Tomorrow will be 7 weeks since my punch biopsy was performed. Was wondering what everyone else’s waiting times were like? (I’m NHS Greater Glasgow and Clyde).
I’ve called my consultants secretary on Monday to see if anything was back yet, but no results back.
The waiting is the absolute worst part.
Hello Juniper,
I’m under the same health board as you and it was nearly 5 weeks between my biopsy and results letter, where I found out I needed further treatment. I had to attend the first colposcopy appointment on a Saturday as the backlog is so bad in Glasgow and the surrounding areas.
I think calling is the right thing to do as I’ve seen other people on here speak about finding out their result prior to getting a letter. Perhaps if you haven’t heard anything by the end of this week, try again either on Friday or Monday?
I’m sorry I can’t be much more comfort but trust me, I know how you feel. I had my initial referral in January and didn’t get seen until July. The waiting is horrible at the best of times but instead of 8 weeks we’re facing 20-30 because of Covid. It IS horrible but all I can say (despite not taking my own advice!) is try not to worry, there’s a reason we’re screened and no matter what happens they’ll get you onto the right course of follow-up treatment or screening. It’s what the process exists for in the first place.
Tomorrow will be 5 weeks since my biopsy and I am still waiting, I was told up to 6 weeks but can phone for results if I haven’t heard within 5 so I will be calling first thing tomorrow, hopefully I will get some news but the waiting is difficult. I am the opposite end of the country to you so can’t offer any information on local times to you, hope you hear good news soon
Hi all, thank you for taking the time out to reply to me. I posted an update on my original post so I thought I’d copy and paste it here for you.
Update - finally, after a few calls to chase up I have my biopsy results after waiting 7 weeks and 2 days for them.
I received a very vague letter telling me that CIN was found (not the form, ie 1, 2 or 3) but that it wasn’t cancer and that I would require treatment (but which treatment I would need wasn’t mentioned). Attached was a letter with a hospital appointment for September (think it was the 14th).
I’m feeling very upset, angry and let down about the whole way this has been handled and also fearful for other women having to go through this process. Reading that others in this Forum have been waiting for months to even get seen at colposcopy is an utter scandal. The whole point of cervical screening is to detect cell changes at an early stage to prevent them becoming cancer in the future. I worry about how many women will be getting diagnosed with cervical cancer rather than abnormal cell changes due to all these delays.
I also worry that very little is being done to protect a patients mental health whilst they are going through all this. The endless weeks of waiting is torture and I did find my mind taking me off to some very dark places. I’m positive that mentally it’s going to take my mind a very long time to heal from this.
I’m going to pluck up the courage to call my consultants secretary to see if she can tell me what level of CIN they found and what treatment I require. Again I’ll keep this thread updated just in case some other poor soul finds it helpful.
So glad that you finally got your results but am sorry that you had to wait so long. Everything you’ve said here resonates with me, especially your points about mental health. I felt so lost and alone while waiting and there were a couple of people I encountered on my quest to actually get seen who made me feel like a stupid nuisance.
Like you I just got “CIN” on my letter. I rang the clinic direct and that’s when I got told that I have CIN3. I was really upset but more importantly angry as I’d been begging to be seen for weeks and was fobbed off with “your smear was minor/borderline changes so they clinic has made the decision based on severity” - I was also regularly told that it was unlikely I’d have major changes as I kept up with my smears. Well, you can imagine how it felt to then be told I had CIN3!
However, despite the distress it has caused be I am glad that I know exactly what grading it is. The letters that are sent throughout this entire thing are annoyingly ambiguous and I got told it was so it doesn’t scare us…but to be honest the lack of clear explanation (simply saying “not cancer” isn’t helpful to me) has been a major bee in my bonnet. I’m constantly chasing answers.
Fingers crossed that you get some clarification. And no matter what CIN it is, the rest of us will be here to help you rant and rave if you need to!
I’m sorry to hear that you’ve had a poor experience too. I can only imagine how you felt to be told that you have CIN3 after waiting so long to be seen. How awful.
