I dont think some medical professionals understand the a...

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M

I dont think some medical professionals understand the anxiety and trauma that some women undergo when having a cervical smear test. I myself was abused as a teenager and having to lie back and bare all for someone that you hardly know is a terrifying ordeal. Afterwards reverting back to disturbed behaviour and having flasbacks. The whole issue surrounding smear tests push me into a long period of depression and obsessive behavoursad I have just been called to have my routine smear and the anxiety levels that I have at this moment are giving me panick attacks

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  • Guest
    M

    Posted

    I completely understand, my partner and I went for a smear test. I went to hold her hand and having been can see that it is quite naturally a terrifying experience. This is because like sexual assault it is wrong, to have your private parts treated in such a way is disgraceful, they are for making love not having stranger force bits of metal into. The only reason everyone feels they should go is because they're is so much rpessure to go from cancer charities, and disgusting clinicians who think that if they distract you from the awful thing they are doing somehow this makes it permissible.

    Don't fall for it, my partner and I have both got very depressed over it and won't be going again. To all the people out there who go for these smear tests etc and wouldn't like their partners to come in with them, I think you need to have a good hard think about why that is. I suspect it is because deep down you know it is a bad thing to do, as it is being intimate and sharing something that should only be shared with your partner.

    [i:924abac016]This message was automatically imported from the original Patient Experience[/i:924abac016]

  • Guest
    M

    Posted

    Thank you. I'm so relieved to find others in the same boat.

    I have had a call for my second test and my heart is thumping just thinking about it. I've trawled the net to find anything about anyone else with anxiety over these tests, and I could only find anxiety over the results! I cried at the first test 3yrs ago as I felt so humiliated, even though the nurse was nice to me, and I felt suicidal later in the day.

    Why does it just seem so accepted that all women are willing to lie back and have this test done, and no support beyond explaining what's going to happen? Its so hard to find information about my right to refuse. I'm just scared that the doctor will start witholding my contraceptive prescription if I don't go.

    [i:ec38bbc556]This message was automatically imported from the original Patient Experience[/i:ec38bbc556]

  • piiiiink
    1

    Posted

    [color=black:166b1cc1fb]

    I know this post was started a long time ago but I came on this site last week before my first smear test as I was very scared about it and hearing such negative posts really freaked me out. I completely agree that this procedure is completely unnatural and a generally unpleasant experience but in my case due to my current symptoms I needed to have it done. I have only ever been with my boyfriend so the thought of a stranger being down there was quite distressing too and despite being really scared, crying and panicking all the way through due to being in a great deal of pain even before the procedure even began, I really found that it wasn’t as bad as I had expected it was uncomfortable and unpleasant but really not that bad.

    The nurse who did it for me was wonderful and supportive throughout, however this is not the case every time and every woman should know that she has the right to refuse either the test it’s self or the involvement of a member of the medical staff, nurse, doctor or specialist if they are not comfortable with them and their skills. Your medications will not be withheld (I work in the NHS and know that this would not be allowed unless there was serious concern that they were damaging you) and you should never feel silly about being upset.

    I have to return for another smear test with a specialist this week and I can honestly say that although it was an unpleasant experience (mainly due to my condition) and embarrassing I am not nearly as scared about it as I was for my first and would advise any young woman who needs it done to be brave and go for it, even if after the chat with the nurse you decide you cant do it at least you will know what sort of thing to expect and can go back to her for advice when you feel ready. I have been back to see the nurse just for a chat about what happened and what happens now.

    I too am not too worried about the results as I want them to find something so I can be treated and won’t have to fear of the unknown anymore. And I defiantly agree that there ought to be more places to discuss this experience and anxieties.

    As for the man who says that his wife had no support, what do you think you were there for? To look after her and support her emotionally. Unfortunately my partner couldn’t came with me but he still provided me with the support I needed to go through with it. Talking things through before and after really helped me get everything off my chest and helped me relax.

