wish they'd leave me alone

I so understand the feeling, I had letters for three years before I finally felt I had to go. I felt that if I didn't go, the fear would block other sexual enjoyment with men later. I was a virgin and I felt that it wasn't made clear that the test is far less necessary for virgins. The letter was slanted towards the idea that if you didn't go, you would be scared.

The letters kept coming and they made me nervous all day, I felt cornered, if I didn't go there was a 'threat' of pre-cancer or other problems and if I did, there was a horrid clinical letter and being seen very intimately by a doctor or nurse I hardly knew. Not even my parents or anyone had seen my private parts and yet it was assumed that if a 'doctor/nurse' asked you to show your private parts you will. That process drives women away from going which is the NHS' complaint.

I really think that for first-timers, the letter should make a pre-smear appointment as standard for nervous women to have a talk and meet their doctor/nurse and discuss their gynae issues. After all some young people don't visit their doctor much and so a pre-smear talk would not be asking much and the automated chat would help bridge the nerves gap and build a relationship.

Happily in the end my first smear went very well and smoothly, the nurse was calm and pro if a bit quiet and I had done a lot of exploring and homework beforehand.

If you've never been sexually active, you don't need smears and I'm amazed they still tested you without advising you of your minute risk of cancer and the high risk every woman takes having screening.

Informed consent is not respected by doctors with screening tests directed at women and that is not only unethical, it's illegal. Informed consent is a legal requirement.

The risk of this cancer is low and minute for a low risk woman.

This test is unreliable - even with 3 yearly testing, 65% of women will have a colposcopy and biopsies and only a very small number will have any sign of malignancy. False positives and unnecessary biopises are very common and some women are left with health problems.

Women are not given the facts and the lack of respect for a woman's right to choose is outrageous - we're not children and have a right to make our own informed decisions about screening.

A doctor removing you from his patient list and bullying you needs to be reported to the Medical Society. I'd also consult a solicitor.

Doctors must be told once and for all that this sort of treatment must is unacceptable and must stop - pap smears are not a law, they are supposed to be offered to women with all relevant information, including risk information, and the decision left to us.

I'm so sorry you were put through smears when you had no chance of benefiting.

I'm Australian and have always refused pap smears - my husband and I were not sexually active before we got together - I have a tiny risk of this cancer and am not prepared to accept the very high risk of an unnecessary biopsy.

This is an area of medicine that must be challenged - a doctor would never treat a male in this way. Forcing a penetrative vaginal exam can lead to lasting psychological damage on top of the risks of testing.

I agree that a person's body is their own - male or female. However, what people need to understand is that the increased awareness of smear testing is down to a changing population with more people having sex at an earlier age and with more sexual partners as well trying to help people look after themselves.

I started to have smear tests after one year of being sexually active and it has never been painful, humiliating or been bullied into it. I had treatment for pre cancerous cells, which could have saved my life if I had not gone and just left it. I find it odd that people see it as humiliating...after all, childbirth is far more humilating with a complete change to your anatomy and no control of bowels and bladder in labour! There is nothing humiliating about a smear test unless the healthcare professional ins entirely unprofessional. Maybe people need to view sexual heaith and GUM differently - everyone has a diffrerent attitude to their own body and maybe mine is that I see it odd when people think something like this detrimental to their pyschosocial health. cancer is far worse trust me.

You make your own decision at the end of the day but I would just like to add that cancer hits people who are virgins as well - it doesn't discriminate and a smear test is not just for sexually active people - see NICE guidelines. The risk is lower, sure but its there all the same. Pros and cons I'm sure but for a 5 minute test like putting in a tampon it beats a 6 week course of radiotherapy.

\"I started to have smear tests after one year of being sexually active and it has never been painful, humiliating or been bullied into it.\"

I'm sorry but have you ever refused a smear? As a experiment, next time you're offered one say 'no'. I think you might very quickly find the bullying starts. The first poster WAS THROWN OFF HER GP PRACTICE LIST FOR NOT SCREENING - does that sound to you like they gave a d*mn about her health? It happened to me as well, and I'm still dealing with the aftermath of a non-gynae health issue which wasn't dealt with in a timely manner as I had no GP.

