Hi Lauren,
Please realise that nobody can force you to be tested. I had the same issue as you with the doctors constantly asking. I threw letter after letter away! If you're adamant you don't want a smear you can call your surgery and they will take your name off their records (you can be added back on anytime if you change your mind -I never have!)
Hope this helps x
Hi Eliz, thanks so much for your thoughtful reply, I do appreciate all the info and you explain it so clearly. I fully understand you're not telling anyone what decisions to take. I'm with you on wanting to get the evidence out there to all women so we can make proper informed decisions and give informed consent to any screening test. Guess what - my smear test 'invitation' arrived yesterday! Will be putting my 'decline, thank you' decision in writing. Thanks for posting the helpful opt out info on here. The leaflet that came with it mentioned that some parts of the UK now will also test for HPV at the same time, as a trial or early roll-out of this. But it didn't tell you if that's happening in your area. Thanks again.
You're welcome...
Sarah, many women find that once they have the evidence and can make an informed decision, they stop worrying about this program.
Gone is the fear that every consult will mean pap test pressure, many feel empowered, finally in control of their own healthcare and body. I think that's why the evidence has always been hidden away, it's harder to fight back when you don't have the evidence, it's easier to frighten women, that made it easier to treat the test as almost mandatory for women. Screening has never really been presented as a choice for women, just for men.
The screening program has a high target to meet to justify it's existence and the expense...also, many make a fortune from these programs, especially excessive ones.
So keeping women ignorant and compliant meant steady business for these programs and a better shot at the screening target. Some GPs also get target payments for pap testing, a potential conflict of interest. (and an additional payment for capturing an unscreened or "overdue" woman) How can you be overdue for an elective test?
It's hard to understand how this shocking abuse of our legal rights and bodies could have been acceptable to so many and for so long, it says a lot about the way women are viewed by the medical profession. We need to change attitudes and that starts with women demanding to be treated better, like a competent adult, not a target
Best wishes
Elizabeth
I
I am a virgin with an imperforate hymen and I am being forced into a smear test . The
abuse I am getting is awful .
I was told it was no more painful than the
dentists.
Well my dentist doesn't ask me to take my
trousers off and my mouth is a lot bigger
than any vagina .
Even a filling isn't painful, but smear tests
sound agony
Also dental bleeding is controllable with
tissue ...what if the vagina bled....vaginal
bleeding would be awful.
I would have to ask, how old are you? Your age is important. Also, are you having any symptoms the doctor could be concerned about? As for bleeding, do you have periods? I mean, if you are old enough to have a menstral cycle, you know we do bleed. I am not trying to say you have to do this, I am a 58 year old virgin who has had many tests done, but feel that every year is just not necessary for me. But, if there was something I was truly worried about, then I would do what had to be done. So, all these factors are important.
I am 49. I have not had peiod as my hymen is imperforate. I am
a regular blood donor and feel fine
and run 5 miles after donation
I know women who cant do that
on a period so surely they must
lose more. I am really healthy.
This isnt easy . I am a virgin and I was still told I needed a test even though my vagina is imperforate. The test is an easy one for doctors to 'tick boxes' and get an incentive payment . It preys on female vulnerability too which is wrong .
The worst response I got was when I said that routine opticians appointments detect more cancer than does cervical screening (which is true , think of brain cancer) I got told ...'but it doesnt find cervical cancer' . Cervical cancer is overhyped in media . Think what screening tests you really need ...eg what diseases do your parents and grandparents suffer from and thus you might be prone to .... and say that is what screening you want and not tests for low risk screening . This might show you are thinking carefully about your health.
If you are confident you could ask your doctor to calculate your risk of cervical cancer as it depends on whether you smoke and the number of people you have had sex with... be strong
Interestingly today i was told that mouth cancer is as common as cervical cancer yet screening isnt as hyped up. However not everyone visits the dentist for regular check ups that would detect it ( as well as finding fillings etc) .
