Colposcopy results awaiting MDT

Hi everyone,

I was wondering if anyone has had a similar experience to me and/or has any advice

So I had my smear 4 months ago, it took 9 weeks for my results to came back and they came back as low grade dyskaryosis so I was sent for a colposcopy and was biopsied 4 weeks ago.
Was told it would be a 3-4 week wait for results and had still heard nothing so called them. Apparently someone had forgotten to sign off the letter so good job I called!!
The nurse I spoke to said that my biopsy has come back with CIN2 but it’s what they call a focal area so is really small so they’re having to take it to MDT on 4th august to decide whether to recommend a LLETZ or not.

She said they’re going to look at my smear again to see if they still think that’s low grade or if it actually looks more high grade. If it looks more high grade they’re likely to recommend LLETZ
If it’s low grade she said, and I quote, “you’re young, don’t smoke and haven’t had kids yet so we don’t want to take a part of your cervix out unless it’s 100% necessary so we would wait 6 months and refer you back for a colposcopy in 6 months”

I’m a little bit annoyed about this as how do they know whether I want kids or not? As a matter of fact I’m not actually sure I do, I haven’t made up my mind.
I also found the colposcopy extremely distressing and the thought of having to have it every 6 months and then wait for the results for 3-4 weeks terrifies me.

Has anyone had a similar experience? Do they take your view/opinion into consideration?

Obviously I’d rather not have a LLETZ but I’m also not sure I want to leave the cells alone to do their thing either

I’m a childless non smoker who had CIN2 in a focal spot in my cervix :wave:t2: My case didn’t go to MDT though, after the initial colposcopy appointment where the nurse took a biopsy, I was called in for cold coagulation.

Watch and wait was never offered to me. There’s a lot online about some women being able to reverse their changes with mega healthy diets and going hard on the vitamins. In hindsight, I think I’d of still had the cold coag’ rather than active surveillance. I feel lucky to have had that rather than LLETZ, the recovery time seems better.

I’m completing a healthcare degree too atm. They should 100% take your view into consideration. If they don’t feel treatment is necessary though, you’ll have to explain clearly why you want it i.e not having treatment would severely impact your mental health. They have a duty to consider your quality of life and emotional well-being as well as your physical health.

You should certainly tell them your preference if you want to have treatment. I expect they’ll take it into account (not that they’re guaranteed to do what you want). When I went for my first appointment they were only going to take biopsies despite my smear results being high grade severe dyskariosis but I said I wanted the lletz done and not have to wait, so they did it on the day.

I wouldn’t take offence at the comments about having kids. Like any procedure there are certain risks and they will seek to minimise those. They do have to be careful with anything that impacts fertility or ability to carry to term. People do change their minds about having children and they aren’t going to discount the possibility even if you tell them you don’t want kids. I’m not trying to be patronising here, as I’m 100% child free myself and I hate when people say “ooooh you might change your mind one day”, but some people do and that’s all they’re trying to take into consideration.

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Hi Eshaw,

I hope all is well with you whilst you are waiting for all of this. The waiting is the worst part. Today is 5 weeks since my biopsy and I still don’t have my results (I didn’t have LLETZ) and I have been ringing the hospital and they said last week that they received my results but they need to wait for the colposcopist to check the results before the letter is sent out?? Really annoying because they literally have them and I’m waiting on someone to “check” but I don’t really understand and they can’t tell me over the phone. I’m confused because my smear said moderate dyskariosis but my colposcopist said it looks more like CIN1 or 2. All very unsure right now. It was my first smear ever and I’m only 25!

I’m glad your MDT isn’t too far away next week and wishing you all the best.