From reading the various UK cervical screening leaflets it seems that the rate of cervical cancer per year in the UK would be around 6000 women (if you add the cases prevented by screening to the cases that actually happen). 6000 cases across a population of 30 million women. Around 100,000 are diagnosed with abnormal cells (far more than would ever develop the cancer). To put it in perspective, I believe breast cancer is around 45,000 cases per year. Prostate cancer in men is around 35,000. A virgin's chances are developing this illness are extremely remote. To be honest a sexually active woman's chances aren't actually that high. If the virgin is comfortable with screening fair enough, but inflicting pain and stress on someone who doesn't want to be screened and is a very very low risk, without informing them of that low risk, isn't good healthcare. It's target hitting. Would you have liked YOUR virginity to be effectively 'taken' so some GP practice can hit their 80% screening target, for an illness you had little chance of developing?

Sorry to rant, but the reason you've had no problems with being screened ND is because....you've had no problems while being screened. No pain, no unprofessonal staff, no emotional, gynaecological or sexual issues (or none that you've mentioned) you had the benefit of a year's sexual experience before screening, and you went of your own free will because you obviously felt it was the best decision for your health. Please consider the possibility, just the merest possibility, that not everyone has been as fortunate, and those that have are right to be very, very wary of a screening programme which has treated them, and their health, with utter disrespect.

Virgins don't need pap smears - you need HPV in your system to get this cancer, a sexually transmitted disease.

Even sexually active women only have a tiny risk...our bodies get rid of HPV infections in most cases...only a tiny minority of cases go on to cancer.

Sadly this test is very unreliable...

Thousands of women have treatment for \"pre-cancer\" or \"dysplasia\"...what they don't know is the chance that could go on to cancer is less than 1%....but with three yearly screening 65% of women will face colposcopy and some form of biopsy. It's the unreliability of the test and the huge amount of over-treatment that has convinced so many women their lives were saved by the test. The reality is they a much more likely to have had unnecessary treatment. Young women produce huge numbers of false positives.

Testing under 25 is a very bad idea as 1 in 3 smears will be abnormal, not because of cancer (which is incredibly rare in this group) but because our bodies are changing over those years and this is picked up as abnormal. For this reason screening is not offered before 25 in the UK.

The risk of this cancer is tiny for sexually active women and virgins and women in lifetime mutually monogamous relationships should be very careful with this testing - the risks for you are very high as you have a near zero chance of this cancer.

Testing too often is also bad - Finland has the lowest rates of cervical cancer and the lowest false positive rates - they test 5 yearly from 30 and women only have 5-7 tests in total.

In the States doctors have been negligent with screening and you'll find lots of 60 year old women who've had more than 50 pap smears in their lifetime. Annual screening sends 95% of women for colposcopy/biopsies.

Remember 99.35% of women don't benefit at all from smears (incl 0.35% who get false negatives) This massive over-detection is to help 0.65% of women.

If you have smears the risk doesn't drop to zero anyway...the test also produces false negatives...so testing reduces the risk from something like 0.65% to 0.35%. That's why your risk profile is so important.

We've never been told the truth about this testing. I don't have testing, but I demand honest information for all women.

If you're interested in the facts, go to Dr Joel Sherman's medical privacy blog and under Women's Privacy Concerns you'll find a treasure trove of facts - all the things that doctors have hidden from us.

(Stats taken from DeMay, Richard, \"Should we abandon pap smear testing\" American Jnl of Clinical Pathology 2000)

Dr Angela Raffle, UK cancer screening expert says that 1000 women need regular screening for 35 years to save ONE woman from this cancer or a nurse doing 200 smears every year will save ONE woman every 38 years. Over that time a woman will die despite screening (false negative) and a large number of women will have unnecessary treatment for false positives.

Of course, before screening, mouth cancer occurred as frequently as cervical cancer, both uncommon....isn't it funny that now many women fear cervical cancer, but no one gives mouth cancer a thought? Screening has created a fear that is totally out of proportion to the tiny risk.

You'll find the references at Dr Sherman's site.

To the poster removed from her doctor's records:

Dr's cannot demand or coerce you to have cervical screening. Your informed consent is required BY LAW.

Report your Dr to the medical association...DON'T let doctors get away with this poor conduct.

Sadly, our Govt pays doctors to reach targets for cervical screening and this has resulted in unethical conduct.

I'd speak to a solicitor if a Dr tried that with me (and report him to the medical association)

You're correct, women not yet sexually active don't need smears, you accept high risks having them for no benefit.