    ~X~

    [/color:166b1cc1fb]

  • Guest
    M

    Posted

    The information leaflet that the NHS sends out with smear test invitations does not even make reference to the fact that many women find cervical smear tests frightening and distressing. It merely says that 'some women find having the test an unpleasant experience'. In my opinion, this is a terrible understatement and does not begin to cover the anxieties some women have. A cervical smear test is not like having a needle put in your arm, where most of us can switch off, even if we hate it. People cannot detach themselves from their sexual organs because they are part of their emotions and identity as human beings. This is why people who have been raped or sexually abused suffer psychological truama. The only information the NHS provides about the test concerns the physical proceedure itself. Because of this, many women do not feel able to talk to a doctor about their emotions and fears and they put off having the test. In my opinion, medical professionals who take smears should treat the body and mind as one and consider the patient as a person and not as a statistic.
  • Guest
    M

    Posted

    I think there is a lot of hysteria about cervical cancer and smear tests.

    I did my own research and decided not to participate in the program.

    I've been bullied and hassled by my GP from time to time, but she knows I have made an informed decision.

    GP's are often paid incentives to recruit women into these programs - this IMO deters them from giving patients information about the risks of screening.

    The facts - pap smears are unreliable and cervical cancer is an uncommon cancer - without screening, only 1.7% of the population would get cervical cancer. The pap smear produces lots of false positives and some false negatives. Some studies show the smear is only 50-60% reliable...

    Pathologists are concerned about litigation if they get it wrong, so in recent years there has been a surge in the number of false positives.

    A false positives means more unpleasant testing - colposcopy and possibly biopsies. Some women are left with permanent damage to the cervix.

    The screening lobby is powerful - lots of money is being made...

    IMO screening has helped a few and harmed thousands of women.

    I know women who live in fear of their own bodies, dreading pap smears...afraid to have them, afraid to refuse...

    Women are not given risk information and the so-called benefits are overstated - you cannot give informed consent when you're being bullied and scared or do not have risk information.

    Some Drs refuse to give a woman the Pill unless she submits - this is totally unacceptable - cancer screening has nothing to do with birth control - report the Dr to the AMA.

    Did you know 1000 women need to be tested for 15 years to save one woman from cervical cancer? (Study by Angela Raffle)

    Puts it into perspective doesn't it...

    Women need to take back control of their bodies and health.

    I have never participated in cervical screening - the risks for me far outweigh any benefit.

    I urge every woman to read Articles written by Prof Michael Baum, a top UK breast cancer surgeon brave enough to speak honestly about the value of this screening.

    The evidence against mammograms is very strong - I won't be having them.

    A new study shows you're more likely to get breast cancer with regular mammograms. Prof Baum set up the UK breast screening program and now believes it should be scrapped - the screening is harming women.

    Also, in the US women have annual exams that include pelvic exams and rectal exams - the evidence - these exams are unnecessary in asymptomatic women and in fact, can be harmful.

    Women need to stand up for themselves, do their reading and make informed decisions about their own health.

    BTW there is a new blood test that will replace the pap smear (for women who choose to have them) - it's almost 100% reliable and it's called the CSA Test (Cervical Specific Antigen)....

    Good luck everyone....

  • Guest
    M

    Posted

    Just wanted to add....did you know the lifetime risk of cervical cancer in an unscreened Australian population is 1.58%?....(roughly the same for the States apparently)

    Did you know that your lifetime risk of colposcopy with regular smears is 77%?.....

    No wonder they keep this information from women - it's scandalous what women are put through supposedly for their health.

    Women can't make a risk v benefit assessment of this Test because they are not provided with risk information or enough risk information or are \"required\" to have the test to get birth control.

    See Laura Koutsky, Cancer Prevention Fall 2004 Issue 4 (for risk of colposcopy figure)

  • Guest
    M

    Posted

    Actually the statistics released by Angela Raffle are powerful....it's actually 1000 women need to have regular testing for 35 YEARS to save ONE woman from cervical cancer. (Juliet mentions 15 years...it's actually 35!) Juliet was probably thinking about the value of mammograms - which is 1000 women need screening for 15 years to save ONE woman.

    Cervical screening just doesn't add up - maybe high risk women might be interested in taking the colposcopy/false positive gamble, but other women might choose to live with the tiny risk of this cancer.

