By Brontë Schiltz
Content warning: contains mentions of sexual assault.
Just over a month ago, we passed the ten year anniversary of Jade Goody’s death. On March 22nd 2009, at the age of 27-years-old, the television personality and mother of two young children succumbed to cervical cancer.
In the months following Goody’s death, gynaecologists in Britain carried out over half a million more smear tests than the previous average – an impact which was subsequently termed the ‘Jade Goody effect’. Recently, however, figures have dwindled significantly, now at their lowest in two decades, with only 65% of under-35s having attended a screening in the past 12 months.
Over the past few months, in the approach to the decennial anniversary of Goody’s passing, this troubling statistic prompted an influx of articles with the shared mission of encouraging those eligible to take up their invitations.
In various articles, journalists from The Guardian, a forerunner in the campaign to improve smear test attendance, write that ‘fear of what we look like “down there” means cancer rates are rising‘, and that ‘women could actually die of embarrassment.’
In a similar, albeit somewhat less apocalyptic, vein, numerous campaigns circulated around social media focus in on embarrassment as the primary – if not only – cause of avoidance.
Emerging accounts suggest, however, that this is far from the case. In March, The Independent published an article entitled ‘Cervical screening: How enduring use of 150-year-old speculum puts women off smear tests‘, in which journalist Sirena Bergmen thoroughly debunks the myth (perpetuated by the likes of The Guardian‘s Chitra Ramaswamy, who dismisses aversion to the test as the product of internalised misogyny) that the procedure is always painless, revealing that, in actuality, up to a third of those eligible for the test may have a retroverted uterus, making insertion difficult and often extremely unpleasant.
This is far from the only reason that many people choose to avoid the test. In 2009, The Guardian published an article to a very different tune than their current output, entitled ‘Why I’m never going to have another smear test‘, in which journalist Clare Allen asked: ‘For women with mental health problems, learning disabilities or a history of sexual abuse, smear tests can be especially traumatic. Why doesn’t the medical profession know this?’ Ten years on, we must ask why this question still needs to be posed.
I spoke to 13 people currently eligible for the test, ranging in age from 21 to 32-years-old, and consisting of ten women, two non-binary people and a trans man. From that group, ten said that the speculum was a significant factor in their aversion to the test.
Hayley, 28, explained: “Due to my endometriosis and chronic pain, I find the speculum incredibly painful and I am only able to get through the test with strong painkillers.
“In my first test I had a panic attack when the speculum was being inserted due to the pain I felt. At this time I didn’t have my pain diagnoses and I thought something was going wrong because I had been told the “quick and painless” myth.”
The pain and anxiety caused by the procedure is so severe for some people, in fact, that carrying it out actually proves impossible. Sarah, 21, experienced this problem when she recently attempted to receive her first screening.
She explained: “‘I went in recently to a check-up and the woman I was seeing said we should do it, I hadn’t done it before and was very apprehensive. I have past trauma related to a medical setting and definitely having to lay down and feeling helpless and out of control of the situation is triggering.
“I knew it was important so I agreed to try but we didn’t get very far as I was crying and in lots of pain, so she said we didn’t have to do it. After that experience I am definitely discouraged from ever doing it again, because I don’t see how it will be different.”
For some, the procedure is even more traumatic. For Zach, 27, it is particularly fraught: “As someone who has adnemyosis (chronic pain in the uterus), it is very painful for an examination to take place, and also the little that gynaecologists know about transgender people makes members of the community not go for annual check ups on their reproductive health.”
Zach adds, “It also is a gendered environment, so if you’re a (trans)male and your name is called out, then a lot of folk will look at you and question why you are there.
“With the case of sexual assault and trauma, it can be a very triggering setting as the position that you are somewhat forced into can bring back memories of an assault, and if the doctor doing the examination has a lack of bedside manner then it can be yet another traumatic experience for someone. I wasn’t aware I was getting an examination done (the first time I saw a gynie) and was only told when I was on the bed what was going to happen. I did refuse but she pressed on and tried to force the speculum into me, which caused me a lot of pain and distress. I left the office crying and didn’t go back to see someone for at least five years.”
Of those who named the speculum as a significant factor in their resistance to the test, seven said that they would be more willing to go through the screening procedure if smaller or more flexible speculums were used, or if home kits were made available.
“On top of my health issues it would alleviate the anxiety I feel during the test due to body dysmorphia,” Hayley explains, a belief also expressed by two other interviewees.
“I also believe that home kits would be a tremendous benefit to sexual assault survivors. I am particularly disappointed in how the inflatable speculum has been rejected by the NHS despite trials showing the positive effects.”
Several interviewees also expressed outrage at the insistence that the procedure will not cause discomfort to anyone who has previously had penetrative vaginal sex.
