Smear test hell

[TandE]

Hi ladies. Another year another horrific cervical smear experience. I’m at a loss as to what to do, i want to get the test but I just cannot bear the pain it causes me. At least now I know it is - at least to some extent - a result of my endo. Just wondering if anyone got any ideas or tips to make it more bearable? Am on dienogest which I was told should help to relieve pain over time but no such luck so far appreciate any thoughts. Best wishes to all.

[Tangoandmax]

Hello, my most recent smear was so traumatic, but if it’s unbearable they should be offering it you with advanced pain relief like gas and air/under general anaesthetic. It’s an extremely important check which means they are responsible for making sure it’s carried out and making sure you’re comfortable.

I had severe pain due to endo sticking my uterus to other organs. I had suspicious bleeding which was a result of a cervical ectropion, I couldn’t have this treated due to the pain but I managed to sit for a moment hysterically crying whilst they got my smear done. If anything my response to the speculum really enforced I wasn’t being dramatic about the pain. I eventually had the cervix burned whilst in for laparoscopy.

I went in after having ibuprofen and cocodamol but it didn’t really help. Hoping that my next is manageable now that I have had excision.

[TandE in reply to Tangoandmax]

Thanks so much for your reply. I will pursue getting it done with anaesthetic. I have managed to get through it in all the years til now but this one was just beyond awful.

One question if you don’t mind. May I ask what you mean by having the cervix burned?

Best

[Tangoandmax in reply to TandE]

Not sure it was even burning to be honest. It’s called cold coagulation. I think it is some sort of heat probe which removes the cells.

Normally they carry it out under local anaesthetic I think, but they couldn’t successfully get the smallest speculum in place. I’d previously had two smears that were ok, first no issues, second slightly uncomfortable but the last was excruciating.

Good luck xx

[Sabrinacolada]

Hi,

Sorry to hear you are going through this. I have deep endo and find smears/ vaginal exams etc very painful. I had called prior to a smear when it was due last December to say I find it painful which also makes me very anxious. Especially since the month prior a consultant had an unsuccessful attempt to remove a mirena in the wrong position. The nurse was lovely and suggested diazepam from my GP prior which worked very well to calm me. I also think I took ibuprofen, paracetamol combined.

They actually had gas and air too ( used a bit of that as they also finally removed the stuck mirena). I must say the nurses were fantastic so worth calling in advance with your concerns; it maybe worth asking if can have gas and air ( i had started this a few mins prior and during)? In future I will use diazepam again as I think the anticipation also adds to the pain for me and found it went far better then usual.

❤️ Sabrina xx

[TandE in reply to Sabrinacolada]

Sorry to hear you have suffered too. Over the counter painkillers do not help me at all, so I think something stronger like you say is needed. Although one has to ask if we are having to take such painkillers is this really the best way of screening women

Take care of yourself.

[irishwife93]

I find smear tests super painful and always bleed after. I was also told I have a cervical ectropion, but I was scared to have it treated. Then in my last smear test I was told I didn’t have an ectropion I just had a pinhole cervix which is why it was painful. So now I’m totally confused. You should definitely insist on pain relief and maybe try to book the appointment at a time in your cycle when your cervix is less sensitive? I think it’s softer around ovulation so may be more sensitive but please look into it as I may be wrong.

[DutchVanderling]

I have always had painful smears that have escalated to the point that I blacked out the last time. However after that last time I had an internal inspection the gp somehow positioned me so there was a lot less pain (I fully believe the physician can differ loads - a gyno specialist absolutely recked me during the last cervical biopsy so it really does vary so might be worth asking for a different gp to last time?). I think part is also down to physician and body placement - ie if they use stirrups don’t use them, or they’ve suggested facing the wall before, or crook your legs position yourself so you’re more bent crooked - hard to explai, the cyscocopy taught me positioning can make a huge difference) but I can only sympathise. I’d ask for anaesthetic (I hope you get it)but they refused me as I couldn’t consent while under which I found plainly ridiculous as ops are more invasive and you’re unconscious for those - they don’t like giving anaesthetic unless it’s a bigger procedure because of the risks - it’s hard to explain to people without endo the extreme pain. I would also suggest neurofen as painkillers unless you can be offered anything stronger, make sure you pre request that they use the smallest speculum available (they will probably have to order it in) and plenty of lubrication. Make sure they allow plenty of time and patience, play classical music in the background… honestly I wish I’d found more to be able to suggest something better. I also have chocolate before and after and have a treat waiting for me like fluffy socks, hot water bottle and a sugary drink for when I come out.