    I think more money should be spent on research and new drugs for women who actually have cancer - rather than pushing an unreliable test for an uncommon cancer and harming and worrying healthy women.

    There is a great Article that appeared in the Guardian, \"Why I'll never have another smear test\"...

    Google this article - great reading!

    Don't WORRY about this test if you don't want to have it...far too much time is spent worrying about this test - get on with your lives - enjoy!

    This cancer is uncommon (always was) and the Test is unreliable. Even if you have this Test, you might still be unlucky enough to get this cancer - one third of the roughly 1% who'll get cancer have had one or more false negative tests - some are disadvantaged by the test - falsely reassured by the test, they delay seeing a Dr for symptoms.

    If you decide to have the Test, look at the Dutch and Finnish programs...they have the lowest false positive rates - they start screening at 30 and stop at 55 or 60 and only test every 5 years - they catch almost as much cancer, but fewer women will have biopsies (55%) for false positives.

    Young women are much more likely to have biopsies for benign conditions and testing too frequently means a greater no. of false positives. The US push annual screening which means 95% will have biopsies. Australia has two yearly testing - almost 78%....

    I have chosen not to participate in this screening - an informed decision.

    There is a new blood test - cervical specific antigen - it's almost 100% reliable and should replace the pap smear. Lots of people are making a fortune from smears so who knows when this reliable and simple blood test will be introduced.

    Most women would be happy to have a RELIABLE and non-invasive test for cervical cancer - if they were serious about getting rid of this uncommon cancer, they'd be sorting out CSA blood tests asap.

    Write to your politicians if you'd like access to this test. (patented in the States in about 2004)

  • Guest
    M

    Posted

    Just to reply to A.B, sorry if I got that wrong, but when you say

    \"To all the people out there who go for these smear tests etc and wouldn't like their partners to come in with them, I think you need to have a good hard think about why that is.\" I think many people wouldn't want their partner in the room when they have a baby but this does not make it wrong, they just want certain things to be private.

    and your suspicion that \"deep down it is a bad thing to do, as it is being intimate and sharing something that should only be shared with your partner.\" I do not thinking this is valid, i accept that this is your opinion but in reality what is right and wrong is just a construct, just because you're showing someone something you would only show your patner this doesn't mean it's wrong as it is for a completely different purpose i.e. ensuring survival, just as it is for drs to inspect a man's rectum, for rectal cancer.

  • Guest
    M

    Posted

    On the one occasion I needed to see a gynaecologist, I saw a female because I wanted the exam to be done as privately as possible. I didn't want to take my husband with me or have a chaperone in the room.

    I'd also be mortified having a male doctor for a gyn exam, but I quite understand some women don't care at all.

    We're all different and whatever is right for you, is right.

    A friend took her husband to a gyn exam and the Dr and husband were chatting and making off-colour jokes...she felt deeply humiliated. Her husband said he went along with the doctor's jokes because he felt so awkward about the whole scene.

    I think women need to be very careful with their choice of Dr for these exams...make sure it's someone you trust and who acts professionally at all times. Dr's making off-colour jokes while you're exposed and vulnerable is not good enough and it can put your husband in a difficult position. Her husband did call the doctor the next day and admonished him for making jokes...he flipped him off...it was clear he had no respect for women and zero sensitivity. Hopefully, doctors like that end up with no patients.

  • Guest
    M

    Posted

    It saddens me how much distress, embarrassment and harm this testing casues to healthy women.

    I think it's important to get to the truth and you won't get that from a Dr. In the UK and Australia our doctors get paid to reach screening targets, so women have been reduced to targets.

    I was surprised to find the actual risk of this cancer is tiny and almost zero for low risk women.

    I wasn't surprised to find out about all the unnecessary interventions caused by false positives. This cancer is rare...so I knew all these abnormal smears was about the test, and not cancer.

    If you want to understand the tiny risk of this cancer, look at this article

    written by a world expert in cervical screening, Dr Angela Raffle.

    It will surprise you...

