Let me know if they get back to you - I hope it’s soon x
It’s just so hard, my emotions are all over the place, I feel sick about it all and just really want some answers
The nurse has just rang me to say that they’ve cancelled my appointment on the 6th and someone will be in touch soon with a new appointment under GA. she said it won’t be too long to wait as it’s something that needs doing soon.
Unfortunately as I asked her for the results of the meeting, she had an emergency and said she’ll have to ring me back so I’m still waiting
I hope my new job will be understanding but you just never know
Oh bless you! A lot of people have said the smell is the worst bit, did you find that?
The waiting is the worst bit isn’t it, and 6th months is a long time to wait! Did he say if it’s a smear with your GP or a colposcopy appointment?
Yeah I’m hoping it’ll be less traumatic for me as I’ve had a lot of traumatic medical experiences and I think it’s just better for my anxiety
Poor you I really feel like this procedure gets downplayed as to how bad it is. No-one tells you about it or supports you mentally
Aww good I’m glad you’re feeling a bit better today
What’s the pain like?
Thank you, yeah it really is, I definitely feel more at ease having you to talk to! Xxx
Oh my goodness I’m not surprised your emotions are everywhere with all this backwards and forwards with the phone calls! I hope she gets back to you quickly. I have completed hated all this too the not knowing the guessing the vagueness the wrong grading etc…. It’s such a stressful experience and you’re right no one actually supports you and it’s downplayed so much. Yes the smell was horrible but it was the feeling of it being so deep inside me combined with the cramping that I found the worst. I know lots of people have said they didn’t feel a thing but I did. I’m so sick of all the months of anxiety. So he reckons if the results come back confirming he’s got it all and it’s the same grade as the biopsy or less I’ll go to GP for a smear in 6 months to see if I’ve gotten rid of the virus. He told me even if the margins are unclear that will be the case as your body should fight off the HPV after the LLETZ (fingers crossed) I just keep worrying because there wasn’t anything really to be seen on the surface it’s deeper and it might be worse this whole thing is awful. It does make it that bit easier having someone who understands. Let me know how you get on with the nurse calling back and I hope your next appointment is soon xx
Pain has completely settled today btw thanks - it’s just the emotional trauma that continues… x
Me too, that’s exactly it isn’t it! I just feel like at every stage I’ve been told it’ll be fine and then it keeps getting worse. Like I was told the smear was likely to come back fine, then told it was low grade and I likely wouldn’t need a biopsy, then told it was a small area of CIN2 and I likely wouldn’t need surgery. It just seems to keep getting worse and worse
Oh yeah I can imagine that felt awful poor you
The anxiety is the worst, I just can’t believe how long it all goes on for, it’s not fair that they drag it out this long is it
Ahh okay that makes sense, definitely fingers crossed that you manage to fight it!
Oh bless you
I will do, thank you xx
Glad to hear your pain isn’t too bad, do you think it would have been less trauma if you’d had it under general? Xxx
Yes I feel the exact same! Being told it’ll be fine and then it’s not. It makes you lose faith although I’m still so grateful this service exists of course. I struggle with anxiety too so I can imagine how stressful it is for you as it’s been pretty unbearable for me so far. Regarding GA - yes I suppose it would have been less traumatic but I also find GA scary so it’s all swings and roundabouts I suppose. I am glad it’s done and you will be fine with the procedure and afterwards as I feel much better already but it’s not a nice experience whichever way it happens. Any news from the nurse yet? X
For some reason I didn’t get an email saying you’d replied! And then just came on to update you and saw your message
So the nurse called back later that day and said that my smear was upgraded to high grade in the MDT meeting and that’s why they’ve decided to do the procedure. She said it’s still CIN2 and it’s still a small area so that’s good news at least.
But I didn’t really understand it fully if I’m honest.
I’m still waiting to hear about an appointment date for having GA, I’m hoping to hear soon.
I’m finding it really difficult to come to terms with needing this procedure. I had a lump removed from my breast last September and although I was nervous, that didn’t phase me as much.
