January
14
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The fear-mongering of the smear
Mention ‘smear tests’ (or ‘pap tests’ to our American friends) and everybody has an opinion. Many will have had an experience with abnormal cells themselves, and consequent procedures. Many will have heard about friends who have undergone such anxiety-ridden times. And most will say women should/must/have to have smear tests.
And I am here to argue against that.
Smear tests should be available, but optional. They should not be forced onto women. And women should be given the correct information to make an informed choice and give consent.
I have been increasingly frustrated recently with the plethora of posts on my Facebook timeline, calling women to “just” get a smear, that it is “just 5 mins of discomfort to potentially save your life”, and that it is “silly” to not have smear.
Whilst most people mean well, there is a lot of harm caused by this constant bombardment of women to undergo a potentially traumatic, painful procedure in order to be a ‘responsible woman’.
Women are avoiding seeking medical advice for other issues, because they are scared of being coerced into having a smear. This is widespread. Who knows how many women develop and die from other cancers due to delayed medical advice? If you think I am being dramatic, take a simple google search into female message boards to see how terrified some women are.
Given that 1 in 4 women are survivors of sexual abuse, assault or rape, all medical investigations should be trauma-led. There are women who report being or feeling assaulted during the examination. This then puts them off seeking medical help for other issues. There must be more efficient, less invasive ways to test such as urine testing.
I know many reading will think “what’s the big deal”, but to many women it IS a big deal. . Women with a range of life experiences and health conditions, for whom having a smear is not physically or mentally possible.
There is also the heteronormative assumption that all woman are in a relationship with a man, are all sexually active, and all are having sexual intercourse. Women should not have to justify their reasons for not needing/ wanting a smear test.
Women do not simply ‘choose’ to have a smear. They are pressured/cajoled/bullied/coerced. This is wrong! A simple ‘no’ should suffice. Going to the Dr about your wrist and being lectured about smear tests is not appropriate. (You can download a form online to opt out from your local database, although most GPS and nurses won’t tell you that).
The wonderful Dr Margaret McCartney, a brave and inspiring GP in Scotland, goes against the grain, by suggesting women should make the choice that is right for them. Her blog post Women, cervical smears and manipulation prompted my post, and the comments section is harrowing, although not unusual from what I have heard from women.
Dr McCartney also wrote Why I’m Saying No to a Smear for the Independent. She eloquently writes much of what I am been musing for the past few years.
My own turning point for the bombardment of “why haven’t you had a smear” was when a wonderful locum doctor asked, and I said told her I was sick of people asking, and she said straight away “It is your body. I will write a note on the system so they stop asking”. Such a kind and empathic act. This followed an incident when a nurse locked the door, got a kit out, and said “I will just do it now” despite me not consenting. She only stopped when I burst into tears. (This was a few years ago before I become assertive. Now I would take legal action against such an individual and report them to the Medical Council.). This has got to stop. I have had my smears during my laparoscopies, but I will not be having more. I am low risk, and it is my choice.
I then turned to various groups I am part of, and the internet, and realised how common it is to feel unable to say no to a smear. For surgeries to lie and say there is no way of getting the letters to stop. For appointments to be made without a woman ordering one.
This is not about protecting women. As with my issues with hormonal contraception which I wrote about here, women are ignored when it comes to making informed decisions about our own bodies. We are spoken down to like children. We are told what we must do. But we are not given the real statistics or full information. And we take medical knowledge for granted. There is a massive disparity between the risk of getting cervical cancer, and the obsession with which the medical community harasses us to get tested.