Like you, I always attend my smear test appointments and they have always came back fine. My smear test was cancelled last March due to the pandemic. When screening was implemented again I received a letter advising me to book an appointment. When I called to do this the receptionist was adamant that I hadn’t received a letter and that the surgery would not be performing smear tests due to COVID. The attitude I got was like how dare I request this during a pandemic. I received three letters like this, called each time and was given the same response. The final letter I received informed me that they would no longer be writing to invite me. The attitude of the receptionist put me off booking until May this year.
At my smear test, I literally had my hand on the door handle to leave when the nurse blurted out that she seen ectroption but not to panic. I put it to the back of my mind and forgot about it.
I was then called at the end of June out the blue and asked to attend colposcopy at a hospital miles from where I stay. When I said I couldn’t attend with such short notice I was offered an appointment the day after that at my local hospital. I didn’t even know at the time what colposcopy was. I had to ask the person calling me. I hadn’t even received my smear test results.
At my appointment I could hardly get any info out of anyone. I had to really push to find out what the smear test results were (high risk HPV, moderate/severe cell changes). I asked if there was an urgency about the appointment and I was told no, they probably just had an appointment space to fill. I later found out that isn’t the case at all. Due to my results I was placed on an urgent two week referral pathway.
Like you, it makes me so angry that no one will give me a straight answer about anything. I understand that they do this to reduce anxiety in some people, however not knowing the full story only raises mine. It’s also a major bee in my bonnet.
I called the number provided on the letter they sent with my results to find out what CIN they found and what treatment they are planning on giving me. I was told someone would call me back. I waited over a day, no call. Called back yesterday and was told they have 72 hours to call me back (this wasn’t mentioned in the first call). I was then told in the same call my results are CIN and not to worry as I’m booked in for treatment. Exactly what the letter said. Still waiting for that call back.
It would take less than two minutes for someone to call me and give me my proper results. Instead they are prolonging my anxiety by not telling me. I can’t concentrate on anything else. If they had given me my actual results in the results letter instead of the ambiguous letter they sent, then I wouldn’t even need to call them.
Sorry that was so long winded. I hope at this point a treatment plan is in place for you. Sending hugs. Likewise, if you ever need to talk, I’m here. Xx
It really makes you wonder how many others they’re causing to go through this exact same scenario. I really hope that you get a straight answer soon, it’s a simple question! The level of CIN does inform you what sort of treatment you’re likely to need and what your journey with follow-ups will be going forward. I don’t get why it’s so surprising that some of us want to know so we have some idea what the next 3+ years of our lives, in particular being called for smears, are going to look like.
I spoke a bit more at length in my posting history about what’s happened to me but the short version is I encountered a very rude receptionist at my GP. She basically accused me of not realising there’s a pandemic on and trying to get her personally to speed up the hospital. All I wanted was to speak to the practice nurse but my surgery receptionists have insisted throughout Covid that you tell them what you want before they book you in with a GP or nurse. It feels really judgmental and unhelpful.
I have my LLETZ tomorrow morning and I wouldn’t be looking forward to it at the best of times but all the on-going Covid protocols have made it so much worse. My husband wasn’t allowed in with me for my colposcopy and biopsy. He says he’s going to fight to be let in tomorrow but I have a feeling they won’t let him and I’m just so weary by this point. They’ve caused me no end of emotional and even physical distress for nearly 9 months now and I just think it’s so unfair that had this happened any other time but the years 2020-21 there’d be no question about having my husband in the room with me. We’re both double-jagged and working from home still, we’re still rarely interacting with anyone else for a prolonged period of time outside family (also all double-jagged apart from the kids.)
Given my experience and what you’ve said I think it sounds like you might be getting LLETZ as well. I wish someone had told me that it could happen when I had my biopsy because I was told that often you end up having treatment then and there at the colposcopy clinic and because I simply had a biopsy, and the doctor said he wasn’t worried when having a look, I kinda got into a frame of mind that it was CIN1 and I’d be going back to my GP for smears to keep an eye on it. Especially as I’d been told my changes were minor.
It’s so much mental toil and despite the nurses at my colposcopy being lovely and reassuring, I don’t feel like the leaflets they give you really pay enough attention to the mental anguish aspects. It’s all very…I don’t know, cold?
