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Embarrassment isn’t the only reason some women fear smear tests, and we need to stop pretending it is

Earlier this year, I was approached by a national charity who wanted to me to take part in a campaign designed to encourage women to attend smear tests.

I said no.

Why?

Well, it wasn’t because I don’t believe smear tests are important, or that I don’t want to encourage women to attend them, let me just get that out of the way upfront.

BUT.

While I absolutely agree that smear tests should be talked about, the WAY in which they’re currently being talked about is not in the least bit helpful for me. In particular, I have a problem with the oft-cited idea that the only possible reason a woman might have for either delaying a smear test, or failing to attend altogether, is simple embarrassment: that we’re all just silly girls who care more about the state of our Brazilian wax (or lack thereof) than our health.

I, for instance, am not in the least embarrassed by smear tests. I mean, sure, there are approximately eleventy-one thousand things I’d rather be doing on a Tuesday morning, and I think that’s probably true for everyone. I have, however, always managed to be fairly pragmatic about this kind of thing: I know the nurses who take my smear test are simply doing their job, and that they’ve seen it all before. I know they don’t care if I’ve waxed, or what kind of underwear I’m wearing. What’s more, the ones I’ve dealt with have all gone out of their way to make me comfortable, and put me at ease, so it isn’t embarrassment that makes me shake with terror on my way to every single appointment: if only it were that simple.

Here’s what DOES put off:

Smear tests can be painful.

We’re not allowed to admit that, though. In fact, all of the currently publicity surrounding the importance of smear tests totally ignores the fact that for some women (Obviously not for all women), they can be painful. Every single campaign I’ve ever seen on this topic – including the one I was asked to participate in – heavily pushes the idea that smear tests are simple, easy, and not in the least bit painful. That’s what the charity who approached me wanted me to tell you, and that’s one of the reasons I couldn’t do it: because, for me, – and for many women like me – that’s just not true.

I have always found smear tests painful: not to the point where I’ll avoid having them altogether, but certainly to the point where I dread each one, and have to talk myself into attending. There is no medical reason why this should be the case: for many women, smear tests really are easy and pain-free – it’s just not that way for me, unfortunately.

And I’m not the only one, either.

When I brought it up at my last smear test, the nurse simply shrugged sympathetically and told me that’s just how it is for some of us. On Facebook a few weeks ago, a friend started a thread asking if she really was the only woman out there who found smears painful – which is how the current round of publicity had made her feel. The answer was a resounding “no”: dozens of women responded to say that they, too, had had the same experience – and that they, too, had assumed they must be the only ones.

It is a fact that some women find smear tests painful: and it enrages me that this simple fact is so often ignored, or even outright denied, by those who wish to push the narrative that there is literally NO good reason to feel even the slightest bit apprehensive about them, because the test is ALWAYS quick, ALWAYS easy, ALWAYS pain free.

I can’t promise you that, though. I mean, I would love to be able to do my bit to reduce cervical cancer rates, but I’m not willing to lie or mislead people to do it. So I will encourage you all to have smear tests when you’re invited for them, but what I can’t – and won’t – do is tell you it’ll be easy.

I will encourage you all to have smear tests when you’re invited for them, but what I can’t – and won’t – do is tell you it’ll be easy.

And, I mean, it MIGHT be. For some women – maybe even for MANY women – having a smear test really is no big deal. It’s simple, straightforward, pain-free, and takes just a few minutes of your time, after which you can just go about your day as if nothing happened.

It’s not like that for me, though.

Because, the fact is, I suffer from severe health anxiety.

And, right now, I’m 3 weeks into what I’m told is likely to be an 8 week wait for the results of my most recent smear test.

Eight. Weeks.

If you’ve never experienced health anxiety – or, indeed, generalised anxiety, which I ALSO have – you can’t possibly understand what that kind of wait is like for me. In fact, you’re probably just rolling your eyes as you read this, thinking, “Eight weeks is nothing – you should just be grateful you get to have this test at all.”

I got that exact reaction (Although not in those exact words) from someone I tried to speak to about this earlier this week, and it made me feel so silly that I actually deleted this post (Which I’d already started writing at the time), worried that it would just garner the same, dismissive reactions. And, of course, I AM grateful that I’m one of the lucky ones who gets to have this kind of life-saving screening: I wouldn’t want to imply otherwise, and I certainly wouldn’t want to be seen to be scaremongering, or encouraging women not to have smears. So I sent the post to the trash folder, having decided that I just didn’t want to be the lone voice on the internet piping up to say, “Actually, I DO ‘fear the smear’ – and all of these lipstick smeared selfies talking about how it’s totally not a big deal, and is super-easy for everyone, have just made me feel like a complete freak for being scared of it, thanks.”

But then I cried all morning. And most of the next day. Because, the thing is, smear tests are vitally important, yes – but mental health is pretty important, too: and right now, mine is absolutely shot to hell. Every single morning during this 8 week wait, I get up early to feed the baby, and then I sit on the edge of the couch, my stomach churning with nerves, as I wait for the post to arrive. When I hear it drop through the letterbox, I literally (LITERALLY. IN THE LITERAL SENSE OF THAT WORD.) feel like I’m going to throw up.

smear tests are vitally important, yes – but mental health is pretty important, too:

Part of me desperately wants that brown envelope with the results to arrive, just so the wait will finally be over. The rest of me, however, has been living in fear of that moment for months now: ever since Max was born, in fact, and I knew that this smear test was the next big health-related hurdle I’d have to clear.