    If you don't want screening, a high risk woman is only taking a very small risk...it's up to you to weigh up the risk v the benefits and factor in the distress the test might cause you. (victims of sexual assualt etc)

    If you're low risk, it might be smarter to skip it altogether or have it infrequently.

    I had a smear at 40 and won't have any more testing...I'm low risk and I'm not prepared to risk being harmed by unnecessary biopsies or LEEP for a false positive. Even 5 yearly testing carries a high risk - about 45-55% from memory.

    I work in medical research so have access to the truth.

    It really upsets me to see how controlled women are and for a negligible risk...also, the abuse of our rights. Thousands of women end up harmed by this testing and it's all kept quiet. The rights of a handful of women do not negate the rights of all women to the truth, to make an informed decision to screen or not and to protect themselves from harm and excess.

    No healthy symptom-free woman needs the routine annual gyn exam peddled in the States and Canada. Those exams are of low clinical value and carry risks.

    I won't be having mammograms either...high risks and limited benefits.

    Have a look at the only unbiased information available at the moment - at the Nordic Cochrane Institute website - their paper called, \"The risks and benefits of mammograms\"....once you've read that you can make an informed decision.

    Good luck ladies....

    I can't link articles that explain the risks of this cancer and of testing - go to a website called Dr Joel Sherman's patient privacy under Women's Privacy Issues and you'll find a wealth of honest information and statistics. Knowledge destroys fear and empowers you....

    This Dr also wrote a great article recently on the Kevin MD site called, \"Informed consent is totally lacking with cervical screening\"....

  • Guest
    M

    Posted

    It has always puzzled me why the most pressure by miles is reserved for the least common of the cancers we currently screen for....breast, prostate, bowel and cervical.

    Cervical cancer only affects 11,000 women a year in the States, whereas it's 200,000 men for prostate cancer and the same for breast cancer.

    Yet there is little pressure over anything other than cervical screening.

    I was reading that in NZ women get three \"invitations\" and then a district nurse is sent around to \"assist her\".

    Can you imagine them sending around a nurse to assist a man after he's refused prostate screening?

    You'd never see it, yet attitudes seem to be different with women's cancer screening. It seems women get half the story and coercion and scare tactics to force them to screen.

    Also, in the UK, NZ and Australia doctors receive a target payment when they screen around 80% of their patients, yet no payments are made for the common cancers????

    I think this screening was always a long shot and governments fear taxpayer funds may not achieve very much - political egg on face.

    They knew they'd have to get 80% of women to screen to stand some chance of bringing down the already small death rate, so informed consent went out the door.

    I don't think this was ever an appropriate mass screening test - it harms too many women to help a few....and is any doctor asking women whether they are happy with those odds?

    If a high risk woman or risk averse woman wants smears, then fine, but it was never a suitable mass screening test.

    If you look at the criteria for a successful screening test, it must be:

    a) for a common cancer. cc is uncommon.

    b) It must be a reliable test. The smear is an unreliable test

    c) It must be a test acceptable to most people.

    Most women hate smears.

    Just my opinion....also, my father has refused prostate cancer screening and he hasn't been insulted, challenged or scolded...and there have been no visits from the district nurse!

  • Guest
    M

    Posted

    I have done extensive research on this issue and have too dismissed this test and refused to have anything to do with it a long time ago. Although, I have taken efforts to reduce my chances of getting this disease through other means, I am not going to change my mind.

    I have nothing against the test in particular, what does rile me however is the recall system. I do not and will never agree with the process of bombarding people with letters to force compliance. It is stated that in the UK, the programme saves 4,000 lives a year, how on earth can they say that when they have no idea which of the detected \"abnormalities\" or cell changes will turn into cancer and which will not???? This must therefore be a complete and utter lie! I wonder if the 4,000 simply corresponds to the number of women undergoing treatment for dysplasia!!

    I really think that if they were genuinely concerned about \"saving lives\" and limiting the incidence of dyplasia (since it seems apparent now that the test only discovers the prevalence of cell changes as oppopsed to cervical cancer), they would concentrate more on STD screening, in particular the cause of most cervical cancers, HPV.

