confusion over lletz

I was told a while back that as my biopsy showed CIN2 that I would be offered a lletz, even though my smear and colposcopy looked low level.

The nurse was going to phone today to advise. they are obviously very busy as she phoned an hour late. When she phoned she said that the MDT had been delayed as they had had technical difficulties and she was going to phone again next week. Next week is the internment of my daughter's ashes but I wasnt going to wait any longer so i asked for a late phone call. 

I asked her whether there was any doubt about my treatment and she said that they might try a wait and see approach but knew my preference for Lletz. i replied that i thought it was indicated for someone who was 55 and had had 4 children, and that is what the previous nurse had advised. 

I'm feeling a bit worried now, as had hoped my lletz would be in a week or two and had been told that. She also advised me to get a vaccine-i had said i had wanted one but to be honest am not sure this is necessary until i have cleared the infection. I asked if she could tell me which strain(s) i have as this might help me make the decision. 

On the plus side, she did tell me I could have entenox. i have a tendency to have a startle reflex when anxious so thought it a good idea.

A bit worried and confused now. i think I will check the NICE guidelines again as i am sure that a lletz is the best treatment in my case

 

 

Oh Rebecca,

 

I'm so sorry to hear about your daughter. I'm surrounding you with love and light.

 

I've done a lot of research and my understanding is that there are a lot of unnecessary surgeries that take place, so as much as possible they now try and not do surgery.

 

Between 80-90% of low grade CIN clears up on its own within two years. In comparison the psychological effects of LLETZ surrounding Anxiety and lower labido was pretty high impact (I can't remember the exact details I read now).

 

It is your body though and you should be given ample opportunity to discuss your feelings and all options with a specialist.

 

Don't forget about Jo's helpline too, they may be able to give you a lot more information to help you come to a decision. Xxx

Hi LL xx

Thankyou for your thoughts about my daughter. She died two years ago now, but her brother wanted her ashes interned locally so he could visit, so that's what we are doing, as well as other daughter wanting to scatter a few elsewhere ( other daughter isn't too worried). 

Re cells/ Thet aren't low level though, they are  moderate high. Well according to biopsy, which I think is the best test ?

and I'm ancient, which increases risk. Worry is I will have to have a more extensive lletz if it's left. That's what I don't want :( 

I hope everything goes as well as it can do and that it's as lovely as it can be xx

 

I agree with you, definitely push for an appointment to discuss with someone further. My experience is very much that the people I've spoken to on the phone haven't necessarily known my full details and that's left me feeling more distressed. During my call on Friday I'll be requesting a face to face appointment with a consultant who can sit and explain it all in full to me as the lack of information and the miss-information is not helping at all. Xx

 

Yes, that's what the Macmillan advisor said too. I did feel that this nurse wasn't particularly informed and couldn't wait to get me off the phone. I think they are all very pushed for time and I understand that. However giving me different information every time is worse than telling me nothing 

Hi Rebecca,

 

I wholeheartedly agree.

 

Surrounding you with love and light xx

I phoned today. I think I am annoying them, but also mentioned post menopausal spotting ( post coital) which I have had for years. It was investigated and nothing found in 2017.

what may have happened is they had the older letter yesterday- I received it this morning. It mentioned ' borderline changes at smear' and ' cell changes' but not CIN 2. It was from the nurse not the doctor and hadn't got up to date info. That might have been part of the confusion 

Don't worry about annoying them. I'm sure thats just our own worries rather than reality. Hugs x

 

Are they going to see you now? X

Hi Rebecca 1965,

Sorry to hear about your daughter. I hope everything goes well next week.

I hope you get everything you want from your treatment too. My understanding is that the team will take your wishes into account when planning your treatment.

Sending lots of love,

Xx

They are going to phone me next Wednesday to tell me their decision in the MDT

At least I've given them all the info 

they did sound quite annoyed though- think they were tired. Still I need to tell them things, it's important 

thankyou for your love sent out for Annie 

So unfair of them to put their grievances on to you. You are right, they need to be made aware.

 

Sending big bear hugs. Huge well done for being strong enough to persevere xxx

they didn't phone. I'll phone in the morning