I’m sorry I can’t suggest more. I know exactly the terror you feel - it’s worth it though. My gran passed from cervical cancer younger than I am - early thirties, so even though I hit the roof and cry and blacked out - it’s better than the alternative.

There’s not much that I can think of but I do wish I could help more. Take care, and remember to spoil yourself before and after it. Endo sufferers struggle with this more th an so many others can comprehend - you’re a warrior for getting through this. Sending huge hugs. At the very least I hope you know you’re not alone and we are all rootin for you.

[TandE in reply to DutchVanderling]

So sorry to hear what you have been through. It is so awful isn't it, thanks for your thoughts. Sending hugs too.

[ClaudiaGrace]

Hey, this sounds so horrible. Can I ask if anyone has ever said you have a retrograde uterus? I’m sure it is just the endo like you say but I only found out I had this out recently despite having loads of smeres and colcoscopy + cells burnt out (this does usually happen under local if you have abnormal cells, they put anaesthetic in your uterus, not nice) and it means they need to use a different speculum, which makes it much less painful. So it’s worth checking out. You also tip your bum up by putting something under it during the screening to get a better angle for it. I also always take paramol and ibuprofen 20 mins before but I’m not really sure that does anything.

[TandE in reply to ClaudiaGrace]

Nope, nothing abnormal about the uterus. Well except that it is stuck to the ovaries haha! I have to laugh otherwise I will cry. Thanks so much for your message.

[DutchVanderling in reply to ClaudiaGrace]

That’s the same as a tilted or tipped uterus isn’t it? It can be a horrible thing - useful to know to pre warn docs though - my mum actually bought me a gag card last time as a joke - it read ‘on her majesty’s secret cervix’ cause of tilted uterus making it so hard to find 😂🤦‍♀️

[ClaudiaGrace in reply to DutchVanderling]

HAHA that’s well funny, yeah I assume it’s the same as tilted, probs just the technical term for it. I only found out I had one when I agreed to let a trainee do my smear out of awkwardness and she proceeded to basically stab the speculum in to me until I was like I’m sorry but that definately isn’t right and the nurse stepped in and was like oh yeah sorry you have this and need a different approach all together 🫠 good times, got to love being a woman 😂

[DutchVanderling in reply to ClaudiaGrace]

I empathise. They call it tilted, tipped, retroverted and anteverted (cause it’s not already a pain enough it needs a billion names for ‘wonky’ 😂😭😜

Yeah, some nurses are just Rambo when they start and forget that you’re a human being. The best is when they say it like you’ve chosen to have it tilted 😜 crazy people. Like you say, so much fun being a woman 😂🤦‍♀️🤦‍♀️🤦‍♀️

[Chronic21]

Hi so I have this issue the speculum itself causes me so much pain it's ridiculous. I now have 4 letters written by different drs and nurses that have attempted in the past that stat i shpuld be having smears under general anesthetic. I have endo which has cause my pelvic floor to become hyperactive. It make anything down there painful I haven't been able to use tampons in over a decade. It's a long winded method on nhs but you have to book it as normal waste an appointment because even though it's stated multiple times they will want to try without sedation. Here's the worst part for me anyway... drop that mask you have to the world that we use to live day to day and let them see the pain. So far I have passed out once and thrown up... I'm due my next one beginning of next year and I have to go through my gp 3 months before to get the referal done on time. My first smear was positive for cin 3 cells cancerous strain so I have 1 more to go til I'm officially clear and can have a bit more time between the tests.

