Why don’t more women have smear tests? Because they really, really hurt

Last month, I replied to a tweet by @talkhealth asking why more women didn’t take up the offer of free cervical smear tests.

I pointed out that there was a very simple reason why one in five women don’t go for a regular smear.

It’s because smear tests can be immensely painful, especially if you have something like endometriosis. I expect that a lot of women are suffering in silence, or find the very idea so painful (due to past experience), they can’t bring themselves to even go.

Having personal experience of truly agonising smear tests that I’ve wept through, I really can’t blame them.

Smear tests are terribly painful for me and others

When you’re first asked to come in for a internal exam or smear test, the letter might mention that it’s a bit uncomfortable. That description falls far sort of the reality for me. A smear test triggers my endometriosis pain (which includes internal pain, vaginal pain), it causes me to bleed. It means I have to go home and rest for a day or more, and do nothing but lie down, hold my sides and writhe around in agony.

So in short, I can’t do anything other than experiencing serious pain during (and long after) a smear test. I am not alone in this, and it’s not that surprising given where the endometriosis can exist in women. If it’s found in your Pouch of Douglas, you’re likely to have a very hard time with this too.

Whenever I have one (or an internal exam of any kind). I’m normally out of action for a day or more. I hurt really badly. I am certainly no stranger to pain, but I rate a smear tests up there among my most painful experiences.

Why are people making women with endometriosis go through this invasive process without pain relief? Painful sex is a known symptom of this disease, so why is insertion of speculum deemed less painful? In a stressful, clinical setting I’d argue it’s even more painful.

Why don’t doctors and nurses understand this?

I’ve pointed out before my smear test that I have endometriosis and that my examinations can be deeply painful. This should ring alarm bells in the mind of the person undertaking the test. Quite often though I’m asked to simply “relax” or maybe “take an ibuprofen a couple of hours before you come in”. There is little to no appreciation of quite how painful it is.

I’m not even offered routine pain relief, even when I ask for it. It’s a deeply upsetting process, and I am certain it upsets other women too. I know that a lot of women with endometriosis are suffering in silence (like me) when it comes to internal exams and smear tests and this upsets me even more.

It shouldn’t have to be this way

Automatic pain relief should be the default for any woman with the word “endometriosis” in their notes. No wonder one in five women don’t turn up. The very thought of another smear test makes my insides hurt. I have no shame in admitting that I am very tempted not to turn up myself in the future. It’s really starting to not be worth the trauma and agony that it causes me, and I am a huge pelvic pain and women’s health advocate.

How to get more people to have smear tests

I fear this is a massive problem for many, and we’re trapped by the process because so many are unable to talk about it. I’m tired of “putting up” with the pain. I want smear test processes to improve for women with endometriosis, by improving the experience it’ll improve for everybody.

We have a gynecalogical condition. No one understands the importance of smear tests better than we do. However for many women it’s a trade up between an agonising experience that will leave them feeling violated and wretched and having an important women’s health test.

Offer woman pain relief and comfort for this invasive test, don’t rush people through what can be a very painful experience. Offer them a place to rest after it’s over.

Next time you go for a smear test, demand pain relief, explain the pain that it may cause you, point out that you have an endometriosis diagnosis and explain how it pain it feels explicitly to the nurse if you must. Get them to take notice of your pain.

If you’re not happy with the process as your locals doctors surgery, try enquiring as family planning clinic, as they seem to be on the ball when it comes to endometriosis and can offer you numbing anaesthetic and a smaller speculum.

I can’t ask you to tolerate this pain any longer, but I can ask you to find a better way.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

4 responses to “Why don’t more women have smear tests? Because they really, really hurt

  1. kelly

    Wow, I am completely surprised at this topic…I have always felt that the pap smears were so much more painful than what all my friends would experience. I seriously thought it was just me who had more than just “discomfort” as everyone always describes it to me! Again, I am finding comfort in knowing I’m not alone or that its not just “in my head”. Each article on this site I read has been literally putting the pieces of the puzzle together…

    • Yes it’s massive problem for women with endometriosis and one that a lot of medical professionals simply don’t realise. It’s something I am keen to campaign on more. I want someone to see that line on your medical notes that says “endometriosis” and change how they do your smear tests immediately.

  2. Elizabeth (Aust)

    I realize this article dates back to 2014 but in case someone is reading this article NOTE there IS an alternative to pap testing, but it’s not being offered to most women, but it’s certainly something you can buy online or even get through your GP. (in Australia and a few other countries)

    MOST women are HPV- and cannot benefit from pap testing, that’s about 95% of women aged 30 to 60, so most women are having unnecessary pap tests that simply risks their health. (false positives are fairly common with the pap test, especially with early screening and over-screening, they can lead to excess biopsies and potentially harmful over-treatment)

    Pap tests can be very painful after menopause as well, some find them intolerable, some are left distressed, bleeding and sore, the cruel thing is most of these women would be HPV- so cannot benefit from the testing.
    The Dutch are the ones to watch: they offer 5 HPV tests or HPV self-testing with the Delphi Screener at ages 30,35,40,50 and 60 and a 5 yearly pap test is ONLY offered to the roughly 5% who test HPV+
    This will save more lives and takes most women out of pap testing and harms way.
    Some women might choose to test for HPV only once, those HPV- and no longer sexually active or confidently monogamous.

    I don’t have pap testing, initially, I didn’t like the numbers, 0.65% lifetime risk of cervical cancer or 77% lifetime risk of colposcopy/biopsy under our program, now I know HPV- women cannot benefit from pap testing/are not at risk of cc.
    It’s disgraceful that pap testing is painted as a must or should, it’s an option, elective, nothing more…yet women are often pressured to test and even coerced into testing. (no Pill without a pap test, this is like saying to a man, no Viagra without a colonoscopy)

    There is little respect for our legal right to make an informed choice, to give informed consent for the test. Women do not, IMO, receive real and complete information, we’re just expected to screen, counted off like sheep and scolded and judged if we choose not to test.

    There IS something better for those who want to test, but can’t tolerate the speculum exam, HPV self-testing, there is also a urine test in development.

    Note: Consider BEFORE you self-test for HPV, what will I do if I’m HPV+? If the pap test is unacceptable to you, will a positive HPV result simply cause you worry?
    A positive result means you’ll be offered a pap test, HPV+ women aged 30 to 60 have a small chance of benefiting from a 5 yearly pap test (until they clear the virus) but note: most HPV+ women simply clear the virus in a year or two. (so don’t panic!) Keep the risk of cc in perspective, it has always been a fairly rare cancer in the developed world and it was in natural decline before pap testing even started.
    HPV Today, Edition 24, sets out the Dutch program

    Be careful with breast screening too, real information can be found on the website of the Nordic Cochrane Institute, an independent, not for profit medical research group.
    I declined mammograms when I turned 50, again, an informed decision. Over-diagnosis is a serious concern and the risks of screening may exceed any benefit, I think so, but make up your own mind.
    Shocking that Breast Screen are using celebrity endorsement to urge women to screen, it shows a lack of respect for women and their legal rights, I’m not sure how they get away with it.

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