Colposcopy referral feedback

Hi, I've recently become a patient representative on the *Area Removed* Cervical Screening Board and I would welcome other people's experiences of having smears and in particular the colposcopy referral & treatment side of things. The aim is to improve what is lets face it, a crappy thing to go through! It's never going to get easier to go through it, but as someone who was referred to the colposcopy unit (& which unfortunately turned out to be cancer, although after surgery I am now clear) even the pre cancer diagnosis treatments were scary and I found some of the communication I received in writing & in person to be unclear & not particularly helpful.

If you have any feedback I could feed into the decision making processes, that would be great.

Thanks

Rachel

I think my main issue has been lack of information about what's actual going on and how serious it is. For example I had a colposcopy a few weeks ago and received a letter that simply said "your sample has shown pre cancerous changes, this is nothing to worry about but you require treatment". It's very confusing to see the C word and then "nothing to worry about"  right  next to it. They need to think of a better was to describe abnormalities other than pre cancer because even high grade abnormalities aren't guaranteed to become cancer. I was also not given any information about this treatment -  I know what it is from looking on here but if I didn't google it I'd be none the wiser! My personal experience of the actual colposcopy appointment wasn't great either, not sure if that's relevant but I basically felt treated like a naughty child for trying to be light hearted and ask questions. It was all a bit rushed and if I hadn't demanded an answer to my questions I would have left that room not knowing any more than when I entered, I wasn't even told about any of the after effects of the biopsy I had, when I could use tampons or have sex. 

 

I just expected the whole system to be a bit more... Sympathetic? I mean, I've had more sympathy from dentists and nurses in A+E so I don't see why the people who do colposcopy can't just be a bit more.. Human? Maybe im exaggerating because I was so nervous. 

 

On the good side I've always received my letters and appointments very quickly, but there are loads of women on here who've had to wait maybe even 6 weeks for results. It's such a stressful thing  to go through, I was bad enough waiting 2 for mine! 

Hi my main gripe is that the letters we recieve just book your next apointment but dont actually say why so we have nothing in paper format and my work places tend to require more info plus it would be nice to actually see your results.

For example, my punch biopsy resuts were in within 7 days (they told me on the phone as I called and called them) when the actual letter arrived it has no mention of the results what so ever, it just books me in for a pre-op. NOW-if I hadnt have called I would have just recieved a letter for an operation and not have a clue why. In my eyes this is pretty basic but very scary stuff.

I hope this is the kind of thing you are looking for.

Jodie :)