To never have another smear test again.

[Whiskyinajar]

Today I went for my first smear test in a decade ....I've never found them easy and today was no exception. In fact today the smear test couldn't be done as I was in so much pain and it was so uncomfortable that the nurse could not even open the speculum. She did say that she could just about visualise my cervix and the visually it looked healthy.

I'm 55 and I've been through several smear tests, I've never found them easy. I am a survivor of childhood sexual abuse and I have vaginismus hence all smear tests being horrific..

I left the health centre today feeling a failure which I know isn't a logical feeling, I know I am not a failure and that the issue is psychosexual.

However in terms of risk factors I am low risk. I've only ever had two sexual partners and I am a non smoker and always have been.

I'm going to write to my GP and tell her I am opting out of further smear tests.

The nurse today said they would refer me to gynaecology as they may have more success. Tbh I will not allow anyone near me with a speculum ever again unless they sedate me first.

I'm also looking a self testing kits which the NHS don't recommend, however I know in North London there is a current study looking at self testing kits and that these are used successfully in parts of Europe.

Tempted to order one and just share the result with my GP.

Help! Anyone else been in this situation.

No sexual contact from 2016-2020.
Negative smear in 2017
HPV + Cin 1 in early 2020.
The HPV can lay dormant for years then become active. Cell changes are also possible without HPV infection.
I'd ask about sedation and have the smear.

Yes - I get the home self-testing kits which are the one available privately via BUPA and never have to go for a smear now. I can’t tell you the stress it used to cause me. I literally couldn’t sleep when I got invitation letters; I had to drink in order to attend appointments.

I opted out years ago.

Expect letters, phone calls, and appointments to be made for you to discuss why you want to opt out. It appears to be nhs policy.You don't have to respond or explain why.

Sorry you find the experience so difficult, with what you have been through.

Just regarding the HPV, this can lie dormant for many many years! I've had smears since I was 17 (33 now) and happily married.. and 18 months ago tested positive for high risk HPV requiring treatment. Just wanted to say don't rule out that you can never get it xx

You are not a failure you are a survivor

In your position I would also opt out of smear tests.

There are around 3,200 new cervical cancer cases in the UK every year. There are around 850 cervical cancer deaths in the UK every year.

www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/cervical-cancer

These numbers look really tiny now, don't they?

It's not right that the whole female half of the population are coerced and guilt-tripped into allowing the NHS access to their vaginas at regular intervals in order to save 850 lives a year.

The cervical screening programme has failed to take into account the harm caused to women from smear tests and the further harm caused by 'just in case' treatment.

If the NHS cared about women's health, including our mental health, then they would do an HPV test first and only if that was positive would they proceed to the invasive smear test which is traumatic for a huge number of women.

As it is, they do the smear test first on all women and then do the HPV test. If the HPV is negative they don't bother looking at your smear - you've gone through all that for nothing.

The NHS seems to think it's completely normal to have access to women's vaginas and that women who object just need educating better.

Men would not put up with this kind of shit.

The idea that women should be prescribed valium in order to cope with this bullshit is obscene.

Here's one piece by Dr Mccartney

www.independent.co.uk/life-style/health-and-families/features/why-i-m-saying-no-smear-7577967.html

I think GPs get extra funding for screening, hence they hassle you.

I politely said this to my GP once and she was so furious she kind of hairdryered me out of the room but she didn't deny it.

@LangClegsInSpace 👏👏👏👏

This is news to me, I’m shocked. If there are less invasive tests that they could do first or even better we can do and send off. I’ve been housebound for years in the past (younger disabled adult) and NHS simply refuse to do any kind of health test at home that they could reasonable like a smear test. I’ve just had to miss out.

[quote PanamaPattie]@LangClegsInSpace 👏👏👏👏[/quote]
More 👏👏👏

The numbers won't look tiny if they happen to you!

My SIL died from cervical cancer. It was horrific. She was married to my brother for over 25 years and their children no longer have a mother. Do not think it can't happen to you because you only have one partner now. Please do anything to get checked regularly.

@Akire

This is news to me, I’m shocked. If there are less invasive tests that they could do first or even better we can do and send off. I’ve been housebound for years in the past (younger disabled adult) and NHS simply refuse to do any kind of health test at home that they could reasonable like a smear test. I’ve just had to miss out.

I'm not sure if HPV tests are available on the NHS but I'm sure someone here will know.

I opted out but still continued to be sent letters etc . Hopefully they have now stopped as I am 63.

@SnackSizeRaisin

I imagine the treatment for cervical cancer would be FAR more invasive and stressful for you

That's not a helpful comment, is it. The smears don't actually prevent cancer you know. Also, false positive smears lead to unnecessary investigations which is an acknowledged downside of the screening programme.

OP - the screening programme is every 5 years at your age and stops at 64. So if you were to have this one, you would only be called for one more. Or a urine test for HPV could be another option to discuss with the GP (may have to do privately).

clearly they don’t prevent cancer

Oh gosh OP my last smear was barbaric...had to asked them to stop and go back a few days later. Started menopause in between last 2 smears and jeez it hurt. 2nd nurse told me 1st nurse should have used a smaller specular to take the sample as that is what they always use on menopausal women but the first nurse obvs didn't get that memo.

I completely understand you, and feel your pain. I had my first one in a long time recently and it was terrible. My cervix is 'apparently' tilted completely backwards - I couldn't have my DC naturally, all CSs, and every smear / coil appt is a test of agony and despair. Latest one - took three goes before she could finally find it, and I was sobbing by then. Still - I have to say I'd rather go through it and be cleared than the worse option. I hadn't heard about the self-test options before tonight, so thank you pps for posting, and to you OP for posting - I hope you're okay now.

