Trying to cope emotionally after being forced to have a smear test

Cervical screening (smear test)
1

Hi

I am hoping someonce can help me.

Although middle aged I have never had sex/ a sexual relationship/ intimacy/ I do not like being touched. Which I am fine with. It is just how I am.

For these reason I had made an informed decision not to have smear tests as I was very low risk and signed many disclaimers for cervical screening at my GP surgery over the years.

However I saw an new GP for another reason (suspected breast cancer). During the consultation she was very aggressive and insisted I had to have /needed a smear test several times to which I said no.

The GP then said how suspicious my symptoms were for cancer and that it may have spread. She insisted I needed urgent tests and said I needed to have blood test for cancer biomarkers and a smear test straight away and the hospital would contact me for within the next 48 hours as I was an urgent referral (for breast cancer). When I tried to ask questions she dismissed me and just said how supspicious and urgent my situaiton was. I was given no information.

At this I was extremely distressed and frightened and agreed to have a smear test as I believed was seriously ill and it was something I needed (not a routine screening test). 

I went to the nurses room in a state of shock and could not speak. I could hardly keep it together.

The Nurse repeatedely tried to force a speculum inside me. I told her she was hurting me so badly and she said it was because I was not relaxing. She kept ongoing and on about the fourth attempt rammed the speculum into me even harded. I felt as if my insides were splitting and was crying and shaking with the pain. It was ony when she could not also force the brush for the test into me as well that this ordeal stopped. I was totally distraught.

Physically I have healed from the internal bleeing, bruising and general discomfort, but emotionally I am so distressed I cannot express in words the total violation, humiliation, lack of control, betrayal of trust and also how stupid I feel as the smear test was totally uneccessary for breast cancer diagnosis.

Are there any organisations that offer support for this type of experience? I have tried to moved on but am finding it hard to cope. Sadly I do have breast cancer but this experience has severly damaged my trust in the medical profession and confidence in treatment/care. I did call a help line for breast cancer but  when I tried to explain what had happened the helpline nurse just dismiissed it as a 'poor smear test experience' and did not seem to understand why it had affected me. 

I have tried to take back some control and wrote a formal complaint to the GP practice manager.  They advised they 'appreciate patient feedback", were "sorry I was disappointed in my experience wih them' and felt  'I should 'move on'.  Which left me feeling dismissed and worthless.

I can hardly believe I am wrting this on a public forum (thank goodness it it annonymous). But I believe what happened to me at the GPs surgery was very wrong. Reaching out for help via the GP complaints process and help line nurses has crushed my faith in the medical profession.

I am hoping if there is someone else on this fourm who has had a bad experience they could advise ways to cope. I feel as if I have been assaulted and that I am being dismssed and told that what happened to me is fine. I feel very isolated and as this is so personal I cannot discusss it.

Just to add I am not anti smear tests. I just beleive women have the right to an informed choice over what happens to their bodies and that patients have a right to be treated with dignity and respect.

Sorry for the long post, I just feel so traumatised by the experience, terrified by the cancer and have such strong emotions I feel I  am going out of my mind and for obvious reasons do not feel confident going to a GP for help (event though I have changed practices).

Thank you x

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

2

Oh my, I’m so sorry to read of your experience.

A few weeks ago I complained in writing to my GP about my most recent smear test, which I found really traumatic (I posted a thread up on here about it, entitled 'traumatic smear test). Unlike yours, their response was fantastic. They took me seriously, addressed all my concerns point by point, spoke with the nurse involved (who turned out to be a locum rather than permanent practice staff), apologised, and informed me that their final decision is that the nurse will not be invited to work in the surgury again. And it took them just 5 days to do all this. I found this response very reassuring.

I believe there are other ways to pursue a complaint, if you wish to take this further. Info here: https://www.which.co.uk/consumer-rights/advice/how-to-complain-if-youre-unhappy-with-your-gp-or-gp-surgery

I wish you all the best.

3

Thankyou for the link Lou8892,

I was sorry to read of your experience (although it did make me feel a little less alone) and am glad your GP surgery took your complaint seriously and you were reassured. I hope you manage to fully recover from the trauma.

Both the GP and Nurse are permanent practice staff at my ex- GPs so perhaps that is why they were so dismissive of my complaint. I had almost forgotten that there was a student nurse present who gave me a wedge of tissues as I left the consulting room distraught - the only decent act in the entire consultation.  It disappoints me that they are actually training new nurses to behave in this way.

I am still in shock about what happened  - I had been with my GP surgery 16 years and trusted them. Unfortunately the experience plays repeatedly around my head. The worst thing about it was I feel that the GP was being deliberately malicious; that she was taking out her anger that I had not previously had smear tests on me and I deserved in some way to be frightened/ humiliated.