Please let us know if you manage to get anywhere! I know it doesn’t really change the fact of having a LLETZ hanging over you but at least you’ll finally know exactly what you’re facing.
Hi Juniper,
You poor thing! Such a long wait and then a very generic letter not telling you much other than you need treatment. That sure is one way to scare a patient. I don’t understand why they just can’t spell it out what CIN you have because of course most people will fear the worst if the one you have is not mentioned. It’s also crazy that they told you you need a treatment but again didn’t mention the treatment options. If I had got that letter I’d have had to sit down!
I totally agree with you that there is very little if anything done to protect a patient’s mental health in all this cervical screening journey. Receiving a very vague letter that tells you there’s something wrong but not telling you what and telling you need a treatment but not even mentioning what treatment, sure is one way to have a huge impact on your mental health. You’ve gone through the tests so the least you deserve is proper results and these should be explained properly.
I had normal smears until last November. I went for a colposcopy and was told everything looked fine. She put the dyes on and nothing happened. The abnormal cells should turn white, mine didn’t. She took a biopsy just to be sure and told me I had nothing to worry about. Fast forward to New Years Eve and a letter arrived saying I had CIN3 and needed treatment. Unlike you at least I was told what CIN I had and the two treatment options were listed. I would have appreciated a phone call or something to check if I was ok because to give a patient such reassurance and then drop a massive bombshell on them like that on New Years Eve of all days was awful. I had so many questions how they thought I was fine but I actually wasn’t as I had CIN 3. I think they should not tell patients everything is fine and give them false hope. They should say we will wait for results and go from there.
I rang my GP for advice and he only had received a letter saying I had attended the colposcopy appointment and everything appeared fine. I was the one that had to tell him my diagnosis. Anyway I had my treatment in January. I went with cold coagulation. I had my 6 month post treatment repeat smear in July and I’m waiting on results. All this waiting and wondering is tough going. I feel sick when I see the postman coming!! This forum has been fantastic and I think it’s really popular because there doesn’t seem to be anything else out there for us to be heard.
I am so upset the way you were treated by the receptionist, as if you didn’t have enough on your plate. I do wonder how some receptionists got their jobs. Also as a woman you’d think she would have been more understanding as she could be in this boat one day. It sounds like because she wouldn’t book you in for a smear test you nearly got discharged from the cervical screening programme. This is absolutely shocking and I think you should make a complaint. What if some women have been discharged because it looked like they weren’t bothered booking a smear test when in fact the receptionist wouldn’t do their jobs. I understand there is a pandemic but Covid or no Covid, Cervical Screening saves lives and this needs to continue pandemic or no pandemic. It can be carried out safely with hand hygiene, masks etc. Good luck with getting sorted out, you’ve been through an unnecessary emotional rollercoaster I’d say, a lot of it could have been handled so much better. I hope it all works out for you.
Hi Aikaterine,
It sounds like you’ve had a similar experience to Juniper. I’ve just replied with my big rant to her so I won’t repeat myself but I think it is so wrong how you were treated by your GP’s receptionist too. Again being a woman I can’t understand how they can’t understand why we are so worried and do they not think they could be in our shoes one day too. I know the GP might instruct the receptionist not to take bookings but it is all so wrong and people can at least be polite but if Cervical Screening doesn’t happen it puts women’s lives on the line. Anyway, you can read my reply to Juniper but I want to wish you the best of luck with your Lletz tomorrow morning. I hope your husband will be allowed in especially if you are both doubly vaccinated and with hand hygiene and masks you’d think it would be safe.
Hello, how did your LLETZ treatment go? I hope they allowed your husband into the room with you. It beggars belief that you’ve had to wait 9 months to get to this point.
My colposcopy experience was exactly like yours. I’ve read that others get to view it on a screen and then get offered the treatment there and then. My consultant never even mentioned that he saw anything at all. Instead the gave me into trouble for not mentioning I had a mirena could fitted (he didn’t ask!). Then he said he would take a biopsy to see what we are dealing with.
I still have no answer I’m afraid about the level of CIN I have or what treatment to expect. I’ve been waiting for an answer since Monday. I’ve phoned the clinic daily and it’s making me feel like such a nuisance. They seem to be forgetting the fact these details should’ve been in my letter to begin with. My mental health has deteriorated significantly over the past week due to this. I even contacted my GP practice yesterday to see if they could help but was told they don’t have access to the same files as the hospital.