My husband is of the age where prostate cancer is a real risk. He has not once been pressured into any testing. According to the NHS website there are over 40,000 new cases of prostrate cancer each year. Are men bullied into having a lubricated fingers up their rectum on every Dr visit post 50? Of course they are not. There is also “no single, definitive test for prostrate cancer, so your GP will discuss the pros and cons of the various tests with you to try and avoid unnecessary anxiety”. No such luck for women, who are grossly mislead about the dangers of abnormal cells and the need for screening. The fear of over-diagnosis and over-treatment for ‘abnormal’ cells that might never turn cancerous. The study might not seem dated, but at the time Michael Baum, Emeritus Professor of Surgery at University College London and a cancer screening expert, calls the research “absolute dynamite. Any intelligent woman reading that would make an informed decision not to go for cervical screening”.
Dr Angela Raffle wrote the British Medical Journal here, about outcomes of screening.
The conclusion of the study:
“These findings have important implications. First is the scale of the problem of overdetection. Even women who receive results of borderline changes can become anxious about their risk of cancer.20 Figure 1 shows that for younger cohorts the cumulative lifetime incidence for any abnormality could reach 30-40%. It is essential therefore that we change people’s perception of the meaning of an abnormal screening result.
Secondly, because of the resources involved and the potential to do harm, it is in the public’s interest to control the introduction of inadequately evaluated or of inadequately quality assured cancer screening. Our results show that cervical screening in England and Wales before 1996 entailed 57 000 tests and 1955 abnormal results for each death prevented. Prostate specific antigen testing for early detection of prostate cancer will involve similarly large numbers of tests and abnormal results and the net result will be major iatrogenic harm from invasive investigations and treatments. We have a duty to protect the public from this damaging activity until there is good evidence on all outcomes.
Finally, our results suggest that over 80% of high grade dyskaryosis and of high grade dysplasia in the cervix does not progress to invasive cancer. This calls into question the prophylactic removal of other organs (colon, ovaries, breast, oesophagus) and the offer of potentially harmful chemotherapy and radiotherapy treatments for healthy people found to have dysplasia of those organs. The net result could be harm because the absolute risk of progression in these tissues may be low“.
This is in opposition to the common-sense discourse of believing women MUST get cervical screened, and that all detections of ‘abnormal cells’ will “save lives”.
As the blog Women Against Stirrups argues: “Dr Angela Raffle, consultant in public health medicine in Bristol and author of the BMJ paper, began the research because she was struck by how many women were being referred for colposcopy (microscopic examination of the cervix) after abnormal smear test results.
‘Originally, people thought everybody with an abnormality would go on to get cancer, and we have come round to realising it is just a phenomenon of screening,” she says. “Cell changes are very common and all of us have them, and they go away; it is impossible to predict who is going to go on and get cervical cancer….
There could be a reason for this. Raffle says that the screeners realised in the 1980s that they needed to screen and treat enormous numbers of women in order to make an impact on mortality figures. Most would not have gone on to get cancer – but a very small number would, and it was these women they wanted to catch. If women realised how unlikely it was that they would personally benefit from screening, the screeners might not have got the numbers they needed to reduce cervical cancer deaths”.
So why then are we not allowed to have an honest and transparent discussion about cervical screening? Why are those opposed to the dominant discourses surrounding smear tests shouted down as “irresponsible”. Surely a lot more research needs to be done, and we need to question this? Sadly, as with most cancer debates, the topic is so emotive, we cannot have a reasoned discussion.
There is recent research to suggest that if you do wish to take up cervical screening, every 10 years is safe, rather than the 3 years the UK currently operates.
Over 3000 women are diagnosed with cervical cancer each year. This is obviously terrible. However over 19,000 women are diagnosed with lung cancer every year, and over 55,000 are diagnosed with breast cancer per year in the UK. Every year over 11,700 women die from breast cancer in the UK. This is not to minimise cervical cancer, but to say in the grand scheme of things, it really isn’t my biggest worry, breast, lung and bowel cancers are.
Meanwhile we are being lied to about putting harmful silicone into our body, women under 25 are being routinely refused smear tests when they actively seek them, and we are being lied to about the effects of hormonal contraceptive and mental health.
