High grade pre cancerous cells, I'm petrified. Please talk to me

[Midnightsbecomemyafternoons]

I've just had a call regarding my most recent smear, I have to go to have a biopsy etc next Thursday. High grade dyskaryosis.

I'm shaking. I have three small children, one is disabled and one just a baby.

Please, can you offer me some words of reassurance from personal experience or even anecdotally.

I have terrible health anxiety and this is my worst nightmare. I can't stop crying.

Posting here shamelessly for traffic.

To add to my last post, I came off my period yesterday after my usual end of period spotting brown blood. This was bright red new blood that came after an orgasm.

Sorry for the TMI. I couldn't possibly mention any of this to my RL friends 😩

I had this on my first smear after childbirth at age 35. Lletz procedure and some 6 monthly smears after. No problems since and am 45 now. You will be fine

Thank you. I'm glad it was all OK for you ❤️

Did you happen to have any unusual bleeding at any point?

I think CIN 2-3 can cause bleeding can't it?

Good luck today. I hope it sets your mind at rest.

I had a tiny bit of bleeding after sex at one point, years before my CIN III, and the nurse doing my smear at the time said it was probably a little bit of cervical erosion and was very common.

Thank you ❤️

I'll raise it with them later today and ask if they can see any erosions during the colposcopy.

I'm v nervous but hopefully will be less so after the appointment.

So I've been seen.

That was the worst medical experience I've ever had with regards to how it was handled.

I was quite scared going in so apologised in advance for that and explained about my PTSD (from historical rape and recent-ish birth trauma, so very relevant in this department)

The consultant familiarised himself with my case, he said we are going to be doing a biopsy today.

I asked if, like he told me last week, he would be able to remove some of the bad cells today. He hummed and ahh'd and said probably and that we will see.

I started crying at this point. Not hysterically but visible tears.

The nurse who was in the room then turned to my other half (who was with me for support and hadn't uttered a word) and said "we'll just get some information before we start" and ushered him out of the room.

I thought they wanted to go over some more questions with me but nope, I'm rushed to get undressed and get on the bed/seat.

I asked could he please come back in and stay with me and was told "maybe afterwards"

Speculum went in, did a visual examination.

Vinegar-y solution goes on.

Then out of nowhere with no warning they did something really painful. I couldn't tell you whether it was an anesthetic injection or them taking the biopsy as I wasn't being talked through anything as it happened other than the solution bit.

I'm sobbing at this point and want OH to come back in to hold my hand but they wouldn't let him.

The abnormal cells showed up with the liquid but the Consultant said he couldn't tell what grade they were.

He said i do need treatment but he wouldn't be removing them today. I have to wait for the results of the biopsy. He said he wants me to have the procedure done under general anesthetic as that'll be easier for everybody.

I asked how long approx till the results are back and they said a few weeks but if I don't hear anything within 6 weeks then call and chase it up.

The only thing that got me through the last 2 weeks is believing (and being told, at that) that I'd be having treatment today.

I can't do another 2+ weeks of this. I just can't 😭

Oh bless your heart - that sounds horrible. They should have told you before they did the anaesthetic/biopsy. I had to have a second appointment after my colposcopy to have the procedure done after they'd had results back, but they should have told you that was going to be the case so you knew the score beforehand. So sorry. On the plus side, I'm pretty sure they wouldn't have said you'd hear 'in a few weeks' if they'd seen anything that needed urgent treatment.

That sounds absolutely atrocious.

I would have thought that if a biopsy was done though there would always be the possibility of having to wait for results.

Does the thought of treatment under a GA make things better or worse for you?

Thank you both for validating how I feel.

I hate the thought of being a difficult patient and try my best not to be, I just can't help being scared. That's the nature of PTSD isn't it?

I'm not a bad patient in the sense of being obstructive, argumentative, difficult to assess etc. I remained perfectly still for the procedure. I'm agreeable. I do as they ask. I was just scared (and then in pain from whatever on earth they shoved up my foof with no warning)

I'm not happy about being put to sleep if I'm honest. It wasn't posed as a request though, more so that's how it's going to be done and that's that.

I didn't take the diazepam my GP prescribed me today as I thought I'd be OK (and I feel I would have been if they'd been a bit more empathetic towards me)

Can I refuse the GA and assure them that I'll take the sedative tablet next time?

I'm not sure I'm buying the fact he couldn't tell what grade the cells were. You don't get to his level of expertise not being able to differentiate CIN1 from CIN3 do you? I think he just didn't want to tell me and have me probe more etc.

He did say (before the liquid) went on that my cervix looked healthy and he couldn't see any 'polyps?' so doesn't think I'm suffering from any invasive cancer right now.

