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Having a smear test when you're disabled

mermaid_blogsmermaid_blogs Member Posts: 3 Connected
edited March 2019 in Guest blogs

I’m Beth, 25 and have been a wheelchair user for about 10 years. I have Ehlers Danlos Syndrome, Fibromyalgia and PCOS. I write on my own lifestyle and beauty blog at mermaidindisguise.co.uk

We all know that smear tests are important. They absolutely need to be done. There’s been a huge increase in people talking about them to try and reduce the stigma which is great, but they all seem to start with “Don’t worry they’re easy, pain free and over in a minute”. This isn’t always the case, especially if you have a disability or chronic pain condition. I went to have my own smear test done recently and was reminded of just how uncomfortable and painful they can be. I’m not even sure I can describe the pain.

beth outdoors using wheelchair wearing dress and ugg boots and smiling at camera

In my case, just getting into position is a lot. My hips really struggle with the position they need to be in. I was told to just relax, but I don’t think the nurse truly understood that if I relaxed my hips would’ve badly dislocated. Next up, I have a wonky cervix. The nurse couldn’t find it and every second of her looking was pure agony. It was so bad that I was near tears and had to ask her to stop and have a breather. In the end she used the longer speculum which made it a bit easier but it was still extremely uncomfortable.

I am the only wheelchair-using extremely bendy and breakable young woman in our town and you can tell. My nurse was absolutely lovely, but it was evident that she was out of her depth with my needs and my wonky cervix. Just trying to get my chair close enough to the bed was a mission.

Even Doctors don’t seem to take into consideration the requirements of those of us with disabilities. Not everyone can transfer onto the beds but GP surgeries don’t tend to have hoists available. For some people, getting their legs into the correct position is impossible so stirrups might be needed. Others need a more experienced nurse/doctor. It can then be a battle to get a referral to a place that is accessible and suitable for your needs.

We’re constantly told we need to book our appointments and that these tests are extremely important. However, more needs to be done to assist those whose needs aren’t met so that these potentially life saving tests are accessible for everyone.   

My tips? Ask before you book the appointment what can be done to make sure it’s as comfortable as possible. Take painkillers before. I didn’t and massively regretted it. Talk openly with whoever is doing it and make sure they know what your potential issues/concerns are and be open throughout. If it’s too painful, stop. You can always try again.    

This is just a reminder that Smear Tests aren’t a breeze for everyone especially for the disabled, chronically ill or Transgender community. They can be extremely painful or beyond uncomfortable for a huge variety of reasons. That being said, they are still hugely important.

You can find out more about cervical screening on the NHS website. Have you had your smear test recently? Did you face any issues?

Replies

  • niamhgabriellexniamhgabriellex Member Posts: 1 Listener
    All of this! Thank you love for sharing - you've summed it up well! Absolutely dreading mine, but I have another year to go...  <3
  • TeejTeej Member Posts: 2 Listener
    I havent been due to all of the issues you have mentioned above and the amount of pain i am in, i know ill have to go but im dreading it
  • TeejTeej Member Posts: 2 Listener
    Ps im perimenopausal as well 
  • RhonaRhona Member Posts: 13 Courageous
    This sounds daft when we know how important smear tests are, but I've not had one for ten years or so. This is not just due to pain worries but my MS also gives me continence concerns. I can imagine when they try to get the smear they'll get a lot more that they don't expect. The pain I'll just carry with me as always, the embarrassment would burn forever. I had a heart attack just over two years ago and had a stent fitted but all I remember is that I couldn't control my bladder and was wetting myself throughout. The staff were fine about it but the memory stays with me like a hot dagger.
  • mermaid_blogsmermaid_blogs Member Posts: 3 Connected
    @Teej I hope that when you do go that it's as stress free as possible 
  • mermaid_blogsmermaid_blogs Member Posts: 3 Connected
    @Rhona I can't imagine how difficult that must be for you. It's hard when we know that Drs/nurses see and deal with these kind of things all the time but it doesn't make it any easier for us to deal with. 
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