This journal article on cervical screening, compliance and moral obligation is of interest. I think the pressure on women to have screening as part of moral obligation is huge, and is immoral on behalf of the NHS. I also think the insistence of cervical screenings, often despite the woman being visibly distressed, is about far more than helping us ‘fight cancer’. I think it is the compounding of the docile compliant female body who shouldn’t ask questions and can’t say no. If it wasn’t maybe we would be given better information and the reasonable ability to opt out. If this was really about science, we would be having open discussions about the findings of Raffle’s BMJ study, and we would be seeing lots of more research critiquing screening.
And for those that will say “But this is science”…The late nineteenth century saw a proliferation of increasingly extreme gynecological surgeries performed on women deemed neurotic or hysterical. In 1881, it was perfectly acceptable to talk about the need of clitoridectomies (now known of course, as female genital mutilation. We started that). I also agree with this from the same blog (Arnold-Foster, 2014) “Many historians have since written about nineteenth-century medical ideology’s insistence on the pathological (inherently diseased) nature of woman“. I believe this remains. And women who object are positioned as neurotic and hysterical. The more things change, the more they stay the same.
Science is ever-evolving and changing. We need a non-invasive way to screen such as urine tests and home tests, and we need to stop many of the lies.
If anybody has further links to critiques of cervical screening and the ‘science’ behind them, please do give me a tweet @princessjack.
If any of these issues have upset or triggered you, please see the following websites. Please know that you are not alone.
National Association for People Abused in Childhood
Consent and Opting Out of Cancer Screening
plasticdollheads 
Thank you so much for tackling this subject.
When the programme was started in 1990, GPs were given a small incentive payment if they could screen 40 – 79% of women patients, but got a substantial bonus if they could hit the 80+% screening target, which had been set by Kenneth Clarke in his government white paper in 1989. The pressure was really on to force women to screen, or the GP would just miss out on the big 80% achievement bonus. I had my children during the 1990’s and had a GP who was a persistent bully for this test, and I am still distressed today by what I had to put up with from her during this decade. I opted out in 2003 after being chased up at home by phone, and discovering that such a way out existed. I can’t tell you the relief I felt from signing that opt out form. It is shameful that the choice to opt out is still kept a secret from women.
The NHS makes out that women are clambering for this test, that they are happy to undergo the test, and congratulate themselves on their success at achieving some of the highest uptake rates of any country in the world. They deny any woman finds it an ordeal or that any pressure is put upon women to undergo testing, but just about every woman I have spoken to is surprised to find out that anyone can refuse, let alone opt out.
About a year ago someone posted on one of the NHS websites that on trying to register at a new GP surgery, she was given a form to sign that she would agree to attend all cervical and breast screening appointments on time, as a requirement for registering at this surgery. The poster asked if such a document was legal. The post was soon removed after a couple of days, when readers began to reply.
I recently spoke to a lady in her mid 60’s who said she had just had her last screening test and was so relieved it was all over. She said that after every single test she felt like punching the nurse for doing this to her.
The truth about this test really needs to be told.
Thank you so much for reading and commenting, it really is a shocking state of affairs, truly terrifying!!! Men’s bodies would not be treated like this. The coercion and manipulation makes me very angry. I hope to apply for research funding in order to reach far more women who are currently suffering in silence. Please do stay in touch.
Thank you so much for this. I really can empathise with your comments. I have been harassed about my lack of smear tests in the middle of a medication review for severe migraine! I’ll be following your blog with interest
Thank you so much for reading and commenting! You can opt out of smears by using the form embedded in my blog post!
I really love to see someone with the same views as me. This is so sickening to me I want to throw up. Every doctor I’ve been to they ask “have you had a Pap smear? Well it’s something you got to do.” Like wtf? You never see any doctor fear mongering men to get these invasive exams. I am living with a bunch of brainwashed women in my family that won’t hear me out. Their the type of people that just do what their told without questioning. They definitely need to come up with something better for women. I read in an article that they had come up with a urine test that detects cancer far better than a Pap smear does. I just find it disgusting the the medical field makes women think that their bodies are just cancer magnets and you’re going to die if you don’t get one. All cancer is curable with eating a plant based diet but they don’t tell you that. Then they want to amputate your cervix instead of giving you alternative, why?? Because there’s no money in holistic healthcare.