I definitely get what your saying about the attitude of some receptionists. I think sometimes they forget that at the other end of the phone is ultimately someone who is anxious and seeking reassurance. I little bit of empathy and compassion wouldn’t go amiss! I’m sorry that you’ve also had to experience this.
I was never even given a leaflet at any point during all of this. The whole mental health aspect is completely and utterly ignored. Not once has anyone at colposcopy asked how I’m coping with it all. I know that the pandemic has caused huge backlogs to all services in the NHS. However, I’m also sick that one seems to give a damn about how the massive, unacceptable delays are damaging people’s mental health.
Hello Wonderland2021 and hello again Juniper,
Thank you very much for your replies. I’ve had to split this into two parts!
Unfortunately the hospital were really insistent that my husband not go in the treatment room with me and I just got too resigned/exhausted to argue. I can’t speak for the NHS elsewhere, but NHS Scotland is still following Scottish government guidelines about social distancing in medical settings and they seem horrendously inflexible on that. Fortunately the receptionist let my husband stay in the waiting area so he was there when I eventually emerged but I won’t lie, despite the kindness of everyone I still found it an awful experience to be expected to endure this alone. A nurse just isn’t the same as your mother, your spouse, your best friend etc.
The procedure was fairly straight forward. I was taken into a side room by the consultant (she does all the LLETZ procedures at my Glasgow hospital) and she explained that my CIN3 wasn’t very deep in the surface, which threw me as I thought CIN3 meant it had penetrated all the layers of your outer cervix. She also said she’d be removing an area no bigger than a fingernail.
I had the same routine as when I went for my biopsy, went into a side room to undress and put on a gown (I was wearing a loose dress though so was allowed to simply hike that up under the gown when I went to lie down) - I was also allowed to use the loo as one of my fears whenever I go for a smear is needing to wee! Both times I’ve been in this position I didn’t get to view a screen either.
I won’t lie, I definitely 100% felt a bit of pain when I had the local aesthetic. Not enough to make me scream in agony but she did say “ooh you did really well there!” which makes me wonder if my pain threshold means that other women aren’t so lucky and end up vocally in pain or crying.
I also found “you may feel a bit of pressure” regarding the wire to be sugar coating it. There wasn’t any pain as such but I definitely felt something when she cut and again it made me wonder if, for whatever reason, other women do feel pain at that part.
Not saying any of this to frighten anyone or suggesting my experience is universal but I just thought I’d be honest and say that I think they do downplay the potential discomfort a little with these procedures. I even said to the consultant that I’ve heard of folk saying they get pain during their smears, whereas I never do - but you don’t know what trauma they may have experienced so I just tell people that whatever they feel, it’s legitimate but for me personally I’ve never had pain during a smear (I say this hoping it might help, but know it doesn’t always.)
I know exactly what you mean about feeling like a nuisance because I’ve been through the same thought process, but with the way things are at the moment I’d say it’s better we keep at it. There’s going to be some sort of huge fallout when Covid is all over and the enquiries are beginning and I think part of this will be how many women AND men awaiting other procedures, screenings etc have essentially been left to rot for weeks. I am by no means downplaying Covid. I got my jags, I followed the rules, I’m trying not to catch or spread it. But the various governments and health services are going to have to face up to the huge mental health burden they’ve created.
So that’s why I say, keep phoning! Keep asking! I got told my LLETZ results (for clear margins etc) will be 4-5 weeks. If I don’t hear anything beyond 5 weeks, I’m definitely going to start pestering again because I’m just sick of this. I’m sick of being told it’s “due to Covid” as though I don’t know. I know they see hundreds of women in the same position but we’re all individuals and I wonder if they’re losing sight of the fact they’re dealing with individual human beings in all this.
(PART 1/2)
(PART 2/2)
I’m not even sure if I can face making an official complaint. I did do that earlier on this year (complained to NHSGGC health board) saying that the amount of weeks they were making people wait and how my GP receptionist spoke to me was unacceptable. I got very nice responses but ultimately it felt like I was being politely asked to shut up and go away.
