Very severe changes - don't know what this means! New

Hello!

Wondering if anyone has been in my boat? I got a letter saying my routine smear had showed abnormalities after a routine smear (my first - I'm 25). When I arrived at my colposcopy appointment, the gyno consultant said, before she had even examined me, that the changes were severe, and at the highest end of severe possible. She also made a comment about them being so severe they were 'on the borderline' but didn't really explain what that means. From reading online this makes me think she meant CIN3. I had an LLETZ, where she removed 7mm of tissue. I was told that I have to wait for results once they send the tissue off to the lab. During the consultation the doctor said I was very lucky I came when I did as the changes were so severe, and that my friend who nagged me to book my smear 'saved my life'. During the appointment she said that I may have to have a second LLETZ depending on if they got all the abnormal cells.

When I called the doctor the next day just to clarify everything, I asked if this meant that I don't have cervical cancer. She said she didn't know, the changes were very very severe and I would need to wait (4 - 6 weeks!!) for the lab results to come back.

I am now really scared and worried as it feels now like I am waiting for cancer results?? Which isn't what the doctor said during the consultation. I thought cancer was something you either had or didn't have (ie the cells are either cancerous or not) but now I am not so sure?

Has anyone else been in the same boat? Not sure at all what is going on and obviously feeling v anxious.

any thoughts welcome!!

x

 

 

Hi there,

Sorry to hear you've had such a scare, you must have been so worried! I don't really know why the doctor was saying things like that, I feel that was very irresponsible and an over reaction. Their job is to keep you calm, not cause a panic! Whereas CIN3 can turn into cancer with time, it is still at a PRE-cancerous stage and therefore easily treated with LLETZ. As far as I'm aware, CIN is graded as CIN1, CIN2 and CIN3, which can often be referred to as follows:

CIN 1 = Mild changes

CIN2 = Moderate changes

CIN 3 = Severe changes

 

I have never, however, heard them being referred to as 'very' severe. They are either CIN or not, usually cannot be 100% graded until it's been tested at the lab. I think the doctor was a bit unprofessional to then go on to say your friend saved your life. Yes, I agree that your friend did you a huge favour by getting you to go for your smear and being able to be treated with LLETZ instead of you waiting longer, however the doctor is  being a little bit over dramatic. I'm surprised the doctor said things like this at your appointment, especially if she wasn't 100% sure it wasn't cancer (like she said on the phone).

If the doctor suspected cancer, they should have put the results through on a fast-track, which usually gets them returned within 2 weeks. I would be questioning this doctor's professionalism if I were you once you know where you are with your results. I hope all is ok and I'm wishing you all the very best for your results.

Lucy x

 

Hi Lucy - thank you so much for your message, it has really reassured me! As has seeing that you have gone through a similar thing and seem to be ok!

I got the impression that the doctor was trying to prepare me for the worst? Not sure. I'm going to call and speak to her again next week - as you say, I think it is reasonable to ask why results are not being fast tracked if she does think CC is a realistic risk! 

I guess maybe she meant it was a large area of CIN3? She did say on the phone and at the appt that 'hopefully they have got it all' - so that is sort of reassuring I guess, that they think it looked possible to get it all? Oh I don't know, you could second guess forever until the results come through! 

On a different note, I had my LLETZ on Tuesday and today (Sat) and yesterday I have been quite sore, especially my lower back. Is this normal? It feels like the sort of a back pain I had when I got a period (haven't had one in years as I've been on the mini pill - maybe that is why I have found having this watery discharge so traumatic!)

Anyway thanks for replying, you have made me feel better 

 

xxx

 

 

 

 

 

 

Hi Annie,

Glad my reply helped - this is why the forum is so good :-) Yes I went through a similar thing - I've had LLETZ twice now, 6 years apart and both times they have got it all on the first go, I didn't have to go back again. The results will determine whether or not they got clear margins, or whether you'd have to go back in for a bit more. It's no problem if you do have to go back - it's just to 'tidy up' from last time, doesn't mean anything sinister.

If the doctor suspected CC, she would have put it through as an urgent referral I feel sure, so if I were you I'd take comfort for the fact that it's not gone through as urgent :-) Even though I know the wait will be hard, just try to keep youself busy to take your  mind off things and stay away from Google!

Tummy ache and lower back ache is perfectly normal for up to a few weeks after LLETZ, the frustrating thing I found I craved a bath but you're not allowed one! Heat patches were very effective, along with ibuprofen. Just make sure you rest as it can take a few weeks to heal, no exercise for at least 3 weeks, even if you do start to feel better as you may still be healing inside.

If you start getting bad discharge or a smell though, please go to the GP as you may have an infection. I got an infection both times and they just send you home with some antibiotics which clear it all up within 5 days.

Stay rested and keep us updated on your results,

Lucy xx

I am due to have my lletz under general on 29th was told

It was Cin3 but they would check for areas of concern.

I am a bit of a wimp with period pain i had a laparoscopy in 2010

And period pain was agony after as had coil put in to 

So hoping it won't be that bad

 

thanks Lucy - I think you are probably right!! And yes, a million times yes, I would love a bath.

Kittykat I am like you. I hadn't had a period in years as I was on the pill and I am such a pain wimp. Hot water bottle really helped and also not doing too much. I did too much (carrying a suitcase, couldn't be helped) and I feel like it set me back a few days.

Sending you hugs and virtual cups of tea! Let us know how you get on xxxx

I have my large loop on Wednesday I waited 2 weeks for my referral, had that then went was told it was a large area but she did put down CIN3.  Had it fond on Wednesday went well bug am still being sent for mri as the consultant did say all went well but he thinks its the C so thats why am being sent for mri. Its a waiting ggame just glad I have regular smear tests. 

 

1994-2012 smears all clear

2015 servere dyfkaryosis

 

No symptoms anyone else the same as me xx

I'm reading this after my first Lletz treatment earlier today. I don't feel too bad, just cramping like bad period pain and quite emotional. I hope you guys are feeling okay. I agree that the doctor was a little unprofessional, I would have been freaking out. I do have a few questions if anyone could help me -

 Firstly, no one mentioned not having a bath?? Been looking forward to a nice hot bath this evening so I guess that's out now. I was given a little leaflet but didn't mention baths or exercise. Also didn't expect no sex for 4 weeks (although thats the last thing on my mind atm!)

How did you find out about the CIN grade? My letter said I had high grade dyskaryosis then today was told I had moderate - Severe cells so does that mean it's CIN?

I am so nervous coming up to weds now. Pre op Monday and op weds.

Needles are not my thing. Defo want them to play music whilst they are putting needle in

To send me to sleep lol. Hopefully won't hurt to much after x 

Finally done now after general very hot and dizzy and felt very sick after anaesthetic.

Cin2 was diagnosed but she was unsure of some areas

So has sent to lab and treated anyway due to painful examinations.

New mirena inserted to now just bleeding what i can only explain as coffee colour. Gross