Im shaking typing this and feel so alone and tearful. My recent smear found high risk HPV and abnormal cells. I have been referred for a colposcopy. My appointment is the 23rd of Oct and Im terrified. I am a rape survivor who finds smear tests a huge ordeal. I feel violated with every one I have. However, Ive learnt coping techniques to stop my anxiety levels rising and my usual nurse is aware of my history. The last smear I had last about a minute start to finish and I know if it had been longer I would have had a panic attack, my heart was thumping and I wa sweating like mad.
Since getting this letter ive had two panic attacks mainly over the length of time the procedure is supposed to take - 15 mins aparently - I cant do it and know I will just freak seeing the chair, stirrups - I cried just looking at the pic here under colposcopy explained. I feel like such a baby and am trying to keep it all but I know Im on the edge. I will make a fool of myself I just know it. When I phoned the hospital for some reassurance the nurse tried to put my mind at rest by telling me I can watch what they are doing on a tv screen!!! Why???
The thought of laying on that bed/chair thing with a speculum inside me just fills me with absolute dread. Then to read other posts about biopsies, staining my cervix with dye something called LLETZ just adds to my anxiety. Im 43 and should know better, so why cant I do this???
The answer is I cant - Im not brave enough and know the hospital staff have no time for dealing with someone like me. Im scared....really really scared. Please help :-(
Oh dear me, you poor thing, sounds like you have had a very rough time, I'm really sorry to hear this. Your anxiety surrounding this is completely understandable. It sounds like you've done very well so far in finding some coping mechanisms to deal with your smears and it's nice that you have a lovely nurse who knows your history and must be very good.
There are a number of things perhaps you could think about. The main thing is, as you know, this needs to be done one way or another. I'm sure that, if you really felt as though you definitely could not get through it, which I want to keep reminding you is completely understandable, then perhaps you could request either sedation or even a general anaesthetic. I don't know what grade your cell changes are but if they are high grade (2 or 3) it is likely you will need treatment with a LLETZ which could be done there and then while you are sedated/asleep. I feel your circumstances could warrant this really as it sounds like it will be quite traumatic for you and I'm sure there are other ways around it.
Do you think your usual nurse could perhaps give the colposcopy clinic a call on your behalf and discuss the situation discreetly with them? That way you don't have to be telling strangers about your ordeal and they might be able to organise another way of doing this for you. Do you have someone who can come with you the appointment either way?
Please try not to beat yourself up about the fact that this is a huge source of anxiety for you, you have been through so much. I just hope that the team you are under can be sympathetic to your situation and offer you some other way through this. In the mean time, deep breaths & chin up. You will get through this one way or another and very soon it will all be in the past.
Hi! Belle has some great words there. I couldn't say anything more than I believe u are probably stronger than you think. Hopefully you can find some advice from belle helpful.
I'm so sorry you've had such an ordeal and can completely understand why you would feel like you do.
I think Belles advice is great.
I have seen on here some women are prescribed sedatives beforehand but their GP to help calm their nerves. They could maybe offer you this or something a little stronger.
If your GP knows your history, I'd ask her to call them for you and explain yor situation so something can be put in place.
I do have to say though I felt more at ease during my colposcopy than I did during smear. The staff were so friendly and chatted away to me all the way through. They really were lovely.
I don’t comment on here very often any more, but I simply could not read your post and not try and help. Ok, look, I was in the same situation as you are - and I mean the SAME situation (you see, you’re already braver than I am - you just came out and said it!) - and because of that, I was far more terrified about the procedure than about the possibility of having cancer. And I’d been getting symptoms of cervical cancer for a year, so I knew there was something wrong, but still didn’t want the procedure, which I think shows just how terrifying this kind of examination is when you’ve previously experienced sexual violence. I really want you to know that I COMPLETELY understand how you feel. You are not alone.
First of all, there are some things you need to know, and I want you to keep reading these back to yourself because they are important:
You are NOT being a baby. You have been through a terrifying trauma and with that in mind, there is no reason why this kind of medical procedure wouldn’t be a triggering situation for you.
You are brave. You have come onto this forum and just plainly said what has happened to you and what you’re frightened of. That’s brave. You’ve also managed to continue with your smear tests, despite your fear, which shows how brave you are and how much you want to look after yourself.
