wish they'd leave me alone

Tests and investigations
1

I've had a few smear tests and they were painful and humiliating.

As I've never been sexually active they were also pointless which I didn't know at the time. Now I refuse to go.

I didn't want to have to discuss my reasons with my GP as it's none of his business but I have had to write to them to tell them why I do not want a smear test because when I just ignored the letters I was removed from my GP's list without being told.

They still keep sending me letters although I have given them my reasons and I feel frankly bullied.

I wish they would treat people as individuals not specimens in a jar and respect our wishes when they are reasonable.

2

hi, i can understand how smear tests can be painful and humiliating, but even though your not sexually active, it really is wise to over come your fear and have it done, i didnt go for 6 years and when i did i had pre cancerous cin 3 cells, if i never would have gone, a few years down the line i would highly likely have full blown cancer now and leave my family to suffer the consequences without me, please go , it can save your life.

regards

sal

3

I know exactly how you feel. The same thing happened to me. My GP sent me invitations for 5 years and I never replied. I cannot describe the distress and unhappiness it caused me. Like you, I was a virgin and I did not want to discuss my circumstances/reasons with a doctor and I felt bullied. Ironically, this test that was supposed to be for the good of my health actually ended up damaging my mental health! I advise you not to have smear tests if it causes you to feel so bad. You could write to the screening programme and ask to be ceased, so that they can't send you invitations. Don't let anyone make you feel you have to do something you don't want to. I think your doctor and the NHS is in the wrong, not you.

4

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.

5

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.

6

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.

7

\"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.

8

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.

9

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.

10

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.

11

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

12

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.

13

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.

14

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!

15

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.

16

I am so relieved to find I'm not the only one. I was sent an invitation just over 4 years ago, and I left it a few months and then Jade Goody died of cervical cancer, so I booked my test and went to the GP, left my husband waiting in the car. I thought "oh yeah, it'll be a quick painless test!"

The nurse put a disposable sheet over me so I didn't feel completely embarrassed. It's weird, but it worked. But my goodness I found it painful when she was putting the speculum in, but fine once done, but then the scraping sensation was too much and I ended up in tears. I asked her to just complete it so it was done, but then she removed it because I was too upset, so she didn't get a sample. I then got dressed and sat in a chair and she basically almost made out there was something wrong with me! It's as though if you're sexually active it should be like the same thing?! But then when I said I was fairly newly married and we had only ever been with each other, she told me I was pretty low risk anyway. Well, I actually felt traumatised for several days I realise now, and just stayed at home shivering on the sofa in a tracksuit with a horrible internal pain and my husband was kind of worried about me. Is this right in this day and age? I had no idea it would be like that, and I felt totally uninformed about it. I really do feel the scaremongering is about meeting NHS targets, and you do feel bullied and backed into a corner with the letters that come if you ignore one. I thought it was an invitation?

But to top it off... I realised out the nurse actually lived in my street and I had been stroking her cats! (Sounds wrong, sorry!) Thank goodness we were moving out of the area a few weeks after that. Since then I have been weighing up my thoughts on the testing and reading opinions and the real facts, feel much more empowered to make a choice, and I am actually more concerned these days about eating well, getting regular exercise and going to my 6 monthly dentist appointments having lost my father to a mouth cancer.

17

Jazzy, So sorry you had a bad experience, but so pleased it's prompted you to do some reading.

You'd be surprised how many women have now made informed decisions not to screen, to screen less often or to seek out HPV primary testing or HPV self-testing with the Delphi Screener.

If you and your husband were not sexually active before you met each other...well, your risk is VERY low and remember, this is a rare cancer anyway, so your risk would be near zero. The risks with pap testing are rarely mentioned, but here in Australia where women are urged to seriously over-screen we have as a result, huge levels of potentially harmful over-treatment/excess biopsies. The lifetime risk of referral for colposcopy and biopsy is a whopping 77%...now this is for a cancer with a 0.65% lifetime risk. It's bad medical advice and nothing has been done to update our program for decades.

Only now are they saying it might be "safe" to move to 3 yearly pap testing from 25 to 70. In my opinion, the enormous profits being made has resulted in our program remaining unchanged for decades, women sacrificed for huge profits. Heads should roll...

In fact, the evidence may surprise you, most women cannot benefit from pap testing, 95% of women aged 30 and older are HPV- and cannot benefit from pap testing. We shouldn't be testing (pap or HPV tests) those under 30, there is no evidence of benefit, the same very rare cases still occur, but testing leads to false positives and over-treatment. Young women produce the most false positives.

There are far better ways of dealing with this rare cancer, the Dutch are the ones to watch, there new program will offer women 5 hrHPV primary tests at ages 30,35,40,50 and 60 (or women can self-test, this device is already in use and can often be ordered online from Delphi Bioscience, i know some Australian women have ordered the device from this company branch office in Singapore) and then ONLY the roughly 5% who are HPV+ and at risk will be offered a 5 yearly pap test. (until they test HPV-)

This takes most women out of pap testing and harms way and will save more lives, concentrating on those at risk.

forwomenseyesonly.com is a great site, lots of women sharing experiences and offering advice and sharing real information. Sadly, the BlogCritics site was upgraded and all of the comments were removed from the thread, we're told they'll reappear shortly, but it's been a month or so now and we're still waiting.