Hi Korkey,

Thank you for replying! Interesting to hear you were the same as me and they treated you…
I will definitely be speaking to them if they decide to watch and wait as I’m really not sure that’s something that I’m comfortable with

Hi Tara,

It really is the worst!!
Poor you :frowning: I think I was really lucky that I got a lovely receptionist who could tell I was really anxious and she got the colposcopist to ring me back almost straight away!
I’m 26 and it was my first smear too so I know exactly how you feel

Hi

I’m going through the same. High risk HPV and low grade dykariosis in April colposcopy in June - consultant said it was very minor and seemed confident I wouldn’t need treatment. Got a letter three weeks later saying the biopsy results were in but they needed to discuss them at MDT in two weeks time. No explanation to why. I called and spoke to the nurse who said they can’t give biopsy results over the phone but not to worry. MDT was 13th July and still not heard anything. The not knowing and waiting is torture! I’m presuming the biopsy showed something different to my smear. I’m assuming higher grade as it was low grade on smear? But all the guessing is driving me crazy I haven’t been able to stop thinking about all this for months….

Oh bless you!! It’s absolutely awful isn’t it :frowning: I’ve waited so long at every stage and it’s just horrific the anxiety it causes.
I had exactly the same thing, I was told I probably wouldn’t need treatment which is such an unfair thing to say because now it seems like I will need treatment.
That’s weird that they couldn’t give you your biopsy results over the phone as they gave me mine over the phone! It must be horrific not knowing and having all the worry :frowning:
Try and focus on the fact the nurse said not to worry as that’s what they said to me too.
How old are you and do you have kids if you don’t mind me asking?
It sounds like your situation is very similar, if not identical, to mine.
Can’t believe you’ve been waiting since the 13th July though, that’s such a long time :confused:
Have you tried calling and asking what the results of the MDT were?

Yes absolutely it sounds like we are in the same situation exactly apart from I don’t know why mine have gone to MDT but I can only assume it’s higher grade than they thought! I know I can’t believe she wouldn’t tell me either, everyone else who’s been I certain seems to have been told over the phone but she just said “sorry we don’t give biopsy results over the phone” so that made me worry even more! She did say it’s when there’s a discrepancy between the smear and the biopsy when I pushed her but that was all. And not to worry which of course is easier said than done. I’d rather them have not told me it was going to MDT at all of they can’t tell me why! So I had my biopsy on 7th June, MDT was 13th July I called last Friday and the secretary said the consultant will be back on the 29th then he’ll write to me… I said I’m worried it’s been so long if I need treatment etc and all she said was “oh bless” really helpful! Thanks!

I know exactly what you mean re the consult not saying “you won’t need treatment “ as it reassures you then You worry more when something changes. I’m 35 I have two boys and I’m not planning on having any more children so I guess fertility isn’t really a factor for me. It’s just the worry of not knowing and imaging all kinds of worse case scenarios…. So your MDT is this week? I hope they don’t leave you waiting as long as me afterwards x

Yeah that is weird, I wondered if you didn’t have kids if it would be the same as me where they don’t want to do treatment. But fingers crossed it’s the same as me where it’s such a small area that they don’t want to do surgery unless it’s really necessary.
Yeah they said that about me too about the discrepancy, I got told that they would be reassessing my smear at the MDT to see if it was misgraded as low grade so maybe that’s what’s happening with you too?
Urg that’s so unhelpful, I’m so sorry that they’ve done that to you, it’s so unfair :confused:
Yeah exactly
Oh bless you :frowning: it’s just so awful all the worrying
I hate that they write rather than calling or emailing cos it just takes so much longer to get the results
You’ll have to let me know when you find out and what they say
Yeah my MDT is tomorrow so who knows when I’ll find out, I’m tempted to ring them and ask them to tell me over the phone x

Yeah I know what you mean I thought maybe I’d that was the case given my age and I’ve had kids they would just treat me. But yeah she said that to me too that they’d be relooking at my smear but just why! I think I’d feel so much better if I knew why instead of guessing! I thought about phoning but I assumed they wouldn’t tell me as they didn’t tell me why it was going to MDT. The nurse just said wait for the letter and call us if you have any worries or questions. I agree I wish they’d call or email waiting for a letter is awful especially as I’m at work and every evening I’m anxious wandering if it’s arrived. They told me a week or 10 days to find out after the MDT initially so you should know next week. I think my consultant was off hence the further delay. I just want to have treatment if I need it and stop waiting. Yes I’ll let you know when I eventually find out…. X