Maybe mouth cancer should be the screening programme ...after all nobody could say a soft brush in your mouth is uncomfortable could they .... at least i hope everyone brushes their teeth ...even a drill isnt uncomfortable compared to a smear test
Interstingly my dentist never sends reminders (though I do go twice a year) but the pesky cervical screening programme does
Lauren I am on the same boat as you. let me share with you something humiliating and traumatic that happened just yesterday. I am 24 and I've never had a Pap smear and I've been avoiding it. The first time I couldn't go through it had an anxiety attack but the doctor who was male was very understanding and told me that it was okay and to take it when I'm ready. I've haven't been sexually abused but I was in a relationship where my ex would pressure me to have sex but I had it in my head it was going to hurt etc. So maybe I programmed it in my head and whenever I get touched I jump and want to die. Well I tried to get over it and made an appointment yesterday. I was anxious for days and couldn't sleep but I was going to take my now Fiance to come I mean I needed someone to hold my hand etc. I made an appointment with a female doctor because it may be less painful but I couldn't stop shaking. To make it worse the doctor called me a chicken and made fun of me because I brought my fiancé. She would make remarks like "is the whole family here for this ever?" I ignored the comments but since I told the nurse it was my first time I expected her to walk me through the process and make it less scary. she didn't say anything and when I asked her to give me the smaller spectrum she said " this is the smallest so it won't hurt" She was inserting when I cried and she it hurted . She got angry and said that all her patients have never felt this way. She asked " have you been raped? And asked my fiancé " do she complain like this while having sex?" Well she tried again and I really tired hard to do it but she got irrititated and said look I have patients we are done. I asked my fiancé to come get her and she said she was busy. I started to cry even more because she made me feel like a chicken and ashamed that I couldn't go through it. I'm still crying as I'm writing because I don't know if I will get over this experience.
Ally,
It's even simpler than that....HPV-...then you're not at risk of cc and can't be helped by pap tests/smear tests.
HPV+ and aged 30 to 60 and there's a small chance of benefiting from a 5 yearly pap/smear test
Smoking is possibly a risk factor for HPV+ women developing cc, we know most HPV+ women DON'T develop cc, the HPV clears in a year or so. Some say the small number of HPV+ women who develop cc have something else at work...it might be HPV+ and smoking or HPV+ and a compromised immune system or multiple strains of hrHPV, we don't know for sure, research continues.
Of course, smoking is a risk factor for lung and other cancers, and lung cancer is FAR more likely than cervical cancer, the latter has always been fairly rare. Lung cancer is the No. 1 cancer, yet thanks to the misleading hype many women fear cc and not other cancers and diseases that they're far more likely to develop.
I don't have pap testing at all, HPV- women cannot benefit, end of story.
If you've never had sex or been sexually active, pap testing can only harm you. The evidence does not even support pap testing for sexually active women before they're 30.
There is a far easier way, if you choose to test and yes, it's elective, like all screening tests - you can self test for HPV when you turn 30, about 5% of women aged 30 to 60 will be HPV+, these are the only women with a small chance of benefiting from a 5 yearly pap test.
Having unnecessary pap testing exposes you to the risk of false positives, excess biopsies and over-treatment.
Take a look at the evidence backed Dutch program: 5 HPV primary tests or HPV self-testing at ages 30,35,40,50 and 60 and a 5 yearly pap test is only offered to the roughly 5% who test HPV+
It should be as straightforward as that...but of course, that makes a lot less money for vested interests, so some countries will never see evidence based testing. Screening in some countries is about profits, not healthcare.
Hi,
So glad to have found this forum! Just wanted to check I have understood all the info correctly if that's OK. If a person is HPV negative does that mean there is no risk for cervical cancer? I'm 41, been with my husband for nearly 20 years but had other partners before him. Never had an abnormal result from a Pap smear. I am interested in doing the home HPV test but not sure who are reputable companies - I live in Canada. Thanks in advance 😊.
Hi
I found this an interesting forum to follow. Once in my 50's smear tests became increasingly painful and finally impossible at my GP surgery. I strongly considered saying "no more" but was persuaded to attend the Centre for Women's Health at my local hospital. This was 9 years ago.
