I have posted previously and thought I would provide an update to see if anyone has gone through similar or can give me some advice. I went in for my emergency appointment on the 8th of December where they performed the LEEP procedure. The consultant was very unhelpful rushing to go on her lunch after leaving me sitting there for an hour before the procedure! I tried to tell her about the symptoms I was having which she just brushed off and rushed me into the stirrups. She rushed the whole thing, did not give me any information and said she had removed a mass to be sent for testing. I did see her write CGIN down and she also said that “she could not get it all” during the procedure as I have not had children. She also said that “whatever it is is aggressive”. Background is I had CIN 1 2 years ago that is now CIN 3 October just gone. They used two swabs in the smear this time around, I am worried it’s been sat there for a while due to my symptoms and missed where the cells are further up. I have not received any results yet and I am currently playing a forever ending waiting game it seems. I have an ultrasound tomorrow ordered by my GP who is just as appalled by how I’ve been treated. My questions are: what does she mean by she can’t get it all and what am I looking to expect coming up if anyone has gone through anything similar? I’ve put on loads of weight, it’s constantly going through my head and I can’t rest!
I don’t have much to comment about your particular situation as mine was a little different. I just wanted to comment on the Dr side of things.
I am also 26, so this is all from my very first smear test last year. I had a similar experience when I had my lletz procedure. They were running 50 mins late and I could tell the Dr was in a rush. She was throwing lots of information at me, trying to get me to choose conservative management at the time (biopsy showed CIN2). She was implying that if I needed any future treatment it would affect future pregnancies. It actually felt like she was scaring me into not doing the lletz. But I wanted to get rid of the cells.
She almost rolled her eyes when I said I wanted to go ahead with the lletz. She did not say a word to me the whole process, she talked over me and then just walked out when it was done. She didn’t prepare me when she started doing anything either or said how the procedure went. The nurses were lovely and explained everything afterwards. But I left feeling like I had no idea what happened and a bit traumatised. I can completely understand how you feel and how disappointing it is to have that sort of experience. I understand the NHS is really struggling right now, but that doesn’t mean we need to be spoken to like this. Especially when it’s our bodies and in such an intimate area. I’m so sorry you went through this and it sounds quite scary, especially when they throw words around, without explaining.
I fed back my experience and have requested not to have that specific Dr again. I have since had another colposcopy, where the Dr was really lovely, explained every step and what he could see. He also answered every question I had to ask (and there were many!). The Dr really does make a difference. If you have any further appointments I’d recommend asking for a different Dr, it really can make all the difference.
Sorry for the long paragraph! With that being said. I do hope you get the results soon and it all goes okay I am waiting for biopsy results too, its truly horrible waiting… wishing you all the best x
Thank you so much for your kind words and personal experience. Indeed they are struggling but it’s just insane over such a serious subject how you are shrugged off! I’m hoping to get some sort of reassurance from this scan tomorrow that I am not getting from the consultant. It’s so unprofessional to say something like “I couldn’t get it all”! I still have no idea what she means but hopefully I can get some clarification eventually. I think I will be taking your advice and asking for a different consultant. I am already down the complaints route after them misplacing one of my smear samples! Sending you the best of luck for your results x
No problem at all, it definitely helps hearing other people’s experiences. Oh yes, it’s incredibly unprofessional, and I’m sorry you’re left feeling scared and worried because it wasn’t explained. I think unfortunately some Drs don’t have the best bed side manor. I just try to think at least they’re keeping an eye on us and preventing anything worse, even if they’ve been unprofessional.
I hope you can get some reassurance today with the scan. Wishing you all the best! Thank you so much
Been given some of my results over the phone. She said she couldn’t give me the full report and I have to wait for the letter (not sure why). The LLETZ confirmed severe is all she told me and that I will have to go back in 6 months. Seems pretty bold to wait 6 months when they know it progressed from mild to severe in a year! Will have to wait and see the full details on the letter but at least it has been caught where it is at.