I just feel so strongly about this subject. I suffer from heavy periods as a Virgin and everyone is telling me I need a pelvic exam. As a Virgin, I’m really not interested in have someone insert instruments and fingers into My personal spots. This world is screwed up, how do you tell a lady to sit with their legs closed but it’s alright to spread em for a doctor you don’t even know. This just doesn’t sit well with me.
Thankyou for reading and commenting!! We do indeed live in a brainwashed world, where you are seen as an irresponsible woman if you refuse to be medically assaulted. It is very frightening that the majority f women are so compliant and docile and don’t question this. As a virgin you are highly unlikely to get cervical cancer! Stick to your guns.
Last year, I received my first letter practically demanding I book my first smear test. It came with an information leaflet that I found extremely biased. It threw a lot of numbers at the reader that I felt where designed to intimidate a person into compliance, without really giving the “cons” side of the story. All I can say is, I’m glad I had the foresight to do my own research before making the appointment. I will not put myself through all that poking and prodding for a 1-2% chance that I MIGHT develop cancer that was always rare. I thoroughly enjoyed the look on their patronizing faces when I opted out permanently at the age of 25.
I am so sorry that I have only just read this message! I am very glad that you did your research. the letters are so demanding and threatening! x
I’m a 22 year old virgin and I absolutely dread the day I receive that horrid letter “inviting” me for a smear. I’ve already decided I’m absolutely NOT having it done. I have done a lot of research, spoken to many women who are also educated and are speaking out against it all. I know my risk (and I understand that it’s truly minuscule) As a healthy young virgin, I know there is really no need for me to have such an invasive test anytime soon. I will certainly not put up with being pestered into having it done. I will not tolerate anyone trying to pressure me and scare me into having it done. My body, my choice. It’s my genitalia! Every woman has every right to decide what is done with her genitals and whether or not she exposes them to some nurse in a cold, unnerving clinical room.
Thing is, I suffer badly with anxiety disorder and plus I’m disabled. I am admittedly vulnerable and highly sensitive in nature. I can’t put myself through something so violating unless I absolutely have to (meaning, unless I have a seriously high chance of developing CC and it is truthfully in my best interests to get tested.) But I know myself, my body, I know my risks and my health as of right now in this point of time. I know that I won’t be spreading my legs and having painful tools shoved inside of me when it’s so blatantly unethical and unnecessary. It’s so sad that my mum is brainwashed about it and believes “you must have it done” She’s like “It’s not nice but you’ve gotta have it done” even my grandmother briefly spoke about it once and Mum told her about how I don’t want it done and my nan was like “It only lasts five minutes. It’s so quick and it doesn’t hurt.” Yeah right. Millions upon millions of women talk about how traumatising it is and how much it hurt them. They talk about how horrible the nurse was and how degraded they felt.
I’d much rather receive a letter inviting me for a breast examination as I’m far more likely to develop breast cancer than cervical. Still highly unlikely with my age and health but way more probable than cervical which is way down on the list of most common female cancers. Breast is right at the top! At least here in the UK. Thank you for this article! I really want to see more women standing up against this and hopefully getting changes made.
Your body: your choice. I am very sorry that it is putting so much pressure on you. I agree that much more needs to be done in this area.
Thank you so much for reading the post and commenting. As you rightly say: your body, your choice!! If you have made a radically informed decision, then you can choose to opt out. As a virgin it is highly unlikely you will have HPV virus or will develop cervical cancer.
I am not against screening, but I am against it being forced upon women. It can be traumatic for many many women, and this trauma is dismissed.
In solidarity xx