The Consultant diagnosed an atrophied vagina, which together with a tilted twisted pelvis made the test impossible whilst I was conscious. I understand that the atrophy is one of the reasons why older women find the procedure so uncomfortable. The test was carried out under a general anaesthetic and I was so glad I had it done. The result came back with pre cancerous cells and HPV positive, even though I had not been sexually active for over 30 years.
I was successfully treated and it was explained to me that as I was HPV positive, I had a 1 in 6 chance of a recurrence. I had to have an annual test under a GA each year, with, I was told, increasing difficulty for the surgeon. Last year I was told I was finally HPV negative which meant that the chance of recurrence was now less that 1%. So I have had my last ever smear test!
So Alex I hope that answers your question about HPV. A smear test is a choice, but had I not chosen to keep trying, I might not have been here to post on this Forum.
Hi Alex
That's right, HPV- women are not even offered smear tests under an evidence based program, the Dutch only offer a 5 yearly pap test/smear test to the roughly 5% of women aged 30 to 60 who test HPV+
Australia will move to HPV primary screening this year and we'll also focus on HPV+ women. (unfortunately, we'll block HPV self testing for 6 years trying to force women into the invasive HPV test, which is like the smear test AND we'll start HPV testing from age 25, the evidence says not before 30, lots of young women, about 40%, will test HPV+, these are transient and harmless infections that would clear naturally, so we'll continue to worry and harm our young women under the new program)
HPV testing should not start before age 30 and then 5 tests in total is enough, some women might choose to have just one.
Here in Australia our new program will again be excessive, 10 HPV tests when 5 would do...
You can easily and reliably test yourself for HPV, no need for a painful/uncomfortable speculum exam.
HPV- women who are no longer sexually active or who are confidently monogamous might then choose to withdraw from HPV testing altogether (unless their risk profile changes like taking a new sexual partner)
Women will rarely be given the choice though, the medical profession think it's safer to continue testing just in case a man in unfaithful - I think that's our call.
I'll send you a link by PM to a forum, there are Canadian women on that forum and they can give you the names of HPV self-tests available in your country,
The Dutch self-screener is very reliable and now available in many countries, that would be the best option if you can get your hands on it.
Felinia
You didn't need a GA at that stage, you should have been offered HPV self-testing, then with the HPV+ result you could make an informed decision and might choose to have the smear/pap test at that stage. MOST women are HPV- (about 95% of women aged 30 to 60) so the HPV self-test would confirm that fact avoiding the need for anything else.
If you'd come back HPV- you would have had an unnecessary GA, you could have obtained your HPV status using a HPV self test.
Older women often find the speculum exam incredibly painful, if they want to test they should be offered HPV self testing, it's reliable and most tests are easy to use. Many older women stop testing because they can't tolerate the speculum exam. it's disgraceful that HPV self-testing is not offered as an alternative. I'm sure this is because they know most women would prefer that option and they'd rather push women into the program.
The speculum exam can leave older women bleeding, sore for days and even cause damage - also, UTI's.
About 95% of women aged 30 to 60 ARE HPV- so a simple self-test gives you very important information - HPV+ and you have a small risk of cc and have a small chance of benefiting from a 5 yearly pap/smear test, (until you clear the virus)
HPV- (like MOST women) and you're not at risk and cannot benefit from smear/pap tests.
It's a disgrace that this option is not given to most women.
Also, almost all "pre-cancerous" cells do not progress to cervical cancer but a HPV+ women (aged 30 to 60) with a smear test/pap test that's CIN 3 (and sometimes CIN 2) is usually treated.
All the best...
I'm in the UK where all women over a certain age are routinely offered a smear test every 3 years. This is the standard protocol and they can choose not to accept. I don't know if HPV self testing was available in the UK in 2008 when everybody had failed to do a standard smear test on me whilst conscious. The earliest date I have heard of self testing being available in the UK was 2014.
I had certainly never heard of HPV until 2013 when after 5 years of clear smears following 2 LLEDZ (?) treatments, the hospital wanted to sign me off. (I didn't make that clear in my original post when I re-read it). They only did the first HPV test as an afterthought during the 2013 smear, which is when I got the positive reading. I got called back by the senior Oncologist with no explanation given. Needless to say this scared me silly, but he only wanted to explain why he would not sign me off. This was then repeated annually with the smear test until the clear result in 2016. My Consultant told me in over 30 years he could count on one hand the number of women where smear testing was only possible under a GA and I was one of just two on his current list.