I think it’s great that women are being encouraged to attend smears, but I also think the reasons many women DON’T attend smears are very valid, and that, rather than just saying, “You should go for your smear, it’ll be totally easy!” (When, in fact, the truth is that it might not be…) the health service could maybe think more about what they could do to remove those obstacles and actually MAKE it easier.

Instead, a lot of the current campaigning seems to just minimise and dismiss what can be paralysing fears for some people, and it’s left me feeling like a bit of a freak, wondering why I – and I alone, if the current publicity is to be believed – am not in and out of the nurse’s office in two minutes flat (Both of my last tests have taken a good 20 minutes, while the nurse tried various different speculums, and I lay there in a cold sweat, wishing I was absolutely ANYWHERE else…), and then getting on with my life without a care in the world.

It just isn’t like that for me.

Instead, I’ve spent the last three weeks becoming increasingly more anxious, as I wait for the results of that test. Now, I know perfectly well that even if my smear test IS abnormal, it will not necessarily mean I have cancer. I know it could just mean that I’ll require further monitoring, or treatment to get rid of the suspect cells, and that the detection and treatment of those cells could, very well, save my life. I know all that.

The thing is, though, knowing that doesn’t reduce my anxiety, because, for me, “further monitoring” would mean a continuation of the absolute hell I’m currently enduring, while I wait to find out if there’s something wrong. It would mean, at the very least, another smear test – and given that I had to spend literally MONTHS psyching myself up for the last one, and returned home in tears after it, that’s not exactly No Biggie for me. As for the treatment to REMOVE any suspect cells, meanwhile… well, all I say here is that, again, if you’ve ever dealt with health-related anxiety, you’ll know why the very thought of that has been keeping me up at night for weeks now, and why I honestly don’t know how I’d cope with it.

(If you don’t have health anxiety, meanwhile – or, you know, empathy – you’re probably too busy typing out a suitably cutting response to the start of this post to have even read this far anyway, huh?)

Here’s the thing that no one ever understands: I’m actually not afraid that I’m going to die of cervical cancer (Well, I mean, I AM, but no more than I’m worried about dying of any other form of cancer…). No, I’m worried that if the result is abnormal or inconclusive, I’ll have to continue feeling the way I do now for another few months, while I go through more testing, and more waiting for results, always with the fear that it really WILL turn out to be something serious hanging over me.

The only thing to fear is fear itself, right?

And that’s the crux of it, really: I fear fear. And, having been living with it for almost two years now, from miscarriage and ectopic pregnancy, to childbirth and recovery, I’m really freaking done with fear now. I just want my life back – and, as strange as it might seem, I feel like this test is the last remaining obstacle standing in my way. If I can just get past it, I’ll be able to be me again, for the first time in months: and I’ll finally be able to start enjoying life as a mother, without this constant dark cloud of worry hanging over me. If I CAN’T get past it, though, and this test ends up leading to more tests, and more waiting … well, I honestly don’t know how I’ll cope.

To answer the obvious questions: yes, I’ve had counselling. I’ve tried medication. (Albeit only briefly: both of the psychiatrists I’ve seen feel – and I agree – that medication probably wouldn’t be a great way to treat my specific anxiety, because the side effects it can cause would likely just trigger a whole new set of fears…) I’ve made plans to go private next time, if only to minimise the wait time. (Last time my results only took 2 weeks with the NHS, so I assumed it would be the same again: I won’t make that mistake twice…) What I’ve learned from all of this, though, is that the only thing that actually works, and that helps me deal with my health anxiety, is to get concrete reassurance about whatever it is that’s worrying me. There’s no amount of mindfulness, or self-help books, or even Valium that will help me when the anxiety is at its worse: the ONLY thing that does help is being given proof that there’s really nothing to worry about.

And that’s why I’ve never missed a smear test – and, in some cases, have actually gone in early – even although I know that having one will effectively wipe out the next few weeks of my life. I still go – and I encourage other women to go, too – because I know it’s important, and also because I know that NOT going isn’t going to make me feel any better. No, if I didn’t go for my smear test when the time came, I’d STILL be stressed and anxious – the only difference is that THAT anxiety wouldn’t just last six weeks, or a few months: it would go on indefinitely, because I’d have no way of knowing whether or not my fears were actually justified.

It’s really easy to say, “Oh, it doesn’t matter if it makes you anxious, you just have to deal with it,” or words to that effect, but while I obviously DO “just deal with it,” and would never allow my anxiety to prevent me having screening, I also think that mental health DOES matter – and matters quite a lot, actually. And yes, I’d obviously – OBVIOUSLY – rather have 8 weeks of anxiety now, than end up with a disease that could easily have been prevented: that goes without saying, and I can’t stress enough how important it is to go for the screening anyway, even if it scares the bejesus out of you. (I have a feeling that people are going to want to respond to this post by saying, “Well, I’d rather have a few weeks/months of anxiety than have cervical cancer!” And I mean, yeah, so would I – which is why I always go for my smear. But just because cervical cancer is bad, it doesn’t mean that crippling anxiety is therefore good – you know? It’s preferable, yes – but it’s still debilitating and awful, and I guess that’s all I’m trying to say, here.) But these 8 weeks of anxiety – and potentially longer, should my results be abnormal – are also having a pretty negative effect on my health right now, and I know I’m not the only one who feels like that, because when I posted about my anxiety about smear tests on Instagram Stories this week, I got tons of kind messages from people saying, “Yeah, I feel exactly the same about it: write the damn post!”