Definitely, it’s awful that they’ve kept you waiting so long :frowning:
It’s so annoying and nerve wracking waiting for the post
Hopefully I find out next week but who knows since everything seems to be taking forever atm
Yeah I really understand that
Any time you want to chat about it, just let me know as I 100% understand what you’re going through x

Thanks I really appreciate it it’s really nice to talk to someone who’s going thru the exact same thing! Also same offer applies to you - happy to chat any time a problem shared is a problem halved :slight_smile: Still no letter…. Xx

I totally agree :slight_smile:
Aww thank you!
Oh poor you :frowning: x

Hi!

Finally an update! So the biopsy showed cin2 so I have an appointment Wednesday to discuss and apparently I can decide if I have LLETZ or conservative management. Have you heard anything? X

Oh bless you! So pleased you’ve finally got an answer!! How’re you feeling about it all? Have you thought about what you’re going to do yet?
Nope, still nothing :frowning: if I haven’t heard by Wednesday I’m going to call them x

I’m glad I know more but I had to call as I hadn’t got a letter but then it had come when I got back and it said cin2 with a possible cin3 focal area! The nurse didn’t say that on the phone so that freaked me out a bit and I wondered how they would even consider not treating if there is possible cin3! I’ll ask for clarification on Wednesday but I’m definitely getting the treatment I’d worry too much otherwise thinking it’s getting worse! Good idea re calling it’s not good all this chasing and waiting we have to do! Let me know how you get on xx

Oh bless you, I’m not surprised you’re freaking out! Yeah that makes sense, that’s my thoughts too
Let me know how Wednesday goes
I will do xx

So I’ve had yet another load of shit. I’m so fed up with everything.
Got an appointment letter through for an outpatient appointment on the 6th September but no other information.
Rang them and finally managed to get it out of the person on the phone that they want to do a loop excision.
Apparently the appointment letters and results letters are sent by different people so they often come at different times. How is this helpful though?!?! To have an appointment before the results is just not okay.
I said on the phone that I can’t have the appointment on the 6th as that’s my first day in a new job but they said they don’t recommend leaving it much later than then
I’ve also said I need it done under general not local because of my anxiety
Apparently someone will ring me back “at some point today” :cry::roll_eyes:
I’m just so fed up of it all
How did yesterday go? Xx

Hey lovely
Gosh I’m so sorry you are going thru this too!! I got my appointment before my results too so I know how frustrating it is :disappointed: I think maybe if you explain to your new manager you have an urgent hospital appointment they’ll be understanding? I’ve just started a new job too and my manager has been great fortunately. So I had the LLETZ yesterday the doctor explained the results showed cin2 and a very small area of possible cin3. He said cin2 has a 50% chance of returning to normal and cin3 has a 30% chance. I said I wanted treatment and he said he agrees it’s the best thing to do. The procedure wasn’t great tbh not painful as such but uncomfortable and crampy then I went vasovagal and nearly passed out 4 times when I tried to get up afterwards! They showed me what he’d taken away and it was much bigger than I expected about 1cm by 1cm but he said the area was really small and he again couldn’t really see anything upon examination. He said he was sure he’d gotten it all and I’d likely be referred for a smear in 6 months. But I don’t trust anything now after what’s happened and now I have another anxious wait for those results!! I think GA is good as it’ll be less stressful for you. All this is horrible I felt traumatised and sore yesterday so taken the day off work today to recover. I am feeling better Today tho. Thinking of you. I’m sorry you’re being messed around too but it’s nice to talk to someone going thru nearly the exact same thing xx