Hi @Camo if you are in the U.K.and m want more info about what is going on or you arnt happy about anything please make sure you complain to PALS at the hospital it is their complaints department. Once you make a complaint to them the head nurse will take over and ensure you are given all the info you want. If you also want to be nosey or for reassurance request a copy of your health records then you can see exactly what they have wrote/found. Hope your recovering ok from the lletz xx
I’m glad you have got some form of answer but still frustrating. I imagine it could be a good thing that they want to wait 6 months as it may mean they might have removed it from the lletz. But annoyingly you’ll have to wait for the results to confirm anything. I hope the ultrasound went well!
I agree with @Hanandlee, it may be worth talking to pals! xx
Thank you for your replies, they really helped reassure me too.
I had a letz procedure in 2022 with Cin2 and high risk HPV; I kept getting told that the letz would clear it all and I will also clear the HPV within two years. When that did not happen (I have recently had a HPV positive result with CIN1) I’m struggling to get any answers. I don’t know what this result means for me and my future. I tried to ask the questions but was completely brushed off and told to just take the vaccine, it won’t help my HPV but small chance it can stop other strains.
I can’t help but think the worst if it keeps progressing and if the letz didn’t clear it the first time. I’m currently in therapy and have some lovely friends to speak to but it still feels like no one really understands how alone it can make you feel.
In regards to waiting for your biopsy, if you have the nhs app they normally upload the letter there before you actually receive it in the post - if that’s any help to you!
Thank you for the reply. Yes, I have had a similar experience to be honest. I was told that everything was removed and the margins weren’t even involved! They said it would be unlikely to come back. I understand they probably don’t know the reasons why some of us are in this position. But when you’re told it only happens to a small percentage of people, and then it happens to you. It doesn’t feel very good. My Dr kept saying I was in 5%, which I think he was trying to reassure me, but when someone says you’re in the minority, it’s difficult to think what else might happen!
I was actually one of the first years at school to have the vaccine… though I have been told that It can help, even if you do end up getting HPV.
Yes, I am also in therapy and have been put on medication because my health anxiety has gone through the roof! So you’re not alone.
Oh okay thank you! I am not sure if I am able to see any results through the app, I think I can only make appointments. But I will have a look, thank you!
Yes you login and when you go into GP record if you scroll to the bottom you will see a tab that says “documents” all your letters should be there. Unfortunately some of mine are not because I changed GP surgeries but all your recent letters should be in there.
So sorry to hear your anxiety and health is worse. It’s so hard when they say stress affects your immune system yet this is the most stressful thing ever. I don’t know if you can relate but I’ve begun to feel guilty even when I’m stressed or anxious because I feel as though it’s making me worse- clearly not the best thing to do as it’s adding more stress and anxiety!
I also can’t help but wonder if the exercise and eating healthy and sleeping good etc helps at all because I’ve been relatively healthy the past two years. I joined the gym and started really looking into healthy eating options before my diagnosis.
This forum has really helped me feel less alone, but also more confused as it seems there is no pattern with anything. It can either get worse or better and that’s what we have to come to terms with and accept. I’m hoping that what people have been saying on here is true, that it is best to keep going for smears and routine checks, if they find something they can remove it. It’s good to hear people that have been diagnosed with more severe cases have also had it removed with a Letz and that hysterectomy options are also available for special cases for those who need it. As morbid as it sounds, it’s reassuring to know that we are getting the help we need for whatever stage we are at and hopefully anything bad gets treated and sorted…even if the system is absolutely awful. I’m lucky enough to be from the UK as i know if I had to pay for my treatments I would have added financial stresses.
If you ever wanted to chat further or even talk on the phone I’d be happy to - if you feel it would help your anxiety / your health as I feel I’m in the same boat. It would be nice to be able to talk to someone who can really relate. Happy to swap emails or create a new email to make sure it stays anonymous. Xxx
Thank you, it looks like I need to ask my GP for access, so I will speak to them!