Anyway, you just made the best healthcare decision of your life, to take charge and act on real information and Yes, we can say no to screening. I'm 55 and have never had a pap test, an informed decision made over 30 years ago. It was the best healthcare decision of my life. It's disgraceful that the major focus in women's healthcare is a rare cancer, so many things are ignored, far more likely risks to our health.

18

So glad to have found this thread. I have only been receiving the letters for a few months and I already feel harassed and upset about the whole ordeal. Having done my research, it would appear that the risk of someone in my circumstances developing the disease is extremely low, but these low-risk factors seem to be severely underrepresented in the NHS literature. I would have been happy to discuss the pros and cons of taking the test with a doctor, but this was not offered prior to being phoned up on a weekly basis and sent pushy letters!

I later received a document from my GP, stating that if I had no plans to arrange a smear I could put an end to the 'reminders' by signing a declaration to confirm that I was taking stupid risks with my health and would not hold the surgery responsible. Since I felt that my decision was informed and not at all stupid, I didn't sign the declaration and the letters continued.

I don't want to undermine the procedure as if obviously saves some people's lives, but the way the scheme is handled is surely out of order? It also begs the question why there is not a similarly aggressive initiative for prostate cancer.

19

Blue Moon, it's an outrageous way to treat women and hardly an "offer" of elective cancer screening together with real and balanced information permitting you to make an informed decision to screen or not.

Informed consent is a legal right and the doctor has an ethical responsibility to obtain that consent.

The UK has a call and recall system and i understand your GPs also, receive target payments for pap tests. (ours do too) Some practices, nurses, doctors, receptionists have taken it upon themselves to pursue women aggressively and disrespectfully, this is unprofessional and unethical conduct. Some practices remove you from patient records, ie. sack you, if you continue to decline or flag your file for opportunistic pressure when you next appear at the practice. This sort of conduct should be challenged...report them to the Screening Authority and/or send a letter of complaint to the practice outlining how you've been treated.

Some practices may "say" you need to see a doctor or two for counseling before you can opt-out. This is an unethical tactic, a try-on, to pressure you into screening.

I contacted the NHS Cervical Screening Authority about the treatment some women receive and they assured me all screening is elective and they respected our right to decline. They said some over-zealous doctors or practice nurses would be responsible for these phone calls, home visits etc. You don't have to provide a reason for choosing not to screen, unless you choose to provide one. (I chose to discuss my reasons with my GP, but if you go that way, make sure you do your reading, some doctors see it as an opportunity to challenge you)

If my GP was rude, dismissive or refused to accept my decision, I'd change my doctor and let her know why I was changing my doctor. I think it's important to challenge this sort of conduct, they do it because they get away with it, it works and gets most women screened. I'd sign the letter and include a paragraph saying you do not agree with the wording of the opt-out letter and the practice should review their attitudes and conduct. All screening has risks and hopefully, some benefit, and legally and ethically requires informed consent. It is inappropriate and disrespectful to female patients to harass them about screening or to present screening in a one-sided "must have" way. The use of scare tactics is also, inappropriate.

Few benefit from pap testing as the cancer is rare, always was, while a much larger number of women endure excess biopsies and over-treatment after false positive pap tests. It is for us to decide, not practice nurses or anyone else. For me it was easy, near zero risk of cervical cancer v a 77% lifetime risk of colposcopy and potentially damaging biopsy or over-treatment. (Now I know I'd be HPV- and not at risk) I've never screened and I'm now 55 and unlike most women my age, have an intact cervix. It's shocking to see the damage caused to huge numbers in an reckless attempt to help a few. ALL women matter...and anyway,there was never a need to harm so many with evidence based screening and informed consent.

Blue Moon, it's the practice that is in the wrong here, not you, you have every right to decline screening for any reason. The UK cervical screening program says it respects informed consent, they could even be asked to speak to the practice about their conduct. Weekly phone calls is harassment, which makes me think it's a practice nurse drunk on power. There is a disturbing thread on another website where practice nurses talk about chasing women to get them screened and boasting they "get" everyone. I challenged them and called them out on their attitudes, it's grossly improper conduct that needs to be addressed, I can only assume these people have not been trained or supervised properly or reflect dysfunctional thinking at the practice.

By the way, Dr Margaret McCartney, the Scottish GP and writer, has also declined pap testing and will also, decline mammograms when she turns 50. We're not alone...there are lots of women and men who decline cancer screening. You're right, men are treated differently, I think the profession is still very paternalistic.

These programs treat women badly and that needs to change, I think it starts with us, refusing to accept this treatment. Australia may introduce a call and recall system, it gives them more control over women and helps them achieve targets. I will seek legal advice if they refuse to remove me permanently from the registerI know in the UK women opt-out and then the letters start again 4 years later... you "can't" opt-out permanently...well, we'll see about that, it's another try-on. These people back away quickly when they're challenged, they know this is unethical and possibly, illegal.

By the way, most women cannot benefit from pap tests, you may be interested to know the new Dutch program will offer 5 HPV primary tests at 30,35,40,50 and 60 or self-test with the Delphi Screener, and ONLY the roughly 5% who are HPV+ and at risk will be offered a 5 yearly pap test. More women will reject population pap testing when they discover there is a far better way to screen for this rare cancer. More women who wish to screen will seek out HPV primary testing or self-testing. I know more Australian women are ordering the Delphi Screener online. MOST women cannot benefit from pap testing, it just risks our health, why on earth would we endure a lifetime of unnecessary pap testing and accept the high risk of over-treatment?

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Sorry, about the formatting, not sure why that happened...