This would actually apply to smear results as well, I don’t know what its like in everyone elses health board areas but in mine (Forth Valley, Scotland), the letters they send out are a bit of a joke. They tell you NOTHING.
I had LLETZ at the end of October and had the hospital not called me last week (which I don’t believe is standard practice but was only done because of certain notes in my records), I would have been pretty shocked by getting a letter today that literally only says
"A biopsy of the cervix was taken and the results were CIN (not cancer)
The test results indicate that you will require treatment which would best be carried out at the colposcopy clinic. Details of your appointment are enclosed" (the details are just the date and time of the app)
Given that I was told that the LLETZ would almost certainly clear the CIN/HPV and I would have to be extremely unlucky for it not too.
Its clear from reading these forums, speaking to others and from my own feelings personally (when I had my first abnormal smear it just said ‘changes detected’ of course I googled and assumed it would be CIN 1, to turn up at clinic and be told CIN 3 I was completely shocked and agreeing to biopsies was absolutely NOT “informed consent” because my head was absolutely spinning and it was all round an awful and emotionally draining experience and resulted in me subsequently refusing any treatment until this year and coming very close to opting out of all future smears) that going through all this is immensely stressful and the lack of information just make it worse. Speaking to the staff (nurses/drs) when I’ve been in for appointments they obviously understand this, so I just don’t get WHY they are sending letters out in this format. In my opinion it just makes things worse and really makes me quite angry!!
Actually its making me rethink my decision to opt for a second LLETZ (January) rather than wait for test of cure (end of April) because all the mistrust and feeling of being lied to is all coming rushing back.
Hello yes definitely we don’t get enough information and then we end up having to Google everything . When I had my byopsy I was in total shock no-one told me before that there was a chance they may do that It was horrible I cried non stop as soon as I left the place, I told them if they ever needed to do this again will need to be with local anesthetic or I will refuse to get it done. LLETZ was a lot better as I was prepared and well informed and knew what to expect and with the local anesthetic felt absolutely nothing.
I am guessing you did not have clear margins and they want you to have a second LLETZ please don’t cancel and go in January most likely you will get treatment and that will be it. If you don’t go you risk this getting worse.
Is very annoying that information is so limited I know doctors and nurses are busy but I am sure they could come up with a better system for us, again it seems that all women issues are always a second thought. Take care good luck for January
That is pretty much exactly how my first colposcopy appointment went, I was completely unprepared and also ended up in tears. For some time afterwards I was freaking out waiting for results, to the point I called the clinic for an update because I could barely function at work and was told they had nothing yet. I ended up waiting FOUR MONTHS for results because it went to MDT. No one told me. I got nothing at all until 4months later when I got another extremely vague letter to attend the clinic for treatment. Which actually turned out that the biopsy came back CIN 1 so they were happy to wait until 6 month smear rather than treat straight away… which due to the delay in getting results was due at the time of my colp. appointment. Which I was furious about because I had taken time off work to be there, and it could just have easily been a 5 minute phone call. The Dr said to me ‘but aren’t you glad you came in to talk about it?’ eh, NO!!! That wasn’t the end of it, more things happened that resulted in me refusing treatment and not going for another smear for 3yrs.
I also found the LLETZ went a lot better because I felt INFORMED and was able to mentally prepare myself. Bit I had specifically requested that they call me as soon as they had the results from the biopsy so I was able to discuss things with the nurse again then.
Doctors are always telling us not to google symptoms etc, but what are you meant to do!! I would also say that the aftercare leaflet I got after the LLETZ was also extremely poor and lacking in information.
This my only real experience of having tests etc at the hospital so I would be interested to know if theres anything comparable where they are so reluctant to provide information until pushed.
Yes, only one small area of not clear margin which may have been caught by cauterisation so I was given the option of another LLETZ or wait for test of cure. I decided another LLETZ because a- it’ll be done much sooner and b- if the test of cure came back not clear they would probably go straight for LLETZ but there is a possibility they’d end up wanting to do more biopsies first and NO THANKS, I’d rather just get it over with. Now I’ve calmed down I know LLETZ is still the right choice for me!
Agree with you totally on the lack of information in letters. I had smear 20 Sep, got results letter 22nd Oct, saying high risk HPV and cell changes, to expect a letter from colposcopy clinic within 8 weeks. I didnt worry much to be honest as I had been to colposcopy a few years earlier and they said nothing to worry about and was to have smear 6 months later, so that was what I based experience on. Then letter appeared 2 days later 24th Oct tell me appt for colposcopy on 2nd Nov, still not too concerned. Went for appt, not prepared in the slightest for anything other than an exam, met Dr and she straight away started talking about treatment before even looking, she obviously had more information than me, but I was bit shell shocked so didn’t ask questions. Got legs up and consultant came and had a look, I admit I should have looked at screen but didn’t, and they then asked me again if I agreed to treatment loop diathermy, with local anaesthetic, I did, and they explained what it did, that was pretty clear, but was never told what they found or saw, and didn’t ask. Was told 4-6 weeks for letter, probably just be sent for smear at 6 months they said. Now at 4 and half weeks and logged on here for more info and feel more informed by the many ladies who shared their experiences. I wish I had known what to ask. Slightly more concerned that I was actually seen so quickly now though. Sorry for long story, trying not to worry about results.
My time scales were similar so I wouldn’t worry too much, smear 8th June, results letter was 5 or 6 weeks later (so 6th-13th July ish), I had my letter from the clinic on 20th July for appointment on 26th July.
I didn’t look at the screen either, I don’t want to see! I did ask to see the bit they removed tho.
Your experience sounds very much like the first time I was referred to colposcopy, I was shell shocked too and even tho the Dr was giving me info before hand because it was the first time hearing any of it and my head was spinning. She did mention the biopsies before hand but same as you with treatment, she didn’t ask me if I consented until I was legs up and she’d already had a look. How on earth can they think its reasonable to be asking people to make decisions in that position?
I sort of passed out afterwards the first time when I went to get up. I have never passed out in my entire life (and I’ve been fine at my apps since) so I can only assume its because of the stress.
I also think its quite bad that they make such a huge deal of how important it is to go for smears, but they tell you absolutely nothing about what might happen if they find abnormal cells. I’d never even heard of colposcopy until I was referred. And I was 100% like “wtf, what even is this???”. To me its very much marketed as ‘as long as you go for smear tests you’ll be fine’. And then of course the fact that you’re then given the absolute minimum of information and left to let your imagination go wild.
Totally understand where you’re coming from. You can’t make an informed decision if you haven’t had it explained properly. While yes, they are the medical profession, it’s your body and you’re the one left to deal with things. They need to know that they are dealing with people and need accountability for their decisions and the way that they explain why they are doing procedures etc X
Yeah they totally need to provide more information about colposcopy.
Biopsy
1st time - thought I was going to die
2nd time - thought if I don’t get treatment now I’ll never have children
3rd time finally got treatment - not 1 bit prepared for all the side effects and how long they’d last - feeling more positive in general about it all. More reassured I’ve had treatment.
Hope they start providing some good information, if it wasn’t for this page I’m not sure how high my stress and anxiety would be