So I’m writing the damn post.

I’m used to getting dismissive, and even sneery, responses when I try to talk to people about my health anxiety, and, in the past I’ve often allowed those responses to silence me, or shame me into thinking my feelings aren’t valid or important. Today, though, I’m digging this post out of the trash folder and hitting publish on it anyway, because if those responses have taught me anything, it’s that we need to talk MORE about mental health issues, not less. There’s still a huge stigma about anxiety: it’s still not taken seriously by some people, despite the massive impact it can have on the lives of those of us who suffer from it. And while I agree that we should be talking more about smear tests, and encouraging women to attend them, I also feel we should be talking about them HONESTLY, and not just pretending they’re a walk in the park, or shutting down those who are really frightened of either the procedure itself, or the potential result.

So, my name’s Amber, and I’ve been awake since 4:30am this morning, worrying that today might be the day I get those long-awaited results in the mail.

It wasn’t. Which means I’ll probably be awake at the same time tomorrow – and for three more weeks after that. I go through this every three years, and I want to talk about it honestly, because I know some of you do, too – and if you’re also going to be lying awake tonight, worrying about those results, maybe it’ll help you to know you’re not the only one.

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COMMENTS
  • It’s cool of you to share! I sometimes feel like a child (I’m in my 30s!) because of my relationship to all things health… especially this one!

    I am SO glad it’s not just me!

    April 20, 2018
  • Thank you for writing this; it’s a necessary voice that points out that smear tests aren’t easy and simple for everyone, but doesn’t diminish the necessity of them.

    I put my first smear off for years with my GP’s support. She basically said that for me, with my level of HA, she considered it riskier for me to have a smear test at that point in time. Eventually I got to the point where I started to become terrified about NOT having one, so off I went, three years later than you’re meant to have your first. The next fortnight was literal hell on earth waiting for the results.

    That was two and a half years ago, and literally one of my first thoughts on New Year’s Eve was that I’d have to go through a smear again in 2018. Health anxiety really can dominate the mind that much, which I think is something most people just don’t understand.

    I really hope your results come soon.

    (Sidenote: I really wish there was a system where you got your results at a specific time, rather than just having to wait for a letter or a phone call. So much of the focus is on alleviating fears of the test itself — which is completely necessary! — but it’s not just women with HA who are put off the idea because of the uncertain waiting period.)

    April 20, 2018
      • I didn’t want to elaborate too much initially, but just a follow-up that I thought worth mentioning given your response.

        My GP actually suggested to me that I not have the screening. I was completely shocked, as I’d been ready to just tough it out. She explained a lot about the potential downsides of cervical smears, which I see others in the comments have mentioned, but there was a particular point she brought up with reference to me specifically (and by extension, I assume it’d apply to you). She was of the opinion that smears are useful, but she strongly believes anyone with severe HA would NEVER miss the signs of cancer or ignore them, as can happen in the general population. She told me that she fully believed I’d be aware of an issue before a smear could be.

        Obviously I chose to eventually have a smear for concern over those “what ifs” that HA just loves to throw around, but I thought that she had a really valid point. People with HA are already hyper-sensitive to our bodies and as horrific as that is, in terms of early diagnosis, it might actually be kinda helpful.

        April 20, 2018
  • Amazing post! I’m one of the lucky ones, in that having a smear, for me, is a minor inconvenience causing a bit of discomfort but that’s about it. Not everyone feels this way though and your feelings are absolutely valid and important. Anxiety is not fun.

    Keeping my fingers crossed you get your results as quickly as possible x

    April 20, 2018
    • Myra Boyle

      REPLY

      That’s a really good controversial idea

      April 20, 2018
  • Daisy

    REPLY

    I put my first smear off (aged 21, at the time when Wales was testing younger people) because I was busy and then I moved to England for a year, and when I got around to it I was 23. It was significantly abnormal. I don’t have health anxiety, but didn’t exactly enjoy what followed. I won’t go into too much detail as I don’t want to trigger anyone. During my biopsy I was so anxious that, when it was decided I needed treatment, they recommended a general anaesthetic instead of the usual local. With A LOT of valium (and I had to change GPs in order to get this, as my original one didn’t appreciate the severity of my anxiety), I managed to have treatment under local. I needed valium for check ups for a long time after (which is very frequent when you’ve had treatment), but the important part is that I didn’t get cancer, I got through it, and after a few years I could cope having smears without taking valium. I always mention that I get anxious etc. and find healthcare staff are understanding and caring.

    So I agree with you, smears aren’t always easy – and for me it’s painful too – but it’s still important!

    April 20, 2018
  • I have a close friend with your level of HA, and your posts have really helped me understand what she must be going through. So thank you for raising my level of empathy. I do think it’s important to talk about mental health issues more.

    And even though I’m one of the women who finds smears relatively easy, it is still invasive, uncomfortable and occasionally painful. No point pretending otherwise.

    April 20, 2018
  • Thanks for this post. I don’t have HA, but both my last two smears have been difficult, time-consuming and very painful indeed. I absolutely think it’s an important thing to do, but I worry that dismissing the fact that women aren’t going for their smears as simply due to embarrassment as being overly simplistic.