If it turns out LLETZ didn’t get it all I’m going to seriously consider just going private rather than be subjected to all this NHS red tape any longer. But I can probably afford to do that, others aren’t so lucky.
I find that whenever you do try to bring up how you’re coping mentally, there’s this attitude of trying to solve it by reassuring you as though it’s a magic bullet. Reassurance is good, but it doesn’t really address the myriad of connected issues that are whirling around in my brain. For example, I don’t think there’s really much in the way of help over the fact that no sex and then trying to resume sex after four weeks, possibly more might affect you mentally. Even though I’m in a loving, understanding marriage it’s already worrying me that I’m currently associating my vagina with being a “no go zone” and I’m wondering if that mental association will be easily broken when the time comes.
It’s such a mess. Though I wouldn’t want to wish this experience on anyone, I’m glad there’s a few of us going through the same thing right now as it does help to know you’re not alone and you’re not going crazy thinking that several months of waiting is unacceptable.
Really, really wish that someone would actually answer your question soon! Take care x
Hi Aikaterine, thank you for sharing your LLETZ procedure experience. I for one found it very helpful and reassuring to hear. I hope you’re taking things easy, being spoiled by hubby and not experiencing too much discomfort. You’ve been in my thoughts the last few days. Sending hugs.
I can’t believe they never let you take hubby in to support you. It’s the very least they could’ve done. You’re right, however lovely the nurses are, they will never replace hubby/mum/sister support. It’s just not the same.
I agree with what you say about them downplaying the level of discomfort that some women experience. Luckily for me (or rather unluckily) I have endometriosis so I’ve built quite a high tolerance to pain. But I totally believe that some women do suffer needlessly. I put this down to laziness on the part of the hospital as it’s more of a fuss for them to provide adequate pain relief that it is for them to get their patient to grin and bear it.
I called the hospital again on Friday. I practically begged the girl on the phone for my results and treatment option. I must’ve apologised to her a million times for being a nuisance. She said she’d been chasing my consultant all week but he’s just so busy. She then said if I had called on Thursday morning instead of afternoon she could’ve got the consultant then! I’ve been calling all bloody week! He’s back tomorrow so she’ll chase him again then. I don’t even need to speak to the consultant. I just want to know what level of CIN and what treatment.
I did think of making a formal complaint, yet then I thought again when I guessed that I’d probably get a lovely response but nothing ultimately would change. I actually am very tempted to contact my local MP about my experience. The experiences that women going through cervical screening in Scotland just now is utterly shameful. Scandalous. As usual, matters to do with women’s health are being neglected.
I’ve mentioned to too many NHS staff members about how adversely this has impacted my mental health. They should be offering more than reassurance, they should be offering counselling. I imagine this isn’t being offered due to COVID and is probably another NHS service on its knees. Totally get you about the no sex thing. Thankfully like you I also have a very loving, patient, understanding and supportive husband.
I agree it is such a mess. But I am extremely grateful that this forum exists for us all to support each other. It’s definitely alleviated some of my anxiety having others going through the same thing to talk to xxx
Hi Wonderland. Thank you so much taking the time to write to me. I honestly don’t understand why they couldn’t have told me results and type of treatment in the letter. It honestly felt like a kick in the teeth when I received my letter. I waited almost 8 weeks for a letter that ultimately told me nothing. More frustratingly, I’ve spent the last week calling them daily trying to find out and no one can tell me anything. Why they can’t tell me, I’m failing to understand. I actually think the reason they can’t tell me is because it hasn’t been properly recorded in my notes or something.
They should be offering counselling to women who are struggling with their mental health having to go though this experience I think. My guess is that they probably did offer this prior to COVID, but this is another NHS service on its knees. At the very least however, they should have a member of staff calling women who have been waiting so long, just to check in with them to see that they are ok.
I’m sorry to hear that you’ve had a rough time of it too. You must’ve got quite a fright when it came back as CIN3. And to tell you by letter on NYE is pretty poor. I actually feel that any CIN3 result should be told at the very least over the phone and then confirmed by letter. Anyone receiving results like CIN3 will always have questions and will be looking for reassurance. I’m sorry that you were treated like this.