Op you are always within your rights to refuse testing or intervention of any sort. I absolutely stand by any persons right to make that choice. However my best friend is in the last 3 months of her life due to cervical cancer. She won't survive, they cannot help her, it will be horrible. She is under 40, healthy, less than 5 partners and only 1 in the last 15 years.

In your position but with my experience of my friend's journey I would not refuse screening, instead I would insist really loudly that they find a way to do your screening in such a way it does not cause you pain and trauma. You have a right to be screened and you have a right not to have to "put up" with it or "grin and bear it". They should be accounting for and meeting your needs rather than hoping you'll make it easy for them (by suffering yourself). Don't let them, it's simply not acceptable.

Oh, and a quick note to poster's saying "opt out so you don't get letters" etc, the NHS removed my cervix some years ago. I still get invites. I rang after the first one to point out the waste - but I still get them. 🤷‍♀️

@Spied

No sexual contact from 2016-2020. Negative smear in 2017 HPV + Cin 1 in early 2020. The HPV can lay dormant for years then become active. Cell changes are also possible without HPV infection. I'd ask about sedation and have the smear.

I have not been going for regular smears, I have only ever had one sexual partner and just didn't consider myself at risk. Just before Christmas I has some post menopausal bleeding and the Gynae clinic did a smear and I was absolutely shocked that it came back all fine, no signs of cancer but I have HPV. Had I known I was carrying the virus I would have made sure I had regular smears as I know it can predispose to cervical cancer. Any way I'm glad I've had one now. It was bloody painful too though but they said I have cervical stenosis, so I wonder if this was a contributory factor ?

I completely empathise . I was raped by my sons father and this has made appointments like cervical smear very hard , causing years of delay . You are not to blame for this and you have not failed . The appointment times are far too regimented and you need a lot longer to feel safe and comfortable. Please try to book a double appointment and it’s good that staff are able to know why even if you say anxiety rather than the awful abuse you have endured . Don’t give yourself a hard time for not being able to complete today’s smear test . You have plenty of time and you deserve to be in control .

Thinking of you xx

@Luckingfovely

I completely understand you, and feel your pain. I had my first one in a long time recently and it was terrible. My cervix is 'apparently' tilted completely backwards - I couldn't have my DC naturally, all CSs, and every smear / coil appt is a test of agony and despair. Latest one - took three goes before she could finally find it, and I was sobbing by then. Still - I have to say I'd rather go through it and be cleared than the worse option. I hadn't heard about the self-test options before tonight, so thank you pps for posting, and to you OP for posting - I hope you're okay now.

Yes they said I have a retroverted uterus too, I wonder if that was why mine was so painful and difficult.

I know one person who died from cervical cancer, it was a horrific horrific thing and a smear could have saved her life, and a lot of trauma for her family.
I can imagine it's awfully hard in your position and I don't envy you, but I would look into sedation/some kind of specialist that deals with people in your situation rather than not having them at all.

@Ironmanrocks

The numbers won't look tiny if they happen to you!

My SIL died from cervical cancer. It was horrific. She was married to my brother for over 25 years and their children no longer have a mother. Do not think it can't happen to you because you only have one partner now. Please do anything to get checked regularly.

No, the numbers won't look tiny if they happen to you because you are very understandably not focused on the numbers. You care about your loved one and her family and everyone who knew and loved her and anything that could possibly have been done to save her.

Nevertheless, I think it's unreasonable to expect half the population to be subjected to extremely invasive screening tests, on a regular basis, in order to save 850 lives per year, especially as far less invasive options are available.

I’ve only had one so far and it was a horrible experience.

I told the nurse at the beginning I’m extremely squeamish so it would be great if she could just do it without explaining any gory details to me. Apparently I have a strange shaped cervix and it was unbearably painful. Then she started trying to show me pictures of it and I passed out.

When I came round she was almost angry with me and kept asking why I’d fainted. Errr I did warn you

We'd lose a lot more women if we didn't do smear tests. Early detection is key to survival. I would ask for drugs and for a GYN doctor do perform it. You need someone to have the time to make you comfortable. And Valium does really help.

Prostate cancer is quite high yet the uptake for examination is quite low.
Yet you never hear of men receiving letters, phone calls and appointment to discuss their reasons for non-attendance.

@LangClegsInSpace you've got those statistics wrong, the smear isn't saving 850 lives, if 3200 new cervical cancer cases but 850 deaths the cervical screening may well be saving 3350 lives, the women who are diagnosed but don't die are the ones being picked up early by screening.

That's probably over simplistic because some of the women picked up may have other symptoms and some of the women who sadly died may have survived longer than they would have due to screening.

It is still correct that a kinder less invasive approach is needed and that the numbers are relatively small compared to the size of the screening program.

They found a cervical polyp last time I had a smear, a year later I finally had a gyne appointment where they tried to remove it under local anesthetic, which was horrible and failed, gynecologist said they used to only do the procedure under GA, but they now tried LA as some women could tolerate it. I can't understand now I'm reflecting why they would be injecting the cervix rather than doing an epidural? Anyway that wasn't an option and I'm having general anesthetic next week.

Apparently it's very unlikely to be cancerous, but they always operate just in case. Simultaneously nothing at all but potentially awful.

I didn't know about HPV testing. Interesting.

I really passionately feel we deserve better medical care than we get. I'm not sure if it's the NHS or medicine more widely.