High grade 2.5 years after lletz

Hi Ladies, 

I'm new here and going out of my mind with worry. I'm just looking for any similar stories to mine. 

In August 2011 I had a smear that came back as 'moderate dyskaryosis'. I had a lletz performed and have had clear smears since. My last smear was a little over a year ago and it was clear. I had one last week and was shocked that it came back as 'high grade'. I had swabs done at the same time as my smear and it came back I have thrush and I also have a telephone appointment to discuss other results. Could this be related to my smear results or could it be something else? Could thrush or infection be confused as dyskaryosis? 

The doctor that performed my smear mentioned that she noticed my cervix has 'ectropion'. I had no idea what this meant but after coming home and googling it, I found a statement that it is 'hard to distinguish ectropion from cervical cancer'. This terrified me. 

I had a mirena coil inserted last May. I have never had thrush before this, and I have had it twice since I had it put in. And now this. Could it all be related? I also had bleeding after sex with my ex but I just put that down to the coil but now I'm panicking it's cancer. 

Has anyone had dyskaryosis come back after having a lletz performed? Has anyone been diagnosed with cancer a year after a clear smear result? If it is cancer, could it have spread to other parts of my body within a year? 

Sorry for all the questions, I'm sure you all understand though! 

Thanks for reading xx

Hi

I have recently posted that I am going for my 2nd colposcopy on Friday.

I too had the mirena coil. My first was removed after 2.5 years as I had to have LLETZ. I had never had an abnormal smear result before. 2 years after having mirena I started bleeding after sex and would have period like cramps for hours (sometimes all the next day) afterwards. I have numerous std and other tests done all with negative results, until I had my smear.

Once my cervix had settled after lletz (2011) I had a new mirena. Again 2 years later I've been getting the same symptoms. I've been to gyne who asked whether I thought my coil could be the issue (my doc always told me it wasn't). I did a lot of research after my appointment and had it removed 4 days later. The side effects are considerable, and I had other symptoms I hadn't even considered could be linked to my coil! I would strongly advise you to research mirena side effects. There are lots of women struggling with recurring UTI's, weight gain, depression, anxiety, heart palpitations, low sex drive, etc etc. Although I can't speak for everyone and I'm sure there are many causes, what I do know is that 2 weeks after removal I feel better than I have done in 5 years! I'm not bloated anymore, I don't leak when I cough or jump, and I genuinely had no idea how unhappy I was before. I'm like a whole new person and I love it. I'm much less anxious about Friday's appointment too, when before I got tied up in knots over it. Mirena didn't work for me, but I will be very interested to see whether my abnormal cells are back and whether this has anything to do with mirena.

An ectropion is an erosion, effectively a cut that, because of the moisture in that area can't scab over and heal, and is a common occurence in younger women. I had one from my late teens that didn't go until I had LLETZ. It's usually nothing to worry about, but you should ask them to explain more thoroughly when you get your call. Do you know when this will happen? Try writing down all your questions, even the ones that seem too silly to ask. If you don't ask you'll only worry more. Better to be over-informed and confident than confused and anxious in my opinion.

I hope everything works out for you. Please let us know how you get on.

Big hugs x

Thank you for your reply Fab.  I'm lying in bed on my phone and just came on and seen your comment. I'm really tired (haven't been sleeping too good!)  but wanted to quickly reply. After reading about your experience of the mirena (and also many others since having it put in), I am definitely wondering if it has something to do with my abnormal smear. I have had a UTI and thrush twice since having it, and I've never had thrush before, never mind twice in under a year! 

I had the phone call with the doctor and all the other swabs came back fine (phew) and she just wanted to talk to me about the smear result and see if I had any questions really. I got my letter from the hospital and I'm there on the 9th. I'm trying to put it to the back of my mind but it's so hard! What helped me a lot though, was telling my boss I needed the day off work and mentioning why, only for her to tell me the same had happened to her and she was in for her colposcopy the next day. I also confided in a couple of colleagues, both of which had been through this too! It made me realise just how common this is. My Mum also had it done a few years ago too. 

I'm guessing my mirena will be removed if I need to have the lletz done, but I'm going to ask to have it removed anyway. I've read so many bad things since getting it and have wanted it out for so long (I didn't even want it, I was totally pressurised by my doctor into getting it), I just want the thing out! 

I hope everything goes OK for you tomorrow. Fingers crossed we both get good news. And that goes for everyone else going through the same thing! 

Good luck girls! 

X

Ps. Sorry for any typos, I'm too tired to go back and check! 

I've read specifically that it is not linked, but I did wonder whether that could be accurate. It's seems too coincidental to me but hey I'm not a medical professional.

It is surprising how many others go through this and you wouldn't even know. A lady I work with has just had a trachelectomy but she's back and fine now. It's put things in perspective for me.

I wish you luck for the 9th. Try and stay positive, hard as it is. At least they've picked it up again and they will take good care of you. They may not remove your coil if it isn't in the way, but by all means ask if that's what you want.

Take care xxx