I was told “it’s fine” so many times by too many people it has completely unnerved me. Have a read back on some of my other posts to see my full story. No one will tell me anything. I was an urgent referral due to my results (high risk HPV moderate/severe cell changes). I received a call out of the blue asking me to attend colposcopy in a hospital mies away from me the next day. When I said I wouldn’t be able to make it, I was then offered an appointment at my local hospital the day after that. I didn’t even have my smear test results back yet. When I was at my appointment, I questioned if there was an urgency to my appointment and I was told that they must’ve had a cancellation or something. I later read online that this answer was bull sh*t and I would be on an urgent two week referral list. The only consolation I have if there is any is that I didn’t need to wait 7+ months like others have had to. The almost 8 week wait for my results were enough hell for me. I don’t know how they coped for so long. I literally counted the hours between the postman visiting in case he had anything for me.
I’m glad to hear that you’ve had your treatment and I have everything crossed that your post treatment smear comes back clear. I hope that your results come back quickly. The waiting is absolutely the worst part. The forum has been the best part of all of this. Although I would wish this experience on no one, I’m so glad that there are others out there to speak to that completely understand how I’m feeling. When I first wrote on here, I vowed to keep my thread updated, just in case some other poor soul finds it of any comfort.
The way I was treated by my receptionist still rattles me to this day. I get quite nervous calling to arrange my smear test and its a big thing for me to pluck up the courage and do it. My smear was initially due in March last year but was cancelled due to COVID. When cervical screening in Scotland was reinstated I received a letter telling me to call and book my smear. You would’ve thought I had made the letter up. I actually offered to bring the letter in for her to read but she was adamant that I hadn’t been sent a letter. When I got the final letter to say that they wouldn’t be sending me anymore letters as I hadn’t bothered arranging a smear it felt like such a smack in the face. It really angers me to think that my cell abnormalities could possibly have been picked up a lot earlier. And more worryingly is how many women like me received the same experience and never insisted on getting a smear test.
Keep me updated on your results. You’ll be in my thoughts. Also, if you need to talk to anyone, I’m here for you. Sending hugs xxx
Hello, apologies for taking a few days to get back to you. I read your message over the weekend and very much appreciated your thoughts. Especially as I know from all your comments about your personal situation, you’ve been through a similar Hell to me! I don’t think the length of time waited really matters if it’s shorter or longer than my wait, I think the mental toll is the same for many of us no matter what. Not helped by when you seek answers, you get roadblocks constantly.
I was really worried about the weekend just gone as prior to getting my appointment letter I had arranged to go see my parents in Yorkshire. I’d taken Monday off even though Scotland doesn’t officially get the late August Bank Holiday so my plan was to stay Friday-Monday. My husband drove us down on Friday night and it was actually fine. I’d spent most of Friday in bed anyway and my family knew I’d been told not to move very much for a couple of days. Was hard to explain to my 4 year old niece but she was happy to sit on the floor showing me her toys!
It was nice to see family to be honest as it took my mind off things a bit.
I spent most of the rest of the day of my procedure sitting on the sofa afterwards. I had a bit of pain (period style cramps) and knew I had to take something. I’m not good at swallowing large tablets so normally I have Nurofen Meltlets but my husband didn’t want me taking ibuprofen after an operation as it can thin your blood and that’s not good when you’re healing. He got me the paracetamol that you dissolve in water. It was disgusting but it did the trick.
The only thing I’m concerned about is I’ve had hardly any discharge. The way the consultant talked it was like water was going to be constant but I’ve been wearing liners and have had a faint small brown stain at most. Worried that everything is just staying up there! I had this after my biopsy too. Hardly anything, a bit of brown discharge for a day and then four days after I felt safe to initiate things with my husband…and then had pink discharge for a day after that. I’m now constantly scared of doing the wrong thing even if I wait for the times they gave me! I had a warm (not hot) bath five days after LLETZ and have spent the past couple of days worrying if I’ve given myself an infection even though there’s no symptoms.
Are you any further forward on your journey or is it just a case of them making you wait for your next appointment still? Hope you’re keeping well, all things considered x