[TandE in reply to Chronic21]

Oh heavens, I really hope you get the clear soon, thanks for replying.

[CathyEarnshaw]

Hi, I’m so sorry you’re going through this. Have you considered doing an HPV self test instead of going for a smear test?

If you’re in the UK, the NHS now only tests for HPV as standard (the virus that causes most but not all cervical cancers). If your test is positive for HPV then they will then test the cervical cells gathered during the smear test, to check for signs of cancerous or pre-cancerous cells. If you test negative for HPV they don’t test these cells - presumably they’re just thrown away.

The reason for having an in-person smear test is to gather the cells from the cervix (something it’s difficult to do yourself). But you can do a self-swab for HPV and then only go to your GP for a full smear test if you test positive for HPV. (It’s worth noting here that having HPV doesn’t mean you have cancer - it’s a fairly common virus).

Doing it this way, if you test negative for HPV then you can spare yourself the difficulties of a full smear test. The swab is small, there’s no speculum and most importantly, you’re in full control.

Most GPs don’t yet offer self-testing (because as we all know, women’s wellbeing is a low priority among the medical profession). You might be lucky and it might be available at your practice. If not, you can get it from pharmacies such as Superdrug or Boots for around £45.

I hope that helps - best of luck with everything. x

[SavageGold in reply to CathyEarnshaw]

I'm so glad you brought this up. This is the kit my Dr gave me to use at home in lockdown. I knelt over the bath when I did mine and I remember thinking how much simpler, cost effective and HUMANE it is to let us do this in the comfort of our home. This way we aren't taking up nurses appointments, we are doing it in our own time and there's no vicious speculum. The uptake would be much higher if this was standard.

[TandE in reply to CathyEarnshaw]

Whoa, this is big news! I have never heard of this! It has certainly never been offered to me. I am going to get straight back to the GP today and ask. Thanks so much

[Cazarooni30]

My last smear test was so horrendous that she gave up, she then prescribed vaginal pessaries of hrt, for two weeks, which should relax the muscles. She said if it didn't work that time then I would have to go to the hospital to have it done (presumably with some form of anesthetic). However, my laparoscopy came through and I was able to have the smear test at the same time, whilst under the general anesthetic.

If they are unable to do it at the surgery due to it being too painful, then do talk to them about your options. Also, I have been successful in the past at the doctor's surgery by then using the virgin speculum. I mention this to them each time.

[TandE]

Oh I am glad you were able to get it done under general. I am still waiting for an appointment for an appointment to get a LAP... Virgin speculum... that's a new one. I shall ask about that. Thanks for the advice. Hope you are recovering well from your op.

[Palocapde]

Hi, I'm sorry you're having to go through this pain. It makes the whole ordeal so stressful and horrible. I was diagnosed with deep endo on both the front and back of my uterus about a year ago and its been an absolute nightmare. Painkillers do nothing for me so I kind of lost hope on medication a while back and have gone a more natural/holistic route.

For the smear test, since nothing seems to work for me and I wasnt aware you can ask for gas/anaesthetic until I read the replies from the wonderfully strong ladies above (thank you for this info), I've been using breathwork. It still hurts a lot but it helps me focus on something else while its happening and I do believe it kind of helps ease the pain somehow (kind of how they tell women in labour to breath in specific patterns and it helps them get through contractions). It also gives me a sense of control in a way. For example, when im on my way to the consultation and im preparing myself for the pain, it helps to know that I can always breathe through it and that I have myself to help me regardless of what happens in there, if that makes sense.

I also do ask the practitioner to please be gentle because its really painful and most try to accomodate.

I do both of these for internal ecographies and eco-dopplers which can also be very intense.

Im not sure if this is a super helpful answer for you but, as you can see, you're not alone and I wanted you to know that if you don't get the meds or the help, you can always turn to your breath. It may not be much but it does keep us alive so it cant be too bad.

Take care and good luck. I hope it gets better from here.