I'm a low risk woman and I've made an informed decision not to have screening - the risks exceed the benefits for me. Every woman should assess her level of risk before agreeing to testing - it has risks!

I can see why a high risk woman might choose to screen, she has a 1% risk of cancer and that goes down to 0.35% with screening - you'll never get rid of the risk entirely because the test is unreliable and produces false negatives as well as false positives.

Prevention is important too - start having sex as late as possible (hopefully eighteen), limit partners, insist on a condom with a partner of unknown STI status (reduces the risk of HPV infection by at least 70%...if not more) & don't smoke.

Women in lifetime mutually monogamous relationships are also unlikely to benefit from smears.

No woman needs screening more often than 5 yearly from 30 - 5 to 7 in total - even prostitutes in the Netherlands only test 5 yearly from 30 and they are a high risk group.

Of course, every woman is entitled to make her own informed decisions about screening, it should be your decision, not your doctor's decision.

To the poster removed from her doctor's records:

Dr's cannot demand or coerce you to have cervical screening. Your informed consent is required BY LAW.

Report your Dr to the medical association...DON'T let doctors get away with this poor conduct.

Sadly, our Govt pays doctors to reach targets for cervical screening and this has resulted in unethical conduct.

I'd speak to a solicitor if a Dr tried that with me (and report him to the medical association)

You're correct, women not yet sexually active don't need smears, you accept high risks having them for no benefit.

I'm a low risk woman and I've made an informed decision not to have screening - the risks exceed the benefits for me. Every woman should assess her level of risk before agreeing to testing - it has risks!

I can see why a high risk woman might choose to screen, she has a 1% risk of cancer and that goes down to 0.35% with screening - you'll never get rid of the risk entirely because the test is unreliable and produces false negatives as well as false positives.

Prevention is important too - start having sex as late as possible (hopefully eighteen), limit partners, insist on a condom with a partner of unknown STI status (reduces the risk of HPV infection by at least 70%...if not more) & don't smoke.

Women in lifetime mutually monogamous relationships are also unlikely to benefit from smears.

No woman needs screening more often than 5 yearly from 30 - 5 to 7 in total - even prostitutes in the Netherlands only test 5 yearly from 30 and they are a high risk group.

Of course, every woman is entitled to make her own informed decisions about screening, it should be your decision, not your doctor's decision.

I have long ago dismissed this test. Many women in the UK react with horror if you confidently affirm that you're not going to have this test and brand you as unresponsible or the like. The attitude infuriates me because it is my body and my problem, not theirs. If only there was more encouragement for men to have screening for STI and STD tests and to take responsibility for their own health as well as their partners, I'm confident women would have much fewer gynaecological problems :-@

I do not care for those who may try to dissuade me from making an informed adult decision. Cervical smears are not conditional upon you simply because you are a woman, and I will not be made to feel guilty about it. I have never felt happier, more empowered or proud of myself, as when I communicated my decision in writing to the so-called Local Health Board, who am pleased to say have never pestered me since, nor has my GP.

I don't have a problem with smears in principle, if I decided I wanted one due to symptoms of potentially pre-cancerous cells (and many women do exhibit symptoms, no matter what the Propogandists tell you!), I would like to go of my own accord. What I cannot for the life of me tolerate is being bombarded with letters asking you to go repeatedly. No wonder many women get irrated! They seem to treat women like children. Ignoring one or two is a clear indication to anyone with half a brain, that they do not want to attend. In some countries, some \"defaulters\" even get a visit from the district nurse and this was also the case in the UK until about 10 years ago...

Luckily, things on that front in the UK are changing. GMC have reiterated the principle that practitioners must accept the word \"no\" when communicated to them, they have also stopped screening women under 25, therefore reducing countless needless false positives leading to biopsies.

The evidence for this test speaks for itself. It is simply unreliable. It doesn't detect cancer. It detects cell changes, of which the vast majority would return to \"normal\" of their own accord. I find the whole \"abnormality\" tag extremely false and misleading if I'm honest. Practitioners cannot distinguish which cell changes, often caused by HPV, would result in cancer and which would not. Angela Raffle (2005)'s study says that in order to save just one life, 1,000 women would need to be screened for 35 years snd that in an unscreened Australian population, the risk is 0.58%. Even the UK's professional Programme says smear takers are very unlikely to see a SINGLE case of cervical cancer in their professional lifetime!!! Can you believe this? The NHS Screening Programme virtually corroborating how poor value this test is. You need only look at their statistics, out of the 4.4 million invited for screening, the Programme estimates that 1,000 lives are saved annually. Yet, as they cannot positively distinguish pre-cancerous cell changes from non pre-cancerous changes, this 1,000 number is even questionable. Another study puts the figure as low as 800.