    April 20, 2018
  • EffEm

    REPLY

    I think you’re pretty damn tough to have forced yourself to attend all of your appointments, despite the huge mental anguish that it causes. This is major insight, as I am sure your psychiatrist would agree. (And I am not being sarcastic – my husband is a psychiatrist.)

    I hope your results are not only conclusively positively conclusive, but also bloody fast to arrive.

    April 20, 2018
  • I’m totally the same with health anxiety. Even a week-long wait is hell enough!
    I had a breast cancer scare and it took 2 months from first notice of a lump until I was cleared, and it was utterly terrifying. By the time the two months had rolled around, I’d kind of already made my peace with imminent death.
    Debs @ https://tiger-mint.com

    April 20, 2018
  • I just find it so nuts that in this day and age where we are talking about artificial intelligence and driverless cars and the like, we can’t make these things easier. I’m sure it probably comes down to budgets and such, but surely a digital system would save so much time, money and anxiety! All that’s paper pushing must be such a drain on resources! Anyway, great post Amber, thanks for sharing. People are so quick to assume that everyone thinks the same way they do. Dismissing people’s fears and concerns as silly just has the opposite effect! Whenever someone does that to me it makes me even less likely to do whatever it is that’s scaring me, because it makes me feel like I must be a ridiculous human if I can’t do this tiny simple thing that everyone else can – it makes the task become even more unacheivable than before! Why do people still not see that shaming people is not the way to change their mindset?

    April 20, 2018
  • thoroughlymodernretro

    REPLY

    Well done on putting this post up. Your HA makes what all the campaigns are saying is an easy test a nightmarish experience, and the potentially less empathetic responses do not help with that. Also, I don’t have HA but I dread my smears because I’ve never found them to be anything but uncomfortable (and sometimes even a little painful), so those campaigns are not the most helpful for all women (discourse is great, don’t get me wrong, but as evidenced by your obscenely long wait for results, there are still areas that need to be addressed). Also, I’m sorry people have given you less than empathetic responses to your HA. I work in the field of mental health and it infuriates me to see people dismiss anxiety (of any description) when it can be so crippling and debilitating for sufferers. Personally, I think you are far braver than you perceive yourself to be, because you still attend those appointments despite knowing the all-encompassing fear and anxiety it will result in. There is nothing brave about doing something that doesn’t scare you. But feeling the fear and doing it anyway? That’s brave.

    April 20, 2018
  • Erin

    REPLY

    I honestly have no clue if this helps, but I also have anxiety (just not health related) and my go-to try to feel OK move is trying to constantly remind myself that things are absolutely beyond my control. Like in this case you can’t change the amount of time it will take and make it speed up, and you can’t change the results whatever they are, so maybe living in the ignorance is bliss stage and trying to embrace it knowing there is literally nothing you can do to change anything or make anything happen at this point? Sorry, I’m sure you’ve tried this 5 million different ways, but it’s the only way that I’m able to grab onto some piece of control when I’m anxious or worried. Kind of a “Fuck you smear test, I’m not going to let you ruin the next 3 (to 5) weeks with your delay! I am LIVING MY BEST LIFE!” Yeah – this is probably stupid, but I think it’s good that you write these kind of posts. I’m sure they help a lot of people feel less alone <3 I hope it comes more quickly than they say.

    April 20, 2018
  • Ali

    REPLY

    This is actually a major downside to screening programmes – they cause anxiety, and make healthy people into “patients” even for those who don’t have health anxiety.

    I won’t go into the details of the figures, the pros and cons of screening etc, as I am sure that would only cause more worry! But this is a very definite downside that really isn’t adequately considered.

    I don’t like those campaigns either – not only is attending for a smear not easy for everyone, people also have their own reasons for not going. Your friend who doesn’t go might never have had sex yet not want to tell everyone that, for example.

    April 20, 2018
    • Sarah

      REPLY

      Ali, completely agree with you. I’ve hesitated about posting as I’m one of those who has decided that it isn’t for me. They don’t adequately deal with the downsides of screening and the chat about it is always ‘it might save your life’. Maybe it would, but I’m also happy to check out my own risk profile and come to my own conclusion that the risks associated with not screening (for me) are lower than those associated with it. I also suffer from general anxiety (and an undiagnosed element around medical stuff) and this subject has caused me quite a lot of stress since I received my first letter about testing over 17 years ago. I wish there was more support out there for everyone to make their own personal choice without being made to feel bad either way.

      Amber, I really hope the postie brings that brown envelope tomorrow. Xx

      April 20, 2018
        • Sarah

          REPLY

          Dr Margaret McCartney (a GP in Glasgow) is a proponent of evidence-based medicine and she’s written several books, one of which covers discussion about screening. I haven’t read the full book but I’ve seen the relevant excerpt posted online on a forum. She’s also on Twitter (I think she also has a blog) and writes articles for newspapers – looking up what she has to say is a good place to start.

          It’s a tricky subject. There’s lots of emotion involved and a lot of peer pressure from women who feel they’re doing the right thing encouraging others (I don’t mean your post above – completely understand your wording!).

          April 21, 2018
    • Claire

      REPLY

      I too felt completely alone in this and am so grateful to you for speaking up on this. I’m over a year late having a smear test, after the last time being such a horrific experience, I found it so painful and distressing. The nurse even lost her patience with me eventually, which didn’t help.
      But you’re right, it is important and not something that should be put off and I will book an appointment very soon.
      Has anyone found anything that helps with the experience? I’ve been told breathing exercises, meditation, even hypnosis (which I thought was going a bit far but maybe now I’d be open to it).
      Good luck with your results Amber!!