“Sex is a completely different arena where you are (hopefully) aroused,” Jules says. “Your vagina can expand significantly in that state, and in general you are going to be more comfortable when you’re being penetrated by something you want, with someone you trust, where you feel somewhere safe. The smear test is clinical and invasive, and it’s not trying to please you.”
Jay, 28, agrees, calling the notion “laughable.” Jay adds, “The degree of pain I experience during the test has not lessened after I experienced vaginal sex.”
For Isobel, 30, it is particularly upsetting: “I have had a healthcare professional say this to me whilst I was crying during a test. I find it ridiculous and factually incorrect because the test is painful for me despite having had penetrative vaginal sex. For me this is akin to saying a woman should have no problem with being raped as long as she’s had sex in the past.”
It is undeniable that the smear test is of vital importance. In 2016, cervical cancer was the cause of death of 854 people, and screenings are crucial in its identification and timely treatment. Until we stop branding those who avoid the test as infantile and vain, however, we will do nothing to bridge the gap. Some people may be dying of embarrassment, but it increasingly seems that people are far more likely to die of trauma, which can’t nearly so easily be dismissed by garish pink Facebook posts.
The trial of home kits offers a beacon of hope, but we have a long way left to go, and until medical professionals become far more sensitive to the real reasons for the diminishing attendance figures, from gender identity to a history of sexual assault to chronic pain conditions, those figures don’t look set to change. As one interviewee expressed: “I’m not embarrassed, I’m traumatised.”
Things must change, and if we are to learn anything of use from Jade Goody’s passing, they must change now.
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There are also those who decline not through fear or trauma but because they’ve done their research, weighed up the pros and cons and decided the test is far more likely to lead to unnecessary surgery – which, despite all the medical reassurances that these procedures are minor and harmless, can cause lasting complications – than prevent cancer or save their lives. It’s an antiquated and unreliable test for an uncommon disease which was never subjected to any clinical trials to evaluate its effectiveness or gage the risks. It is obvious to anyone who looks beyond the simplistic messages spewed out to the public that screening tests can cause great physical and psychological harm through overdiagnosis & overtreatment, an inconvenient fact which the medical profession brushes under the carpet. Any screening test which causes large numbers of healthy patients to undergo invasive and potentially harmful investigations and treatments should never be worshipped in the manner the ‘smear’ test has been. Not only can it cause harm to the women enrolled into the programme, but it requires huge amounts of resources and funds to make the programme seem viable – resources which would no doubt benefit more people if spent on other services.
It is quite clear to me that the reason this awful test is still inflicted on women and lauded as ‘vitally important’ is to protect the programme and all the jobs created by it. Self-testing has been around for some time, yet here in the UK it’s just a distant dream. Why?
The programme costs £175+ million per year, much of that money is paid out to GP’s for reaching screening targets, so it’s clear than money is no object when it comes to protecting the programme. There have been numerous issues and delays within the programme within the last few years, yet instead of addressing the crass incompetence at work, the powers-that-be have been running these insulting campaigns to assure women that all is well and encourage them to bully other women into attending an invasive procedure which, by rights, should have been replaced with something less invasive and more accurate a long time ago.
Journal and magazine articles – Brontë Schiltz
I thought I was the only one that felt this way It’s comforting to know that I am not the only one.
I am glad I’m not the only one, who feels this way.
Excellent article. I just came back from my GP having failed to successfully complete a smear test due to extreme pain and discomfort. I’ve always found the rest to be very painful and have been avoiding to do it for five years. My new GP insisted I should have it and decided to give it a go once again. Too painful to proceed so had to stop it and go home. Never again. I hope this archaic device will eventually adapt to our modern era and take into account people’s feelings more seriously.
I love articles like these because I absolutely HATE the smear test. In Canada, as a woman I want to control my body, and what is done to my body. I chose to be on birth control because I do not want kids (if I can’t stand a smear test, do you think I’d ever actually be able to stand being pregnant with those kinds of exams and going through child birth?!)
BUT. We pay for our birth control out of pocket. It is not covered by government insurance or any kind of health care. It is not free. Yet when my prescription runs out, the only way I can renew it is to book an appointment for a smear test. Something I just do not want to do and I feel I should have the right to opt out or refuse. I feel I should have that right to say “I don’t want this done to my body. I refuse.” Why don’t we have this control? And if we DO have this control, then why don’t we KNOW about it?