Bearing all this in mind and the fact that even irritations to latex can affect cell changes, one may question how credible this test actually is.

It certainly has diminished in my opinion and the low numbers cannot justify the numbers of women experiencing needless anguish at the result of \"abnormal cell changes\" and damaging coloposcopies with themselves and their families worrying as to whether they will live to see their children grow up!

Is is a shameful debacle and women and potentially their families are being treated as commodities in order to further enhance the aims of practitioners and those able to make a quick buck out of this scheme. I am very pleased that I have decided not to participate in this scheme as all my doubts about it appear to now be corroborrated (just see Prof. Michael Baum's article for starters), however I look after myself in other way

I think it is terrible that anyone should be bullied in this way. get rather tired of the (usually male) doctors who are so dismissive of intrusions on a woman's privacy. Breast cancer? Lop off a breast. Uterine cancer? Whisk the whole lot out. I'll bet if it were a case of having their penises or testicles removed or tampered with they'd soon come up with a better idea!

But, setting aside the male/female issue, it is everyone's right to choose what to do with their bodies. If they know the risks and are prepared to accept them, that should be the end of the matter. I personally have no intention of ever having a smear test again. The last one I had was done by a patronizing nurse who talked to me as if I were a particularly stupid five-year-old. And it hurt. A lot. And when I complained, she said it was my fault, as I was older my vagina was probably dry! nothing to do with her rough treatment and unhelpful attitude then.

Don't believe the official line that tests are always private. I once had a male NHS GP do a smear test on me with the door to the corridor left wide open, presumably to protect him from the risk of being accused of assaulting a patient as there was no female nurse available to chaperone. I wish I had had the guts to refuse the test or to complain about this, but I didn't because I was young and depressed and therefore vulnerable. Also, don't believe the official line that tests are painless. Thats an outright lie. I've had one test which was painless, but other smear tests which were painful for 24 hours afterwards! I can only conclude that (much like when you have a vaccination or blood test) it's the expertise and care of the individual nurse or doctor which determines whether or not the test is pain free. Notwithstanding all that, nowadays I refuse to have smear tests any more because since I lost my baby I cannot bear the emotional trauma of anyone touching me down below. Just getting the letter in the post from the screening office upsets me emotionally and therefore I have written time and time again to the screening office to ask them to take me off their mailing list, but they just ignore my requests.

I have always wondered about this test and why it is or even how I managed to get into a system for something which I never agreed to in the first place and knowing what I now know (at 40 years old) would probably never have agreed to anyway had I been fully informed at age 22-23.

I sit here at 5.30am having just come across this site, looking for answers, as I can’t understand why I’m still in pain a week after Lletz treatment. I had an abnormal test nearly 3 years ago, I was recalled for a 2nd test which I had a month later (Clear) and then fell into the system of a 3 monthly test (clear) a 2nd 3 month test and when this was clear moved to 6 monthly test which was clear and so moved to an annual test.

At the annual test I felt poorly afterwards and had difficulty standing on my own. This passed and I went home feeling mildly unwell. However the results were mild abnormalities so I was referred for a colposcopy which resulted in the above lletz treatment. Mentally, it feels like they finally found what they were looking for after all the prodding. Like reading a spouses diary....read for long enough and you will come across something you don't like.

I was called by my local (cottage) hospital and given an appointment date with a visiting consultant this phone call arrived the same day as the letter from the screening services people. (no explanation, no choice just a results letter and a telephone call) The letter was in a big envelope with 'private and confidential written on the back and NHS SCREENING SERVICES plastered across the front....how private & confidential is that as its hardly likely that your postal worker cannot read!

I have a history of abuse both historically and recently (this was still ongoing when I had the first abnormal result) thus I had the aforethought to ask if the appointment was with a female consultant. It wasn’t. Much persuading by the caller to get me to go resulted in a return to my doctor to ask for a female consultant. I was referred to the main hospital in the area.