      March 8, 2020
  • What a great post! It really bothers me how dismissive health systems can be of women’s feelings about our own health. Whether it is something that specifically has to do with traditionally female reproductive systems (like smear tests) or health in general (ignoring complaints of pain/discomfort because we are “overreacting”) it drives me bonkers. I appreciate the way you speak so honestly about physical and mental health topics. I think we need more of these conversations.
    Also, I totally agree that smear tests are necessary, but there is nothing easy about having a virtual stranger all up in your bits.

    April 20, 2018
  • Amber, I feel your pain. I had problems four years ago at my GP’s in London and they very kindly referred me to King’s College Hospital which was absolutely fine. It’s four years on now and I’m in the same boat, this time I’ve been given the number of a clinic in Glasgow to go to instead of my doctor (or following my doctor). Can you ask for a referral to your local hospital for the test in future?

    I know mine will soon be done, but that doesn’t help my unease about the process now. I also know I should bloody well go because a very bad cold I had last year made me lose my voice and have surgery. Which revealed bad cells – not cancerous cells, I stress, but ones that the doctors took the decision to treat. So as I type I’m a third of the way through radiotherapy treatment. And while I’m not suffering, am keeping active, etc, it’s not the most pleasant process to go through.

    Strangely enough, although I wasn’t best pleased to hear the ENT surgeon say she’d detected some abnormal cells which the pathologist wanted a closer look at, I wasn’t actually that worried when she explained the situation. My blood ran cold, however, when I found out I needed a general anaesthetic. And it didn’t matter how many (non-medical) people told me I’d be okay, i was still going to be the 0.01% of people who woke up in the middle of surgery (I didn’t and never have!).

    I was unfortunate with my vocal chords and didn’t see the problem coming, so I really should make sure I book that smear test as that’s something I can do something about now.

    Fingers crossed for you – it’ll be fine and then you can get on with taking Max out and about.

    April 20, 2018
  • Laura

    REPLY

    Hi amber, as a fellow health anxiety victim and mummy of a 5 month old baby boy, I completely understand. It’s. comforting for me to read an account of someone who suffers in the same way I do. Thank you 🙂 Laura x

    April 20, 2018
  • Deirdre

    REPLY

    I hope you get the puffs plus with the lotion tissues. If you are scared you are scared. And if you need to cry you just do. And it is very brave of you to write about it. It’s a long wait. I don’t know if tension tamer tea or a mantra will help you for a minute or two or not..

    April 20, 2018
  • Myra Boyle

    REPLY

    I spent years of my life being terrified of cancer after reading a book about it by a very worthy author. I won’t tell you what it was as I don’t want anyone else having the same reaction. I wore a bra to bed for years so I wouldn’t feel the lump I knew was there in my breast. After about three years I had the blocked milk duct removed, but I was so scared before the surgery I told Raymond I would probably die on the operating table of a heart attack. I didn’t, obviously.
    The anxiety and outright fear didn’t stop there though and I was terrified I had all sorts of forms of cancer. I wasted about twenty years of my life in fear, until one day I realised that actual cancer couldn’t be worse that the fear I had of it. The anxiety didn’t stop immediately, but it did gradually ease off, and I had more and more days when I didn’t think of cancer. I hope that you too find a way to reduce your anxiety, and fear and hope you don’t waste as much of your life in fear.

    April 20, 2018
  • Yes! I don’t have health anxiety, but I’ve had (bearing in mind I’ve been having them since I was 18 because that used to be when they started, and I’m now 39) a LOT of just-tolerable smear tests, one during which I lay there rigid, not wanting to burst into tears and scream, “Get it out! Get it out!” and one – the one I’ve had since squeezing a baby through there – which really WAS so incredibly easy I barely felt it (thanks, shot-to-crap pelvic floor!). I can vouch for there being a HUGE range of smear test experiences and I know that some of them are easy and some of them are awful. I totally agree that the phrasing of the current campaigns can be unhelpful. I also totally agree that smear tests are vitally important.

    April 20, 2018
  • It is very important to talk about every side of it, and I bet many people with health anxiety will relate to this article much more than they do to the other campaign. Oh, on a side note: In Germany we have it every year, not every three.

    April 20, 2018
  • Emily

    REPLY

    Hey Amber – I’m a long time reader and I work in public health. Though this isn’t the area that I specifically work in, I’m always interested in how best to communicate often complex health based situations/needs to people with a huge range of different needs. You mention several times that you wish the health service would communicate better the reality of smear testing and the process. Do you have any specific ideas on this? I actually really love what someone mentions further up about a defined time to get results rather than waiting on an envelope. Anything on the pre-info stage? I’m just interested in what could make this easier for someone with HA (though of course I’m not suggesting all are equal!)

    April 20, 2018
  • Anna

    REPLY

    I’m glad you made this post. When I was 18, I had my first smear, and I was completely unprepared for the experience. I’d been told many times how completely easy, painless, and non-scary it was. For me, smears tend to be over in a few minutes, but they’re extremely physically painful and the pain often lasts for a few hours afterward. I felt like a freak for crying in pain from something I’d been repeatedly told was totally painless for everyone. I also wasn’t prepared for how anxious and scared I’d be when I got a call a few weeks later saying they’d found “something abnormal”. Fortunately, it didn’t turn out to be anything life-threatening, but smears have always been anything but painless for me, and I might have handled my first smear a lot better had I know that it’s NOT actually easy for everyone.