The hospital DO have time to deal with someone ‘like you’ and if they give the impression that they don’t, then shame on them and they should be pulled up on it. I promise you that you will not be the first person they have had in that room in your situation and you are worth their time and effort.
It’s not a question of “I should know better” or you making a fool of yourself - there is nothing you could do in there that would constitute you making a fool of yourself. I repeat: you’ve been through a terrifying trauma and it’s obvious that something like this would trigger it. Try and be kind and compassionate with yourself - I promise you that you’re worth it and that you deserve that kindness.
Ok, the procedure itself: there is no question that I found the colposcopy an ordeal and I don’t think there would be any point in trying to sugarcoat that for you. But here are some things that helped me and that I hope will help you:
You are in control of the situation. YOU. No one else. Not a nurse, not the doctor, not anyone else. Just you. It is YOUR body and you get to say what does or does not happen to it. The fact that this is a medical procedure does not change that. Try and keep this in mind at all times.
Talk to the team about your fears before the colposcopy. Generally, when you go into the room, they just have a little chat with you first. Take this opportunity to just be completely upfront with them. You don’t have to go into detail with them if you don’t want to, but a few well chosen words will make it obvious what you’re talking about - these are intelligent people. I was pretty blunt with my gynaecologist and said something like “Right, I need to talk to you. I have previously experienced an extremely traumatic situation which makes this procedure very frightening for me and I am far more anxious about the procedure itself than I am about the results. This is not the normal anxiety associated with this procedure - this is actual terror because of what I’ve previously been through.” I was very lucky because my gynaecologist was very understanding. He clearly told me that if I needed him to stop, all I needed to do was say so, and he’d stop. I did need to do this two or three times and he did stop when I said I needed him to. At one point he stopped for quite a few minutes and we had a chat about children’s picture books (I’ve previously done some illustration), which really helped because I could confirm in my mind that he was not the enemy. Also, I should tell you - once I was in the colposcopy chair I was shaking and it took me about ten minutes to actually be able to open my legs. This is fine though - don’t feel pressured to just get on with it, that won’t help you in the long run; do things at YOUR pace. Take the time that you need.
There are usually quite a few people in a colposcopy room (the consultant, a few nurses, sometimes a medical student) so I made it clear that I was not there for other people to learn - let them learn on someone who’s got less to deal with - my gynaecologist was the only one ‘down there’.
I can see from your post that the idea of watching the procedure on the TV filled you with horror, but I have to say that I did this and found it really helpful. This was a control thing. I could see what he was doing, therefore I knew he was doing exactly what he said he was doing and nothing else. Everyone is different though, so if you don’t think this would help you, don’t do it.
I took my husband with me. He is the person I trust most in the world and someone who I know would fight my corner if I’m not able to. He literally held my hand throughout the whole procedure and at the several points when I thought I was either going to have a panic attack or dissociate, I looked at him and he just very gently told me that I was completely safe. He did this over and over again and it really helped. I don’t know if you’ve got a partner, but I think it’s essential that you take someone with you that you trust, and it needs to be someone who is not intimidated by either medical procedures or authority and who will say what needs to be said if you get into a place emotionally where you’re not able to. Explain the situation to them, tell them in advance what YOU want to happen in the room and make sure they know that you are happy for them to speak up.
Finally, I think the thing that helped get me to the hospital more than anything else was bloody-mindedness. Here’s how I looked at it: “Yes, this is a terrifying situation for me, and we know why that is. But this procedure - as terrifying as it is - is not about humiliating or hurting me; it’s about protecting me and looking after me and keeping me healthy, even if it doesn’t feel like that. I have been hurt enough - I am not going to let THAT PERSON/PEOPLE stop me from looking after myself - I will NOT hide from the world and I will NOT let them have power over me anymore. F*** them and f*** their sick and sadistic ways. This is MY body and I’m looking after it.” Now, that doesn’t mean the colposcopy was any easier - it was really very very hard - but I did it, and I am glad I did it. I thought I wouldn’t be able to manage it, but I did it and I did it despite what has happened to me before, and I promise you that you can too - you ARE brave enough and you ARE strong enough and you are NOT alone.
With much love,
Annabel. x
ps: If you haven’t been in touch with them already, it might be worth giving Rape Crisis a call: http://www.rapecrisis.org.uk/
pps: If you think it would help, phone the hospital and ask if you can have a female gynaecologist.
I think Anabell has provided some great advice here to you. I'm saddened you both have had such an terrible experience, but pleased Annabel is able to share and advise you.