With regards to the waiting for the biopsy, he was prepared to treat whatever he would have found last week on the day without needing to wait for the results, only he couldn't because my period came.

He's changed his mind about being happy to treat on the day, today, because of my nerves and being tearful.

I wish I could have just kept a sock in it and soldiered on without saying anything 😕

Perhaps he thought that you might not have tolerated it today?

That said you probably could have done if your husband had been allowed to stay.

Did your partner have to leave because of covid regs?

That sounds really sneaky the way they took him out.

That's possible diddl, although I did stress to him how important it was for me to just have the cells off and be done with it. I said I haven't coped well with these past two weeks and just need it to be over and done with. I explained that I'm not sleeping and just in a continuous state of stress.

I would have 100% been calmer if they let him stay in with me.

We also agree it's sneaky how they did it. I can only conclude that they had the conversation in advance of today as they had no problem letting him stay last time. He didn't say a word so was no bother at all.

No idea if it was due to covid regs. They didn't explain anything to me about anything. Just a really crap appointment all in all.

I do think some consultants get so blase about what they do & just don't consider the impact on the patients.

I had some high liver readings a bit ago.

And the consultant is "oh well we'll just do a biopsy".

If I tell you that I was crying on the way to my first covid injection...

Gosh you poor thing, today sounds really poorly handled, not very sympathetic at all. The painful part sounds like a punch biopsy, which would be uncomfortable / painful, but they should have talked you through what was happening and been kinder.

I had CIN 2/3 when I was 23. They removed it via a LLETZ and I have gone on to have normal smears and two pregnancies since then - 15 years ago. I didn't have the treatment at the same time as the biopsy and was under local for the lletz.

I would complain about how today was handled and request a different consultant if possible. Big hugs to you, you've been through alot and do not need unsympathetic medical staff making it worse

It means alot that people can see my POV and agree it was handled badly, thank you. I was really kicking myself on the way home and blaming myself for crying.

I'm pissed off about his supposed inability to determine what grade the cells are. OK he can't be as definitive as the lab processing the biopsy but he can give an educated guess.

I don't feel any of this today was for my benefit, only their convenience. Patient too emotional = get them out quickly and be vague about any findings so as not to be drawn into a conversation about it.

There was no debrief after the procedure either. No 2 minutes to sit down with the consultant and talk about next steps. Just left me to get dressed then gave me a leaflet and waved me off out the room.

A friend of mine had this 36 years ago and is Ok. She had a child after the treatment too. So try not to worry.

Don't you dare blame yourself!! It was handled really, really badly, at the very time when you really needed care and sensitivity. It's traumatic enough having a stranger ferreting around up there anyway, let alone after past trauma. You're not a robot and they should have been kinder

My best mate had the same with tbh her first ever smear. She had to have surgery but has been clear for 4 years now of anything nefarious. She was completely fine after having a little bit of cervix removed and is living her best life!

You've all been very kind, thank you.

It's funny how we're told not to Google or read online as this thread has given me more hope than my two visits to the hospital combined ❤️

I'm not happy about being put to sleep if I'm honest. It wasn't posed as a request though, more so that's how it's going to be done and that's that.

I don’t think you do have to have a general anaesthetic. Someone I know who was recently treated for cancer of the bladder, asked for and was given a spinal anaesthetic. This was an injection in the spine and a small amount of the other sort of anaesthetic. Or, if suitable you could ask for the sedative you mentioned, but perhaps it wouldn’t be suitable if it were going to be too painful (?).

That's really interesting, I didn't know spinal could be an option for this. I will ask about it.

I had a spinal last year (elective cesarean) and was awake throughout. I coped just fine with that major surgery dispite my previous birth trauma and subsequent PTSD diagnosis.

The reason I coped so well was because I had my other half there for support aswell as an understanding/patient surgeon and other compassionate HCP's around me who talked me through everything.

The difference is in the care isn't it. It's not me being a bad patient, they just couldn't be bothered accommodating my MH today.

This was not quite the same as that in that there was also some other anaesthetic given, but overall it was much lighter. You could ask about it. It would be a discussion with your anaesthetist.

Lighter than ‘general anaesthetic’.

I'll definitely do that, thank you!

I can't believe how much this hurt. It was nothing like I've seen people describe it to be IE just a bit uncomfortable.

I've birthed two back to back babies with nothing but gas and air, had a cesarean and got by on just paracetamol afterwards etc etc.. I have a reasonable threshold for pain. What I felt today certainly didn't feel like a cervix that had been numbed.

Do they ever do biopsies without numbing you?