    April 20, 2018
    • T

      REPLY

      Hi Anna,
      I just posted downthread but just wanted to reply to you specifically to say I also found my smear incredibly painful. While I don’t think this is super common, it’s also not a rare freak occurrence and I wish there was more acknowledgement of that.
      T

      August 17, 2018
  • Nita

    REPLY

    I’m so glad you did go ahead and publish the article! I don’t have health anxiety, but can totally relate to how you feel when waiting on results. I’m one of those people for whom smear tests are relatively easy and painless (it helps that my doctors/nurses have all been rather nice) but at my last one it looked like I had some kind of infection, and ABSOLUTELY the WORST thing about it was the wait to try and find out what the issue was! Between the first smear being inconclusive and having to go for another, getting the second test, trying a treatment, waiting for results, going back in to see if the treatment worked, getting more tests and treatments and the hassle of trying to book an appointment at a doctor with quite limited opening days/hours – I only had 3 doctor’s appointments total over about 3 months, but it felt like it went on forever and the worst bit was worrying about what it was and not knowing, and my mind coming up with all sorts of possibilities. Thank goodness it turned out to just be a benign condition in the end, but I really wish I’d been able to have the whole process just go a lot quicker and have more communication with the doctor, it would have saved me so much worrying.

    April 21, 2018
  • Pat

    REPLY

    A few days before you posted this, my little granddaughter spotted the breast screening unit in the supermarket car park. She asked me what it was for, and I tried to explain in terms she would understand. I tried to put the emphasis on “importance” rather than “easy”. I think that if you tell people ( children and grow ups) that something is easy, and then it’s not, the next step into the unknown becomes more difficult. I’m not advocating scaring children/ people in general, but acknowledging that a test might hurt a bit, and that there is a wait for results, might be helpful in the long term.

    April 21, 2018
  • Just a quick shout-out to say: While I may not completely understand HA, I would never dismiss your feelings about the smear. I feel for you and think of you, I’m very sorry you’re struggling and keep my fingers crossed for a good result!! Thanks for sharing your perspective!

    April 21, 2018
  • Raquel

    REPLY

    I’m so glad you posted this, Amber! Look at all the positive responses!! And I haven’t seen the campaign you talk about as I’m not in the UK, but from your post and all the answers it definitely sounds like they should reconsider how they do these things… I don’t have health anxiety, but I hate when I’m not in control of things that affect me, not everything and not small things, but there are things that I have no control over and that leave me super stressed, sometimes irrationally stressed. For example for medical tests or procedures and stuff like that, before anyone comes near me I would like for them to explain EXACTLY what’s going to happen so I’m not surprised by anything and am better prepared. But most times I feel uncomfortable asking about what’s going to happen because I don’t think they understand that I’d rather know everything that’s about to happen and they just dismiss it and say “Oh it’s not a big deal, it’s gonna be quick, just seat there” and I’m like well yeah, sure, but why do I have to seat there? What are you gonna do? Why are you holding that weird thing and what does it do?? So if someone (or several people) had told me it was something totally easy and quick, I just wouldn’t think much about it, but when the time came I would probably be freaking out inside wanting to know what’s happening and what’s going to happen and why it’s so freaking different from what I’d been told!! And afterwards I’d wanna punch somebody and when I found out it wasn’t actually supposed to be easy I’d be screaming to anyone who would listen that people were telling lieeees!
    Anyway, 6 and now 8 WEEKS?? That must be hell, Amber, I’m so sorry! I hope you feel a bit better after having published this post and seeing the reactions to it. Lots of strength ❤️

    April 21, 2018
  • Ali

    REPLY

    Margaret McCartney is definitely excellent. And breast screening is a whole other debate……

    April 21, 2018
  • Thank you so much for taking the courage to share this post! I am sending so many positive thoughts your way regarding your results, and I’m hoping they arrive sooner rather than later! I know how you feel in this, as I suffer health anxiety as well. Yea, everyone says it’s an easy test and to just get on and deal with it, but that still doesn’t alleviate the stress of not knowing when your results will arrive or if they will be positive or negative – the unknown is the scariest! I always get myself so worked up whenever I have to go to the doctor, even if it’s just for something minor like a cough. I’m due for my smear test, which I must make an appointment for soon, and I’m definitely a bit nervous. On the other hand, I’m also a bit concerned by the process here. In the States, we get smears done once a year, and usually results back in a few days – so that definitely helps with the anxiety! But I’m told that it’s once every 3 years here, and now knowing that you wait that long to even get an appointment or results makes the anxiety a bit worse if I’m honest. Oh the struggles…

    April 22, 2018
  • Sarah

    REPLY

    Late to the party I know but man can I relate! I have currently been waiting 10 weeks and 5 days! First they said 6-8 weeks then they said 11. I have severe health anxiety too so I booked my appt the day I got my letter and was lucky enough to get an appt the same day! I sat in the waiting room almost hyper ventilating at the thought of having to wait for the results! Everything you spoke about I have thought too, would I be able to cope with a bad result? I’m worried about having to worry longer and still live a ‘normal’ life. I set a mental timer to start worrying (as much) only after 6 weeks and when there was no joy I set it again for 8 and now 11 although the worry is always there I feel like it’s somewhat under control (thank you CBT!) I wish I could be one of those people that can just easily move on and forget about it until it drops through the letter box! You really described it so well. Thank you for making me feel like I’m not alone in the world.