    But they don't apparently seem to be interested in doing this are they??? For instance, if HPV is allegedly responsible for 70% of cervical cancers, and this is contracted via sexual intercourse, there is little point in treating a high risk woman with dysplasia as a result of HPV, if she is going to be returning to a potentially infected partner, who may be carrying HPV!!!! As this is contracted through intercourse, why not try to focus more efforts on eliminating HPV. I understand this may be the case with the HPV vaccine but this does not go nearly far enough. There must be more focus on other carriers, dare I say it, men. It has baffled me why women, particularly so in the States, are forced to undergo screening for any type of sexually-related infection or disease going when men walk free. I feel it is pointless to treat women if they are going to return to potentially untreated and infected male partners anyway!! :@

    I'm glad to see that things in the UK at least are changing. The GMC have recently re-iterated the principle that GPs and other medical professionals must accept a refusal when given so, and the district nurse visits of the past have been eliminated. There is also more focus on men now as well. Local and national screening programmes are in place to test for STD's such as chlamydia for both young women and young men, aged 16 - 24. There is one such scheme being conducted by my local Authority and it is high time men were made to take responsibility for their actions.

    My advice to women who don't want this test is as follows, I have communicated a written refusal to my local screening \"Authority\". Others who have done the same have told their GP verbally. If you have made up your mind that you are not going to attend, you must tell them so. Ignoring three written letters would usually be a clear sign to me that someone isn't interested but unfortunately, you need to communicate it. Men get much less hassle for these things, and therein lies some of the key, I think. Men are more likely to give firm decisive no answers and women must do the same. I did, and I have not been hassled or received a single letter since.

  • Posted

    I very rarely post my thoughts on topics I've googled but I really want to add my 2 cents here. I haven't thoroughly read all the replies but it isn't relevant.

    I completely understand your fears and concerns, and whilst I read posts from people who refuse to participate for their own reasons, let me tell you about my experience. I had my first cervical smear after having 2 children and my absolute terror of having one and had put it off for many years. Confident in the fast that I would trust my body to tell me if something was wrong, and I had no symptoms.

    Anyhow, the Jade Goody cancer coverage prompted me to get over myself and go for it. My results came back abnormal and I was urgently sent for a colposcopy, which showed I had CIN3 - the last last level before it is considered cancer. I had the Lletz procedure immediately and now how to go for yearly smear tests as I'm considered very high risk.

    Do whatever you like ladies, it is entirely your decision - but know that I was a walking time bomb. I'm 100% sure the test saved me, the pre-cancerous cells were removed and I've been in the clear for 2 years since.

  • Posted

    And before anyone adds that CIN3 is not guaranteed to develop into cancerous cells - neither does that mean it won't. If you knew you were developing abnormalities, would you rather wait and hope for the best or take action and do something about it? I'd rather be safe than in 5 years be telling my children I have cancer.
  • mac2012
    1

    Posted

    I have read all these posts with interest as I have now had 5 unsuccessful smear tests and I am close to despair over anyone ever being able to complete the test. As family members of mine have died of cancer, I know how important it is to have the test done. However, none of the tests (2 by a nurse, 2 by a doctor and 1 by a specialist just last week) could be completed as the pain was incredible and I was so tense and sore they had to stop. All the people I saw were (mercifully) sympathetic, the exception being the specialist who made me feel like a freak for tensing up and not relaxing, as after the last 4 attempts I knew it would hurt. I was in floods of tears leaving the hospital and just feel totally abnormal after this. I have tried medication and muscle relaxants but nothing helps. I even asked to have the test done under local anesthetic (so I am aware but numb) and would pay for it myself if not on the NHS, but was told this was not possible. So I am at an impasse. I know it is important to have it done but it is too painful and unfortunately now I know it will hurt and be incomplete, there seems little point trying again. I have no problems with any other aspect of my life, just with smears. It upsets me when other people say it is simple and painless, as whilst it may be a breeze for some women, for me it has been painful and terrifying. I would welcome any constructive suggestions, but just being told to try deep breaths and finding another doctor are of no help at all.

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