I had been told verbally by the secretary last week that I was to have LLETZ after being diagnosed with CIN2 on biopsy, though colposcopy and smear had shown borderline and low level changes. This is what I had requested and also what seems to be the recommended treatment. She had looked up the MDT notes.
The secretary told me as I had been due to find out the week before but the MDT had been cancelled. Then the nurse had also failed to phone me, presumably because she was too busy.
I was surprised and a little anxious to find two letters through my door today. One is rebooking the telephone appointment for this Wednesday. The second is a 'review appointment' with a nurse or member of the team on 24th May. No mention of LLETZ, or any leaflets etc. Just 'a face to face appointment would still be best to manage your medical condition'-very vague.
It might be that they dont want to send me anything more definite until they have confirmed with me what i would like. I supoose I am wondering if they might be offering me 'watch and wait after all'. That would be unusual at my age, though and not what I requested.
I suppose I should be relieved that the appointment is in 6 weeks time, I suppose they cant be too worried about me. I was told a LLETZ within 4 weeks last week.
Im just quite confused and feeling that no information would have been better than confusing information. Having spoken to my partner we are wondering if this might be something to do with the original appointment for colposcopy which I had on a cancellation in March ? I'm going to ring in the morning
Replying to self
Appointment in May is for Lletz
seemed quite a long wait ?
I think it is just within the 18 weeks ?
Hi Rebecca1965,
It seems very unfair to make you wait so long for your treatment however I guess you could feel reassured that you are not an urgent case. It depends how you look at it I suppose. Personally I think the waiting is the worst bit so I feel for you and I hope you get some resolution to this soon.
Lots of love,
Xx
Gosh Rebecca, what a confusing time. Did you call them up in the end?
I don't think there is an understanding from the medical teams, who deal with this day in and day out, of the emotional consequences vague and conflicting information can have.
How are you? Xxx
I called them. The ' review' was the lletz- must be some sort of generic letter.
nurse is phoning tomorrow. I suspect the timescale is due to the ' 18 week rule' for treatment for all non urgent cases. It's 17.5 weeks since my positive smear. It's all ok and I have been too anxious about it. Good job my job are understanding as at present I am not really as competent as I should be
Dear Rebecca1965,
It really is a lot to take in and all the waiting is so hard. I ended up with a cancellation for my second lletz which we great as it was awful not knowing when it was going to happen and the thought of a long wait. They rang me with a cancellation the following week! I wonder if you could ring the clinic and ask if you could be considered for a cancellation if one comes up?
Xx
I have asked for one but is hopeless as the nurse was supposed to phone today but didn't.
I think I don't care too much really as I think it was just to explain about what a lletz is and I know that.
Apparently the secretary sits in the MDT so when she said I was down for one and it is that May appointment she knows what she's talking about
i counted the weeks- is 17.5 from referral to treatment which is just within the 18 recommended. I suppose I'm not an urgent case but it's been more confusing than anything
Bless you Rebecca, they really have put you through the mill.
What can you do this week to give yourself some much needed respite from all of this? Xxxx
Thank you LL x
i phoned this morning and they aren't bothering phoning now - just said come in on the day and you can ask any questions. I asked if I could have sex before lol and was told 24 hours.
They also said there might be cancellations.
I had a little look at my cervix. Looked kind of ok with a few pinky and whitey bits. but quite healthy looking. Wonder if the whitey bits are the cells. I love medical things.
what am I going to do? I couldn't work today and havd been very anxious. I am going to join a course on autism today ( kind of my assessment job), meet my son this week. He's autistic, as is my partner. My friends are supportive.
Tricky sometimes with my partner. He's very autistic and I don't live with him. If he's upset, and he's worried about something, he sometimes goes to ground.
Plus I blocked someone on the hpv forum on Reddit. It can be less than helpful, though sometimes informative. He was doing a lot of cervix mansplaining as was a forum for women.
I am aware I am having an easy time of it compared to most. You are all so brave x
What's every one else doing ?
Hi lovely,
My son has autism too and I care for my brother who has autism but lives in supported accommodation.
I've thrown myself into work which has helped (I'm self-employed) and this weekend my plan is to do some work, clean the house before my op and read a book a friend has sent me.
Sending you big hugs. The level of anxiety we experience can be very similar even at different stages ?
My daughter I think also is autistic
You are absolutely right xxx
i am sure you will keep us up to date on your experiences too. It is so helpful when you do x