    July 16, 2018
  • T

    REPLY

    Thank you so much for writing this. I had my first smear this year, after a decade of putting it off. I don’t have health anxiety, and the wait for results wasn’t a big deal for me. My issue is that I often experience difficulty, discomfort and pain with all forms of vaginal penetration. I’m fairly certain that I have vaginismus, though my GP was dismissive and unhelpful when I discussed this with her 4 years ago and I haven’t yet worked up the courage to see another doctor. I ended up having to go for the test twice, because the first time it was so incredibly painful that I had to stop before they could get a sample. The second time they gave me some diazepam which didn’t seem to help much but I was able to grit my teeth and get through it. Both nurses I saw for the test were lovely (though I couldn’t help wishing that they had raised the possibility of vaginismus, or asked me more questions, or seen in my notes that this was an issue I’d previously raised with my GP, but I guess that’s not their job).
    Anyway, I found it quite difficult seeing my instagram feed full of reassurances that I shouldn’t be ’embarrassed’, and that the worst I’d experience was some brief, minor discomfort. So I really appreciate you speaking honestly about your experience, and reminding those of us that find this procedure difficult that we’re not the only one.

    August 17, 2018
  • I always find your blog super inspirational, really enjoyed reading this post. Thanks for the share.

    December 12, 2018
  • Becca

    REPLY

    I think you’re incredibly brave for writing about this so openly. It’s such an important topic and this side of the story never gets shared. Thank you x

    January 3, 2019
  • Jennifer

    REPLY

    My doctor (Germany) follows the no-news-is-good-news approach and only calls you with results if something is wrong. I get that this probably helps get results out faster to people who do need follow-up, but it definitely makes the waiting more stressful. I’m grateful that I have such a good relationship with that doctor, though. Sympathetic healthcare practitioners can make a big difference.

    April 16, 2019
  • Dani

    REPLY

    I completely understand this.

    After a 5 week wait, my results should be here this week.

    I will NEVER go for screening again. The anxiety has slowly built up to the point I feel unable to cope.

    I just cannot put myself through the months and months of sickening anxiety. Months because I dread the few weeks up to my smear date and then it’s the wait of several weeks.

    One screening test was inclusive as the nurse didn’t get enough cells which meant I had to wait another five months in severe anxiety.

    I cannot put myself through this sh*t ever again.

    There is absolutely no support or consideration for women like us who suffer anxiety.

    Most women are anxious when waiting for results but when you have our sort of problems, it can make you feel near suicidal.

    It’s just not worth it and so I have decided I will not attend screening ever again.

    If I get symptoms of cervical cancer I will deal with it then!!!!!

    June 16, 2019
  • Marie

    REPLY

    I can totally relate to the above, since receiving the letter I have felt ill and after having it today, I now have to wait 5 long painful weeks to find out if I have something. I feel so overwhelmed by it all and don’t know how I’m going to cope.

    September 18, 2019
  • Vanilla89

    REPLY

    I struggle with anxiety and OCD, Smears trigger anxiety in me to the extent that I can’t function which is something that I am afraid to talk about. Thank you for posting this and shedding light on a taboo topic x

    December 1, 2020
  • Emma

    REPLY

    This is such a great post. I HATE how so often the information we’re given by health professionals is that a smear test may be a bit uncomfortable but won’t hurt, when for many women that simply isn’t true. Sure, it MAY be fine, but it may also be horrendously painful and may also be very psychologically traumatic. I have a tilted uterus and a very low pain threshold, which means that smears are always painful – not excruciatingly so, but to the extent that I dread the test and can only tolerate the speculum being opened for a few seconds and even then it’s “Ow ow ow quick hurry up!” I’m due another test now, and my main terror is that I’ll get an abnormal result and be told I need a colposcopy, because I honestly don’t think I could go through it without a general anaesthetic, which at the moment (Covid time) might be very difficult to arrange, not to mention the likely trauma of being told that I’m making a fuss over nothing and again being told it ‘shouldn’t’ hurt. I know I’m worrying about something that might not even happen, but it is a major source of anxiety for me. But I agree that what really doesn’t help is official sources saying it might just be a bit uncomfortable, when that might be very far from the truth. I understand they don’t want to terrify people by saying “This could be agony!” but equally, I would feel far more betrayed if I was told a procedure would be painless and it turned out to be the opposite. I feel it also raises issues around the topic of informed consent, in the sense that if a woman consents to an examination on the basis that it won’t be painful but then it is, she might feel extremely violated and be less likely to trust doctors in future. Personally I think the smear is a very outdated method of testing, isn’t as reliable as it could be, and I’m amazed that a less invasive procedure isn’t commonplace yet.

    January 23, 2021
  • Emmie

    REPLY

    I’ve just found this post and thankyou for highlighting the health anxiety. I had my smear test last Weds and I am terrified over the waiting time I have to ensure for the results. I wish they could just do it quicker and I’m trying to be positive it’ll be completely fine, doesn’t help that a lot of marketing campaigns for the test go with the scare tactics to encourage numbers!