Yes, I have been thinking the same. It feels like I should be trying to reduce my stress but it’s hard to relax when you’re waiting for results ect!
I agree. It’s a wonderful platform, but I think you have to be careful because you can end up in a bit of a hole I find. I am trying not to google too much, or read worse case scenarios. Yes, this is what my GP has told me. She said that as long as we keep up with appointments and health checks, it’s all very treatable. I try to remind myself that if the worst happens, at least it should be caught early! I am also from the UK, and I am so glad that this was all caught and they’re keeping an eye on me Even though it’s pretty stressful!
That sounds lovely. I am not too bothered about being anonymous, but happy to organise something if you prefer to remain anonymous. I think I can send you a private DM on here but I just need to work out how! xx
A further update! The biopsy showed CIN 3 as suspected but what I am concerned about is that she had admitted during the LLETZ that she couldn’t get it all? They have sent me a letter saying CIN 3 but no further action until June where I have to go back to the hospital. I’m just so confused as to how it can just be left when she couldn’t get it all! So concerning. Been told nothing about margins either. Hope everyone else is doing well.
Hi Lucy
I have had a similar experience. Had abnormal results from smear test in August so was told to go for a colposcopy in September. I then received a call from the hospital saying that a chest X-ray and MRI scan was needed. I had no idea why but they said it was just procedure. I did as was asked. Then I received a letter saying that I needed a repeat colposcopy in November. That was horrendous I might add. The anesthetic didn’t work properly but the doctor said he had to carry on. He injected me several times with anesthetic but it just didn’t work. Must say the nurses were amazing. November 1st that was done after been told that it was cancer. MDT meeting was held January 8th about my case. I am still waiting for a letter. I did call the hospital a week before Christmas for some answers and was told the cancer has been removed but cin 3 is still present. I spoke to the nurse and said no way am I going through that again. She advised me that if needed they can do it under general anesthetic. Bloody hell, that’s the way forward for every woman. Next time I will definitely be knocked out.
Urgh that’s so frustrating that you haven’t had a definitive answer! I’d take it as a good thing that they want to see you in 6 months. If there was anything left, hopefully your body will naturally fight it off. Sending positive thoughts! All okay here with me, just waiting for biopsy results, unfortunately I still have abnormal cells after my lletz! Dr was not concerned at all and only did biopsy as a precaution, it’s just the waiting that’s the worst part!
I’m so sorry to hear about your experience and diagnosis. It sounds like a really stressful experience, especially when you’re not told everything, or why the extra tests were done. I’m glad they managed to get the cancer and hopefully you can deal with the CIN3 that was left. Having Drs that have great communication, really makes the world of difference and I’m sorry that you had to go through that.
I hope the rest of your journey goes well, and hoping for a more positive experience. If you have any further procedures I hope they go smoothly for you
Thankyou Lucy. It was MacMillan support that made me aware of this forum and it really does help knowing that lot’s of ladies are in similar situations as myself. The waiting is the hardest part and not knowing anything. I suppose the doctors just expect us to Google for ourselves. That is what I have done and most other people I expect. Talking to other people in similar situations is so good and real.
Hi everyone.
Update. I finally received a letter from the hospital regarding my lletz procedure on November 1st. I am feeling quite positive. In September the lletz results were squamous cell carcinoma, grade 3, stage 1A1 at least. Today’s results came back CIN 3 & HPV. I have to return to the clinic for another colposcopy in 6 months. Feels like I am on a merry-go-round. Oh well. At least I have results so can try and relax now.
Spoken to MacMillan support today and they advised me to plan ahead about pain relief and maybe sedation regarding my next colposcopy. Good advice. No need to stress right now but it is difficult. Plan is to take control and make sure I do next time.
I am waiting for biopsy results too, its truly horrible waiting… wishing you all the best x
Even though it’s pretty stressful!
