - but it’s a big worry of mine!
If in the very unlikely event you DID have cancerous cells, then the chances are they'd have been caught early enough to treat either with a lletz or cone biopsy. If it was a bit further on, there is a possible procedure called a radical trachylectomy (possibly misspelled that!) which is an alternative to a hysterectomy and preserves fertility. Honestly though, it's not worth worrying about at this stage. Getting high grade dyskariosis doesn't mean you have cancer, or will even get cancer.
Sorry you got the dreaded letter. I was in bits too but I have had quite a few smears over the years and 2 children. I really feel for you getting called up on your first smear.
Firstly it is really unlikely to come back any worse than your smear result. It does happen, but very rarely.
The colpo team are used to doing this all day every day and have seen everything. You will most likely get a doctor at the business end (who you won't see as they cover you up) and 2 nurses, one of whom is there simply to hold your hand, talk to you and reassure you. If you feel able do take someone with you, even if you don't want them in the room (they wont see anything either...) it will help pass the waiting time and calm your nerves.
The worst part is genuinely waiting for results which can take several weeks. Have some nice things lined up afterwards, nice wine or chocs or something you enjoy as a little treat.
This is a bit crude but if they offer you treatment there and then you might want to take it so you are all better for your wedding and honeymoon. Otherwise you may have it hanging over your head until after your wedding. Treatment recovery (LLETZ) is usually 4-6 weeks and they say no sex, no swimming, no baths for that time. Make sure they are aware of your situation so you can make an informed choice if treatment is needed
I too had the letter of dread and I was petrified recvd the letter Fri and my appointment was Monday complete head mess over the weekend. Severe dyskaryosis or cin 3 is pre cancerous as the other ladies have said and If it was to go cancerous it takes years if left untreated... the Colposcopy I had yesterday was fine I had the acid wipe put in then iodine as well as they couldn't see any of the abnormalities however I still had the loop treatment it ever so slightly stung as they put the first injection in but that was it.... I had got myself into a state about the pain and I have 2 children but it really was no way near painful just uncomfortable... I wish you all well for the future. this is why we have smear tests... x.
Mia quick update - I had my colposcopy yesterday, the Dr confirmed high grade changes. They wanted me to come back for LLETZ but I begged them to do it there and then and luckily they obliged. I couldn't take more waiting!
It was all very uncomfortable but not painful. I was very scared and the nurses were wonderful. One held my hand and kept me talking the whole time.
Now I need to wait for my results, however the Dr said he is confident he got it all and that it will be a case of smear in 6 months :)
x