    January 31, 2021
  • Clare

    REPLY

    I am finding this page in 2023! Haha 😂
    I had been putting off a smear for ages because of SA as a teen, and was pressured into a smear aged 27 when I was at an asthma appointment. The nurse was like
    “You’re overdue a smear, so we will do that first and THEN you can have your prescription” What followed was 30 mins of being stabbed at, her opening the speculum as wide as she possibly could, and “just rotating” and when I told her to stop she said “relax, I’m almost done” I was sweating and so scared that I froze. Freezing isn’t consent but to healthcare professionals it is if you’re female apparently.
    My result came back with HPV postive, and I refused to go back to that place “In one year to see if your immune system has cleared the virus” I felt dirty, disgusted, ruined and worthless, which to be honest if you have ever been assaulted those are the feelings most of us have about our bodies anyway because they are literally taken from us.
    I did a home test in 2022 which sadly came back positive, so I went private and paid 1500 quid for a colposcopy with a very well respected consultant gynaecologist who has one foot in the NHS and the other in private.
    I had to have a nurse hold my hand the entire time, and another made sure I didn’t crawl off the chair with the stirrups…
    My colposcopy was fine, and she suggested a smear in a year to see where the virus was at, but reassured me that I was ok.
    I was like “Are you sure? That nurse must have thought my insides really f*cked up for some reason” I was crying and asking if I looked “normal”
    Then, 2 weeks after the consultant wrote to my GP to tell them that she had examined me I got a pink letter telling me to go for a smear ASAP. 2 weeks after colposcopy?
    Then, I tried to opt out because the past few years this whole thing has destroyed my relationship with my body, my concept of womanhood is just that I exist to give everyone access to my body and that my body belongs to the medical system, the government, and men.
    I have felt suicidal, and was told by a therapist that I need to “suck it up because it’s part of being a woman”
    Medical assault is part of our existence and they have the cheek to say “most women are embarrassed about their bodies UwU^^^”
    I can’t even use a tampon anymore, haven’t masturbated in literally years, was single for a long time before the smear, but now cause of this virus thing in my head, even if my body already fought it off, I don’t want to catch HPV again so I think I will be single for life.
    I don’t want to catch every strain of this, because this isn’t POKEMON GO .
    I’m also Immunodeficient, and whilst only half of my immune system is broken and my immunologist isn’t concerned about HPV affecting me for life, every appointment has been clouded with this HPV thing and me crying about my genitals for the last 3 years.
    My GP referred me to a psychiatrist and suggested that I “have generalised anxiety disorder and reduced intellectual capability ”
    My GP was also changed to a man without my knowledge. Fun.
    I have refused to go to an asthma appointment since 2020, and the 60 day prescription thing hit wales and they deliberately started rationing my inhaler, to coax me to come in for an asthma check that I know will end in assault because they need to hit their quotas.
    I’m not reckless with my health.
    I really fixate on it.
    Tbh, my immunologist talked me through all the subsets of the cell counts when they do an FBC (full blood count) and the types of leukocytes and I doubt he would do that if I was an intellectually challenged crazy woman.
    That said, the anxiety and my relationship to my body is irreparable and I will possibly never recover. It has left me unable to even work or function as a normal person because cancer and my vagina is all I think about.
    Cervical Screening Wales also forced me to have a follow up colposcopy WITH BIOPSY “for our records, because you didn’t go through the NHS system”
    Honestly, the gaps in their admin was my fault?
    Thankfully the gynecologist checked my records and gave me a choice. I now have to learn to use something called a dilator soon because this tampon thing is stressing me out and if I can’t bust a wank going through 40 years of this is unthinkable really.
    I genuinely have even said that I woukd rather be dead than have female anatomy because we are literally brutalised.
    The fact that the speculum hasn’t changed in 200 years, means it never will.
    Some nurses like to treat you like rubbish for having HPV which makes you feel dirty.
    I didn’t engage in risky behaviour
    Besides, ANY sexual contact can get it…
    You’re only safe if you’re a nun.
    The thing that annoys me, is that men can sow their wild oats, but we will be hounded to kingdom come about HPV and even blamed for it or shamed.
    They will never find a way of testing men, all this medical innovation in other areas and yet we are still strapped down and pretty much assaulted.
    🙈🙈🙈🙈

    I get why these tests are important, but when they are forced I do think it does a lot of women more harm than good.

    I live in jeans and turtlenecks or hoodies because I don’t want to be perceived as a sexual creature.

    I literally live in fear, and the rest of my healthcare is suffering enormously.
    My lung function has gotten worse because of the inhaler sitch.

    People need to stop treating us like vaginas and vessels and start seeing us as people.
    If we are all mental with rampant anxiety, and think too much then maybe we have feelings too?

    July 7, 2023
    • Clare

      REPLY

      Ah yeah,
      And I have genuinely asked for a hysterectomy to avoid having these checks.

      Major surgery, and early menopause and possibly getting sepsis is EASIER for me to think about than my body not being given back to me until I am elderly if I am fortunate to live that long.

      I genuinely can’t speak highly enough of the gynecologist that I have seen twice now, and tbh I will refuse to see anyone else for as long as humanely possible because she is sympathetic and straight to the point.
      That said, I am never going to see a practice nurse again without someone being in the appointment with me, and I will never be able to trust a nurse who is from “the fountain pen generation” and that’s not a choice, my body just tenses up and even if I feel calm my blood pressure creeps up to insane levels. 😂😂😂😂

      I genuinely believe that “the body keeps the score” so treating everything by dulling our minds is potentially detrimental.

      July 7, 2023
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