I attended the appointment some 3 weeks after the original appointment and on the advice of a female friend, as I was a bit of a mental wreck with the worry I spoke with my consultant there prior to the Colp exam and detailed my previous history. During the exam she did find some abnormal cells and decided that because of my history she would do the lletz treatment (so I would not have to have a biopsy and potentially return for treatment later) I agreed, I was there anyway, and the treatment went ahead, unfortunately my body had a complete reaction and went into shock and shutdown.(Good job I wasn't in the cottage hospital or I possibly wouldn't be here to type) The result of this is that I spent 3 days in hospital, with no one knowing where I was, my notes went missing and medical staff not knowing exactly why I was there. They provided me with food, painkillers and drinks but failed to provide any other care and couldn’t locate my notes to allow me to go home. By the end of my 2nd day there my mental health was through the floor and I would happily have jumped out of the window had I been able to move. On the 3rd day a different consultant came in with 3 nurses and started asking me questions. When I started to tell him what I’d been through,(ie the number of tests - in 3 years – and my background he calmly told me that “if they didn’t keep an eye on me I would be dead as I had high grade risk disease cells” and that he was going to refer me for some psycho sexual counselling as I would need to be tested more regularly now. (I have just had 18 months of counselling since the 4 years of stalking) Then he left along with the 3 nursing staff.

At that moment the consultant who did the treatment entered and I asked her what he had just said to me as it was completely different to what she had told me previously and I was completely confused. She again repeated what she had said previously and it was nothing like what he had just re-itterated to me.

I now find myself on Anti depressants, pain killers and more counselling, 2 weeks off work so far, without pay as I am self employed, continual moderate to bad pain and an inability to stand for more than 5 mins without a dire need to pee. My immune system has followed my mental health to an all time low and I find myself unable to ward off the cold I now have let alone any HPVirus they now test for. In the space of 2 hours I went from an active sporty, horse riding non smoking/non drinking healthy working woman to a blob in pyjamas.

I’m a fairly intelligent woman but it never occurred to me that I had a choice, it was never given to me as a choice, I received a leaflet that said I would be able to go back to work 24 hours after any treatment and that post op I would have to have a colp exam annually for 10 years. And that if I didn’t attend I would be referred back to my GP.

The system does not take into account any previous relevant history, indeed my consultant only had the results of my latest test and had no idea about the previous 6 and had I not been able to tell her would have done the colp with no further information other than what was on the sheet in front of her. I feel for those women with learning difficulties or Mental issues that make them unable to advocate for themselves.

I still haven’t had the lab tests back but I can tell you now, I will not go through this a second time and after reading up on the system since my treatment that I will be withdrawing from the UK screening system and will go ‘self refer’ at times which I will discuss with my doctor upon full examination of my complete medical history!

Chazzy,

You posted a while ago, but I had to respond.

What a nightmare for you... So many women go through hell with this testing and most of this screening and over-treatment/biopsies are unnecessary and avoidable with evidence based testing. I'm 55 and have never had a pap test and never will...I did my own research, didn't like the numbers and as a low risk woman, rejected this testing. My risk of cc was near zero while the lifetime risk of referral for colposcopy/biopsy is a whopping 77%....the lifetime risk of cervix cancer is 0.65%, it's rare. Most referrals are caused by false positives and most treatment amounts to over-treatment.

I've found knowledge protects us, doctors back off quickly when they're confronted with an informed woman. If you don't want to have pap tests then contact the Screening Aauthority and ask for an opt-off form. Given you didn't opt-in, it's poor that women are expected to opt-out or they're harassed. I also, wouldn't hesitate to speak to a solicitor if I met resistance or if your GP removed you from their records. This is a try-on, legally and ethically informed consent is required for all cancer screening, it's our choice.

Anyway, we now know that only a handful of women can benefit from pap tests, the Dutch will scrap population pap testing and introduce 5 hrHPV primary tests at 30,35,40,50 and 60 (or self-test) and only the roughly 5% who are HPV+ and at risk will be offered a 5 yearly pap test. This will save more lives and spare most women from a lifetime of unnecessary pap testing with the fairly high risk of over-treatment.

You might like to join us at Blogcritics and Unnecssary Pap Smears, almost 10,000 posts from women sharing real information, offering support, concerned at the lack of respect for informed consent and sadly, there are many posts from women left traumatized and harmed by this program.