I have been abused in the past, not to the point of rape but I know it would have escalated to that point during that encounter had I not physically defended myself and fought off my attacker. But, because of things like this, I feel entirely vulnerable. Unless you have been in a situation like this, you will not really understand. That situation was forced upon me and I feel things like this are too. It basically feels like a repeat scenario. It’s an “I’m going to do this to you” type of feeling. They try to smooth it over with “all women have to have them. You’re not alone”. “It only takes a few minutes.” “It’s only once every few years.” “It’s a medical procedure. It’s perfectly normal. You’re in a clean, safe environment.” “It could save your life down the road”. None of these explanations help to someone who is literally traumatized and too guarded to pull down their pants in any kind of public setting. It’s awful. And no, it is not painless. If you are too tense, simply telling someone to “relax” isn’t going to make it all better. It’s the same as having sex forced upon you. It would hurt, obviously. Having this thing stuck inside you for an exam hurts too. And to say “if you were abused in the past, how can you get comfortable enough to have sex?” That is not the issue. Sex is entirely different. When healthy, it is entirely consensual. Two parties are agreeing on pleasuring each other. You are aroused, happy, and in a different kind of moment. This is a procedure and a procedure that feels forceful and unnecessary, and I have yet to see or hear anything that will prove otherwise. On my first ever smear appointment, I was 18 and had to get it in order to be on the pill. I was sexually active and wanted to be on birth control. I was terrified. Just as terrified then as I basically am now. The only difference is I know what to expect now and I’m not afraid to speak up if something is wrong. At that first appointment, I was obviously very nervous. I was shaking, I was sweating, I wasn’t enjoying it. It did hurt. It felt like it had taken forever when it really hadn’t. The nurse knew it was my first exam, knew I was nervous, and I told her this as well. Then, I had found out a few weeks down the road that she had spoken to my mom at one of HER appointments about how nervous I was during my exam!!! She actually had the nerve to speak publicly about how nervous I was, something I felt was extremely private and confidential, and it made me lose even more faith in the medical system. This is my mother’s appointment, why would you bring up me when that actually goes against all privacy codes? Privacy and confidentiality, something we should all be highly entitled to and an aspect that should be highly respected during such an invasive exam like a smear. I felt like I was being judged for being nervous, like I wasn’t allowed to be nervous, and it made me wonder at this point if anything was private anymore, making an already vulnerable time even more vulnerable. The nurse had the nerve to ask “did your daughter have a bad pap experience in the past? She was more nervous than anyone I had ever seen.” That was not her place to ask or to judge, at least I felt, and certainly not to be asking my mother and not myself! The nurse didn’t bring it up once while I was there at that very appointment. She did not ask me why I was so nervous, but she asks a family member?? In Canada, teens are actually allowed and able to access birth control without parental consent, as well as exams without parents knowing or parental consent, so how dare a nurse approach my mom and ask her about my past exam experiences? It actually isn’t even my mother’s right to know unless I want her to, let alone for her to discuss a private matter with her. At my next appointment, I am going to be asking if I can opt out of this old fashioned ancient program, and if not, it will be my last appointment. I feel I should have the right to say no and control what is being done to my body
Me either. My GP bombards me with texts to attend for screening but try getting to see s nurse or go for anything else is virtually impossible. More so during lockdown. It s all for financial gain as the more people they attending more funds given to that surgery. I even had my Gzp phone me at work asking me when will I book in for smear test. Again, 3 week wait for appt with her but she had time to phone round people.
the test is humiliating, degrading, traumatic and feels like sexual assault. I have medical trauma as a child and then as a teen , and makes no difference to the level understanding shown to me. – I am still bullied about choosing not to put myself through the horrific invasion. Ive recently found that I can self test – its cost me money, but anything is better than THAT
I had it done today and I was bawling my eyes out. The pain was so unbearable and I never want to experience that again. I did get it done like I went the the whole process but I’m traumatized from it. I even took ibuprofen too 3 pills of them and that didn’t help much.
I completely agree with every word I have never had nor will have a smear test as I refuse to undergo such a vile,barbaric,invasive test where the risks far outweigh the benefits.
It is reassuring to me to read the views and feelings I share in an article. But for obvious reasons upsetting that these feelings we share are still only just being heard. When it comes to women’s health we are in the dark ages. I also have PTSD from a medical setting – having to have my legs splayed apart at the age of 19 by two nurses and them asking me casually ‘have you had your smear?’ whilst I lay there in horror enduring a separate extremely harrowing event. I wasn’t old enough yet to need one and they didn’t tell me if they were performing one. I just lay there helpless.
And now because of all the shaming around people who don’t go to get screened, my friends question why I haven’t been tested and say that I MUST go, without considering why I wouldn’t.
I end up limiting my time spent with those friends and anyone I think might bring it up as it makes me panic and regress.
For a time the constant letters that would arrive through my letterbox telling me I had to attend gave me panic attacks and ruined my day. I have since moved and did not update my address.
Other women I know have had false results, had to have invasive procedures and one even left a job because they were told they had cancer when they didn’t.
The system needs to change. For so long we are made to feel like our bodies aren’t our own, and that we can’t even check our own vaginas and cervix- someone has to do it for us with hideous tools in bright lights with us on our backs wishing we were dead.
If we had home screening kits a shit tonne more lives would be potentially saved, physically and mentally.
I often panic that I have cancer but I honestly feel that is a road I will have to go down as I just can’t live having those invasive and horrific tests.