Honestly thinking about the procedure makes me feel physically sick, more because of the idea of a stranger doing something internal than anything else.
I don’t know why I’m struggling so much with it but I’ve been crying on and off a lot and feeling very anxious about it all
I feel like my body has failed me as well
How’re you getting on? Xxx
Morning lovely - no worries glad you’re ok I was thinking about you. I’m so glad you have an answer at last and they’ll explain it all to you when you go. They didn’t upgrade my smear it stayed as cin1. It’s all so confusing and it worries me that they seem so set on treating you with focal cin2 when they said I could leave mine with focal cin3?! Wtf?! Honestly it’s all so confusing. I feel the exact same re my body letting me down! It’s reassuring to know it’s not just me feeling these emotions. It’s like because it’s a screening service we are expected to be fine and not need support but it’s such a worrying traumatic time. I’m going thru a mix of emotions worrying re the results and glad it’s been done at the same time…. It feels endless. Hope they contact you with a new appointment soon xxx
Please don’t be too worried re the procedure I’m so sorry it’s making you feel that way but honestly you will be fine especially asleep you won’t know anything about it and when you wake up it’ll all be over and they’ll look after you. Hugs xx
Aww thank you.
Yeah I’m hoping I’ll get some more explanation when I go because I’m also quite confused about why they’ve decided to do the procedure tbh. It just seems so weird and not consistent across the country which is bizarre
I agree, it definitely is helpful knowing that I’m not the only one feeling like this
That is so true, it’s ridiculous that the emotional support is not there. You’re totally right that because it’s a screening service they think we should be okay but it’s a big deal!
Oh bless you when will you get the results?
Thank you, I’m trying really hard not to worry but I am a very anxious person anyway so this isn’t helping. I’m hoping I’ll be better once I’ve got a date
I’m exactly the same lovely I’ve always been an anxious person. I’m thinking of you and here if you want to talk xx
Thank you same to you!! Xx
I can certainly validate that the colposcopy experience is very distressing and I have a ton of anxiety due to a very rough and painful experience the first time I had one done. In my experience I was asked whether or not I planned to have children and I said I did not know and that I was single. So options were discussed and I chose the option that would preserve my cervix for now although prior to surgery I also was made fully aware that if it was evident during the laparoscopy part of my surgery that they would remove my hysterectomy. I gave my consent for this prior to the surgery and had been given the option to not consent. Come out of surgery. Have the findings discussed and then I would make a choice about next treatment steps. So in my experience, my perspective was taken into account while at the same time I gave them full permission to do what they needed to do to remove any cancer that they found.
I don’t know if that helps at all.
Hey, how’re you feeling?
I had a letter through on Saturday letting me know that my surgery is next Tuesday (31st)
I’m absolutely bricking it to be honest.
It’s been a bit of a nightmare as well because I’ve had to chase them up about a pre-op appointment - they didn’t give me one originally and I wouldn’t have been allowed to have the surgery without it!!! They’ve been so shit
I was also told on the phone by someone else that I should have been given the option 4 weeks ago to stop my pill as there’s a risk of DVT if you’re still on the pill. But I didn’t even have my results 4 weeks ago
I’m just so emotionally drained by it all and feeling so fragile all the time
Do you know how big a chunk of your cervix they took btw? Some websites seem to say it’s a small square and then some say they take the whole ring around the entrance to your cervix
It honestly makes me feel so sick thinking about it
I’m ok thanks just waiting for my results, I’m going on holiday today so I’m just gonna be thinking about the post the whole time wondering if it’s come and what it says etc…. The whole thing has taken over my life for months. I’m glad you’ve got your appointment and at least it’s soon so not too long to overthink it and it’ll be done before your new job too. It’s so bad re your pill tho they can’t expect you to know things they’ve not told you. The whole thing is so badly organised doesn’t help with the anxiety does it?! The cramping etc subsided after a day or two but I’m warning you the discharge is disgusting!!! Sorry tmi but after a few days it becomes watery and smelly and gross you feel like you’re bleeding really heavily or weeing but it’s just all this watery crap. It’s horrible. I think it’s slowly decreasing now tho fingers crossed!! So for me they took a 1cm by a 1cm chunk - the whole of the transformation zone which is standard apparently?! I couldn’t believe it when they showed it to me in the pot I thought it would just be a small thin layer! I did ask to see it tho (kinda wished I hadn’t after) x
Oh bless you, the waiting is the absolute worst did they say how long it would take for your results to come back?