Had I had the HPV test and a positive result in 2008, as I understand you, the pre cancerous cells would never have been looked for, let alone found? There is a family history of cancer - my mother and brother both died from it - so that is one ticking time bomb I am glad was found and dealt with.
I do agree with you though that information about HPV self testing should be much more widely publicised and the option made available to women. It certainly isn't here in the UK - none of my friends in the 65+ age group had heard of it. Whether I could have self tested I don't know, I can't even insert pessaries or applicators with vaginal cream any more, such is the atrophy and twisting. But I am the anomoly, not the norm.
It's water under the bridge for me now though. Best wishes
Lauren
Thank you for your post. It is alright for Doctors to remind us about this important test but not to nag us. I don't know how the how the UK system works but in Australia we have a National Pap Smear Register which reminds you when you are over or due for Pap Smear. Just one letter is ok. The test itself is important as long as you have been sexually active at some point. I have been having these tests since 2005 though l last had sexual contact about 2 years ago. My results have always been negative until two weeks ago l was called by the GP after my results indicated some cell changes. Luck enough it's minor/ moderate and l have decided to have a total abdominal hysterectomy before they become active cancer cells. Aren't l lucky?
As for the nagging GPs, l would either switch over to another one or report them the their Proffessions council.
Hi Revesay
I'm in Australia and I'd be appalled if a medical professional would agree to do a full. hysterectomy for "abnormal" cells. If that was carried out for every woman who had "abnormal" cells, most women here would be wothout their uterus!
The lifetime risk of a colposcopy and biopsy here is a huge 77%, the cancer has a lifetime risk of 0.65%...our over-screening program, which starts far too early and tests too often and for too long provides no additional benefit to women, but produces lots of false positive pap tests and very high over-treatment rates.
Our new program will be better, but still side with excess, our young women will continue to suffer under the new program, long-standing evidence says HPV testing should never start before 30, we'll start at 25, that means about 40% of young women will produce a HPV+ result and probably be referred for colposcopy/biopsy. We know these early HPV infections clear within a year or two, by age 30 the 40% who test HPV+ is down to about 5%
For a start, are you even HPV+?
If not, you're wasting your time with pap testing, biopsies etc.
ONLY HPV+ women aged 30 to 60 have a small chance of benefiting from a 5 yearly pap test (until they test HPV-)
If you're HPV+ and aged 30 to 60, it will depend on your CIN rating, even CIN 3 is usually treated by cone biopsy not hysterectomy, most CIN 3 does not progress to cc, but everyone is treated.
CIN 2 is often treated too, CIN 1 should not be treated, women usually re-test in 12 months time.
Lots of things can produce and "abnormal" pap test - infections, inflammation (from condoms or tampons) hormonal changes during menopause or pregnancy, trauma (childbirth, rough sex/toys etc)
and even perfectly normal changes in the young and maturing cervix are often picked up as "abnormal" changes.
So I'd urge you to get a second opinion before you agree to a hysterectomy.
I don't consider the test important at all (for me) but I can understand why HPV+ women aged 30 to 60 might decide to test, they at least have a small chance of benefiting.
It doesn't matter whether you've been sexually active or not, the testing should focus on those women who test HPV+ and are aged 30 to 60. You can be very sexually active, but if the woman is HPV-...then she's not at risk of cervical cancer.
So it's only about 5% of sexually active women aged 30 to 60 with a small chance of benefiting from pap testing.
Also, you can check your own HPV status, there are HPV self testing kits available online. HPV- and you're fine, HPV+ and aged 30 to 60, there's a small chance you might benefit from a pap test.
Note: MOST abnormal cells do NOT progress to cervical cancer
Hi Eliz
Thank you for your communication. I am post 5 years menopausal, last sexual activity 2 years ago. After the results got Clindamycin treatment ( vaginal) for 7 days. Still the lesion did not disappear which means it's not infection. I don't want a biopsy because l don't need the uterus anymore and l don't want to take chances of that small " might progress to cancer".