I think her closing points are so important. Don't let what someone else did to you stop you from taking care of yourself.
Hi Lily, its completely understandable that your scared n please don't feel bad about it. I like you went through this nightmare very recently, my smear came back high dys back in July when I'd been to my GP with depression due me being attacked while i slept at a friends house several years previously, 'd realised i needed help to be able to have a relationship, after many years of fooling myself that i was ok on my own. I wasn't as strong as you are and i'm 36 and only ever had 2 smear tests. When i was at uni i was drug raped n due to that i ended up dropping out of uni, n losing any hope i had of a decent career. I ran, hmmm think i'm good at that, but this is really something you can't run from. I never had a smear at all until i was 30 after i was attacked at a friends house, then my sisters friend got an abnormal smear and i was worried the man who attacked me had infected her so i went for a test that i found very very hard, it came back clear cos it was too soon, only 9 months after the attack. It was seven years till i had my next smear in July that came back high dys. I hadn't even had sex in over 5 years due to how i felt. My last relationship i had was when i was in coucilling for the rapes. I found the thought of the colposcopy very frightning due to what i've been through, i was sat in the waiting room just wanting to run away, but i kept myself together just thinking of my kids that need me, n i needed to get this sorted for them. I managed to keep it together for the start of the exam but by the end i really had had enough n just wanted the thing out of me, by the time they'd finished i was a shaking mess, i just sat in the chair crying n shaking till i managed to get myself back together. Then i just wanted to get out of there. Then i got the letter through saying i needed Lletz, n i was absolutely dreading it n going out of my mind with worry especially after the colposcopy. But i went for my kids because they need me, n i'm not gonna let that bastard kill me, he's done enough damage already. I managed to keep it together for the Lletz, i was very surprised how quick it was over then i just felt relief that it was done also the chair was different at the Lletz which i think helped because it wasn't normal stirrups, you placed your feet on a footrest so i didn't feel helpless, i could of moved if need be i think that really helped when i had the Lletz. I think your extremely brave that you've been for all your smears n found ways to cope and you will get through the colposcopy just remember that you are in control at all times. I'd ring the hospital and tell them how you feel especially if you would rather be under when they do the procedure, i never had that option because i fear anyone going there while i'm unconcious even more, in fact i think that i'd of refused to let them knock me out but luckily i was able to be awake. Definately take a close friend or partner with you that knows what you've been through who can help support you. You will get through this, just remember your doing this for you and the people you love n remember you are always in control lots of hugs sharon xxxxx
Ive just come back to check for replies and am truly overwhelmed reading through them all. In particular thank you so much annabel and sharon76. The adivce you have given has certainly made me think and given me great tips.bI am seeing my regular nurse thursday as I tried to ring the hospital lkast week and they havent replied.
I didnt sleep at all last night and, as usual when I did I woke having a panic attack. Like you annabel I am more scared about the procedure than the outcome, which is ridiculous I know. And then when I do consider the outcome and possible treatment I then go into meltdown.
Can I ask how long the whole thing took? Is that speculum really in for 15-20 mins? and does having the dye put on hurt?
I still feel extremely anxious but thank you for your support, Im humbled that you care so much x
Cant thank you enough for your post I appreciate your honesty and not sugarcoating anything despite it hard to read. Bless you for taking the time to reply x
my colposcopy took around 15 mins (including the dye and the biopsies). The dye very slightly stung but not painfully and it was only for a second. The biopsies literally take a split second to do each one and you feel a tiny pinch when it happens but again it's not painful as such - I had 2 taken and didn't feel the first one as they ask you to cough at the same time. I only felt the second one as I realised they were doing it then and really concentrated on it. I find the speculum really painful, even at my smears, so for me that was the worst bit by a long way. The staff were great though and at all of my appointments I have gone in alone but there has been a member of staff there whose sole job seems to be to hold my hand and make sure I'm ok and don't want to stop etc - I'm sure they have much more to do than that but that's how it came across to me! At a few points I asked them to stop for a second and they did, they don't make you feel like a pain or awkward or anything - they genuinely seem to want to make it as painless and stress free for you as possible.
I know you've mentioned the treatments aspect of it too so I just wanted to add that I have had the LLETZ under local anaesthetic which was about the same time wise and painless - i didn't feel the injections and the actual removal of the cells took seconds. I then had the cone under general which obviously is different as you don't have to go through any of the process consciously so feel nothing except a bit sore when you wake up.