Are you going anywhere nice on your hols?
It really does, I just think it’s so unfair how long it all takes. And they act like it’s so routine and are so blazé about it all
Yeah that’s true, I am quite glad it’s so close to when I got the letter so it’s less time to panic and at least it’s in my summer hols so I’m not worrying about time off work or trying to do my job in the run up
I honestly think if I’d been at work at the moment I would have had to have some time off sick for my anxiety
It really doesn’t, I’m so tempted to make a complaint because they’ve messed so many things up. It’s luck that I’m a proactive person and took the initiative to ring them otherwise I would have turned up on Tuesday with no pre-op done and would have been told I couldn’t have the surgery
Yeah I’ve read that it’s the discharge that’s disgusting and that’s what I’m really worried about for work. Being a teacher I can’t go to the toilet when I want to and I find that hard enough on my period when I use a tampon! Also I’m standing up all the time and I feel like I’m not going to be able to ignore the gushing
So I’ve heard a lot of people say the discharge is smelly. Is it just that you can smell it when you change pads or go to the toilet etc or is it bad enough that other people can smell it? I’m really worried about this as kids are mean and I’m starting a new school so I don’t want them to have any ammo
What’s the transformation zone? I’m finding it hard to visualise what 1cm looks like - might need to go and find a ruler! X
So the latest in the nightmare that is my surgery is that they’re now not sure I can have it cos I had Covid less than 7 weeks ago
But of course they didn’t pick that up until today at my pre op and my consultant is away until the day of my op so they’re having to try and get in contact with her but if they can’t, they’ll have to ask a different consultant but if that consultant says yes, mine could still turn up on the day and refuse to do it because at the end of the day, she’s responsible for my safety
So I may have to wait another 3 weeks
Hi lovely sorry been driving to Devon, I live in the Midlands btw where in the country are you from? Omg I actually can’t believe that!!! That’s absolutely terrible I can’t believe how much you are being messed about and all the anxiety with getting prepared mentally for the procedure and then maybe cancelling it I’m
So sorry to hear that I really have my fingers crossed that they’ll get back to you soon with an answer.
I know what you mean re being proactive too I would’ve had like one days notice if I hadn’t called - I can’t believe how not bothered they all seem to be about everything it’s our lives at the end of the day! So re the discharge I think it’s only smelly to you like not strong enough for anyone else to notice but I was worried they could but mostly when you change pads. I work in the nhs so I’m constantly up and down seeing patients too so it’s not easy to keep running off to the loo!!! The transformation zone is the area of the cervix which is where cancer usually starts where the cells change type from squamous to glandular so they remove it all xx
That’s okay! I’m from Newcastle
It’s a complete joke, honestly I’m just so tired of it all
I think if they can’t get in touch with my consultant but another gynaecologist says yes, I’m going to ask them to postpone it because I really don’t want to turn up on the day and my consultant say no
Thank you, I think the guy said 24-48 hours but who even knows if that’s true at this point!!
Exactly, I just can’t believe how much worse this could have been if i hadn’t called them
Like I wouldn’t have known I needed a pre op if I hadn’t had surgery last year!
I know, they’re so chill about it all and it’s like do you not get that this is affecting our lives?!
Ahh okay that’s a bit better then, I was worried other people would be able to smell it, I’ll just have to make sure i change pads often! I think I’m going to get some period pants as well
Oh bless you! How have you found it not being able to go to the loo that often?
Oh wow okay I didn’t know that that seems like a huge amount to remove!! Especially as my area is apparently really small… I’m going to have to ask them about that on the day
does that make it less likely that you’ll get abnormal cells again? Xx