At my colposcopy and my LLETZ I was told that if I preferred I could have the whole thing done under general anaesthic instead. If that is something you would prefer then it should be something that is available if you talk to them about it.
It's easier said than done, I know, but try to take this one step at a time - you won't be doing yourself any favours thinking about the possible outcome at this stage when the chances are you'll be fine and might not need any further treatment.
My colposcopy took about 20 mins, but that included the lletz/loop procedure, which not everyone has at the time of the colposcopy - it partly depends on what they can see and which health authority you're in. However, a lot of them do what mine did, which was to perform the lletz there and then, so that you don't have to have another colposcopy and to get it over and done with. In my case (and this is very common) the lletz acted as the biopsy. They give you a tiny injection (which I really thought I'd feel but didn't at all!) of local anaesthetic, so while you do feel that there is something going on there, I wouldn't really describe it as pain. Some bits - like when they actually do the lletz (which in itself only takes a minute) - are uncomfortable, but mostly it's just awareness that something is happening there, rather than feeling pain. The speculum is in for the whole time (which was something I was worried about too) but it might help you to know that for me, it didn't feel anything like a smear test. You know when you have a smear test and you can really feel the speculum there? Well it didn't feel like that at all - once it was in, I couldn't really feel it after that - I think that was a combination of the slightly different position of my body from a smear test, and the local anaesthetic. The reason they use the speculum is so they can properly see the area, so they can be really super-accurate with what they're doing. To answer your question about the dye: no, that doesn't hurt at all. If you gently squirt some water on your cheek, that is probably a good representation of what it feels like, actually!
I don't think it is ridiculous that you are more scared about the procedure than the result - I completely understand that and that's exactly how I felt as well - if anything, I think it shows the level of fear that having past experiences such as ours can create and how powerful that can be. However, we are not defined by either that experience or that fear and you have shown considerable strength and fortitude by talking about it and by wanting to deal with your fear. I have no doubt whatsoever that you CAN do this.
Take things one day at a time and know that I am thinking of you. x
I obviously cannot add anything to the fantastic advice and support from the above comments. I am sorry that so many of you have suffered the terrible ordeals and had to then have this on top. It humbles me really. I just wanted to add a comment to acknowledge your post and to offer my love and hugs and to say your very brave to even have smears at all from the sounds of it. Take care lovely....definitely discuss your concerns with the hospital before your treatment, you deserve the best treatment and care and I hope they are able to offer a way through this that you can cope with.
Hi Lily, i have to say that unlike Annabel i could definately feel the speculum when i had both my colposcopy n biopsies and when i had my Lletz, in my colposcopy it took 3 attempts for them to find the right size speculum but i could still feel it and was very aware it was there in both procedures, this is probably not want you want to hear but i didn't want to lie to you. My colposcopy n biopsies lasted alot longer than my Lletz procedure, i felt helpless in the chair cos it was the one with the styrrups were you can't move, i managed to keep it together at the start but the nurses did comment on the fact i was very jumpy before they even inserted the speculum, i must admit it did help abit being able to see the screen n what they were doing, it was abit of a distraction. I had lost it by the end of the procedure i'd really had enough and just wanted that thing out of me. Also all the tools that they used to do my numerous biopsies made me feel physically sick, all in all it lasted about 25 minuites but that was because of all the biopsies i had, n one of the nurses had to leave to get more pots for the biopsies. I had really had enough by the end of it. Surprisingly i found the Lletz a hell of alot easier, that only lasted about 10 minuites, they still had problems finding the right size speculum, but it was over alot quicker n was a different chair were you support your feet so i didn't feel helpless which i think really helped. There also wasn't the sight of all the tools because there was only the Lletz machine, it was so quick when they actually started the Lletz that i actually managed to keep it together for the whole procedure. I couldn't believe they'd done after my nightmare of a first colposcopy. I would definately ring the colposcopy department and talk to them about having treatment there and then because you will find it much much easier than having to have biopsies taken as well, you should speak to your nurse the next time you see her because i'm sure she'd be able to talk to the colposcopy unit for you. I'd also seriously think about asking to have it under general anethetic if that would be easier for you. I think your extremely brave and have been for all your smears and you will get through this, just remember your in control and are doing this for you and the ones you love lots of hugs Sharon xxx
Hi sharon your post rang true with me - every time I go for a smear test the speculum she uses is the smallest they have - I cannot bear it being inside me depsite her being so kind and caring. I know I suffer from anxiety as far as this examination is concerned and can only bear it inside me for about a minute. I really cannot see me enduring that for 15 to 20 without being drunk or hit over the head with a mallet!
The chair and stirrups seems to be an enormous trigger for me right now and Im having weird dreams concerning it. I have no idea how Ill even allow myself to "sit" in it. My nurse knows now not to ask me to undress - I just do it of my own accord while we are talking. She knows you see. I have to lie there arfter a routine smear for my heart rate to go down before I can even stand up and my legs shake uncontrollably. I have no idea how I will cope. Everyone tells me you have to have this done - think of your children - but my weird head just computes that as being cornered. I have to have it done therfore I have no say - it messes with my head. Logic doesnt enter into it.
In short I feel a mess - Ive just given up smoking because of all this, to help myslef but find Im craving so much cos Im stressed. I havent slept for three days now but Im hoping the large glass of wine Ive just drunk will help.
The wait is torturous and then to think that should this procedure even take place Ill have to wait weeks to find out results is just awful.
Ive never felt so low in my life
21.05.13 routine smear showed insufficient cells
05.09.13 repeat smear shows abnormalities and high risk HPV + candida infection
Oh Lily, what a terrible place you're in at the moment. I know the waiting is not helping to settle your mind one bit.
While I haven't been in your situation, I was extremely anxious about my colposcopy and worked it up in my head to be much more difficult than it was. A lot of heavy breathing and talking absolutely rubbish to the nurse just to keep my mind off it, all the while holding back the tears. Then they mentioned a biopsy and the tears started flowing and I gripped the seat, almost ready to jump out of the chair. But then suddenly I realised it was all done and dusted, without me feeling anything like I had expected. The 10 mins in the chair does not drag, its over very quickly.
While this may be more difficult for you considering what you have been through, what I'm trying to say is so much of the anxiety is just built up in our heads. I used to suffer from severe anxiety and found even 2 sessions of hynotism helped, he didn't hynotise me as such, he just showed me very practical ways to relax my mind. Perhaps something like this could help you over the coming few weeks. Mind over matter techniques can really help in these situations. You've had two smears already, I can honestly say a colposcopy is not much worse, and does not feel much longer. You CAN do this. You really can. That horror situation you see in your head is not the reality. I hope the next few weeks go very fast for you xxxxx
Hi again everyone - just thought I'd update you all
I went to see the GP practice nurse today having had another panic attack last night (I wake up having them) and about two hours sleep. She was amazing - I had a meltdown. After the next panic attack had subsided she rang the hospital there n then on my behalf. I now have a lady gyneacologist not a man and the appointment time is there last appointment for the mroning which means there is no one waiting after me to go in and no time pressure. She also suggested I take my iPhone n listen to my music while they do it - which I thought was a great idea.
She has also prescribed me diazepam to take in the eamntime and for me to double the dose in the morning of the 23rd to help me relax.
THE most amazing thing she is trying to do though is that she is going to try n arrange to have the morning off and actually come with me - I was overwhelmed by her concern. If she cannot come then my friend is going to be on standby.
I do feel so much calmer now and have started taking multi vitamins and enchinacea (sp?) to boost my immune system. Ive also joined a stop smoking programme with Boots - which for me is free.
I feel Im back in control now - at least for the next two weeks anyway. I stil dont know how Im going to make it from fully clothed to in that chair with that thing inside me - it fills me with dread but thats in two weeks time. I'll cross that bridge later.....
Thanks ladies so much for your help advice and support. Im sure nearer the time your support will become invaluable.
Good luck n take care
Lily x
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21.05.13 routine smear showed insufficient cells
05.09.13 repeat smear shows abnormalities and high risk HPV + candida infection
23.10.13 scheduled colposcopy exam - time now changed to 12 noon
Wow, your nurse sounds amazing. I'm so pleased that you feel a bit better about this now and that the health professionals are doing everything they can to make this a better experience for you. Good luck. You can do this! And we are all here to support you.
Also well done on stopping smoking! Again you can also do this! I had my last ciggie nearly 4 months ago. And whilst there were times it was really difficult and I was really grumpy lol its the best thing I have done for myself!