I read the rest of your thread with interest, particularly the feedback from Morgane as I am trying to work out how to gain some trust in the medical profession and how I will be able to move forward with my cancer treatment. I did consider telling my cancer nurse about the poor experience I had received at the GPs in the hope I would be treated with some extra consideration/ kindness (e,g, have all procedures explained to me before anything was done/ given time to decide on treatment decisions) for my cancer but am concerned I could be, not believed,judged as if it was my fault, my concerns would be dismissed,ridiculed as in the 'old virgin' comment Morgane mentioned.

I refuse to be a victim  and am trying to take regain some control of this situation and have submitted a complaint to the Parliamentary and Health Service Ombudsman. Unfortunately this process appears to take several months but it may help me to have some closure and help protect other women from going through the same experience. I am also considering contacting the Care Quality Commission but for some reason feel guilty as if I must not complain about Doctors and feel the need to add the comment that I have never complained about a GP or practice ever in the past.

Just after the GP visit I also self referred to a NHS mental helath support service and I have a telephone appointment tomorrow to discuss being referred to a trauma specialist so hopefully that may help.

I will stop rambling on as I am trying to limit how much the poor smear test expereince is impacting on my life.

Thankyou again for your support.

Best wishes for the future. x

 

 

 

 

 

4

Thankyou for the link Lou8892,

I was sorry to read of your experience (although it did make me feel a little less alone) and am glad your GP surgery took your complaint seriously and you were reassured. I hope you manage to fully recover from the trauma.

Both the GP and Nurse are permanent practice staff at my ex- GPs so perhaps that is why they were so dismissive of my complaint. I had almost forgotten that there was a student nurse present who gave me a wedge of tissues as I left the consulting room distraught - the only decent act in the entire consultation.  It disappoints me that they are actually training new nurses to behave in this way.

I am still in shock about what happened  - I had been with my GP surgery 16 years and trusted them. Unfortunately the experience plays repeatedly around my head. The worst thing about it was I feel that the GP was being deliberately malicious; that she was taking out her anger that I had not previously had smear tests on me and I deserved in some way to be frightened/ humiliated.

I read the rest of your thread with interest, particularly the feedback from Morgane as I am trying to work out how to gain some trust in the medical profession and how I will be able to move forward with my cancer treatment. I did consider telling my cancer nurse about the poor experience I had received at the GPs in the hope I would be treated with some extra consideration/ kindness (e,g, have all procedures explained to me before anything was done/ given time to decide on treatment decisions) for my cancer but am concerned I could be, not believed,judged as if it was my fault, my concerns would be dismissed,ridiculed as in the 'old virgin' comment Morgane mentioned.

I refuse to be a victim  and am trying to take regain some control of this situation and have submitted a complaint to the Parliamentary and Health Service Ombudsman. Unfortunately this process appears to take several months but it may help me to have some closure and help protect other women from going through the same experience. I am also considering contacting the Care Quality Commission but for some reason feel guilty as if I must not complain about Doctors and feel the need to add the comment that I have never complained about a GP or practice ever in the past.

Just after the GP visit I also self referred to a NHS mental helath support service and I have a telephone appointment tomorrow to discuss being referred to a trauma specialist so hopefully that may help.

I will stop rambling on as I am trying to limit how much the poor smear test expereince is impacting on my life.

Thankyou again for your support.

Best wishes for the future. x

 

 

 

 

 

5

Hi oomymind

 

I'm not sure if a recount of my own experience will help or not, so apologies in advance if you feel the following is not relevant or appropiate.

 

My experience is virtually opposite to yours. I stopped going for smear tests age 50y for a range of 'informed' reasons. On a couple of occasions my GPs gently reminded me but both times I was dismissive and neither GP made any effort to persuade me - but Oh how I wish they had - see my back story. Subsequently, my GP surgery has had to put up with me questioning (rightly or wrongly) why they didn't give me more support to have my smears done. Knowing what I know now I would have been forever grateful if someone had frog marched me to a smear test - not a realistic option of course. I would estimate that keeping up to date with smear tests would have given me a 90% chance of preventing my cancer; sadly I am now a medical liability for my GP on account of all the long term side effects of my treatment. I've been left with a bladder that will never function properly and lymphoedema; both conditions will require daily management for the rest of my life. I can see how health professionals might be concerned/frustrated by patients who refuse tests.

 

I'm not excusing how you were treated by your GP surgery and it's particularly unfortunate given your history of sexual abstention. For the record I would note that any sexual contact whatsoever, and regardless of how long ago, can put one at risk for cervical cancer including non-penetrative sexual contact and sharing of sex toys with either men or women or possibly what I think of as 'a hands everywhere encounter'.

 

I wish you well with your endeavours to get some redress and hope you can come to terms with your traumatic experience, in time.

 

x

 

6

Dear Jazza

Although new to this forum I have seen how much effort you put into promoting cervical screening and supporting those who have diffculties with the process.

As I currently have a breast cancer diagnosis and have been given a detailed treatment plan of surgery, chemo, targeted therapy, radiotherapy and 5 years hormone therapy I fully understand the seriousness of cancer treatment and its potentiail side effects and a little of what you have been through. I am liiterally terrifeid.

I do however take great exception to your comments. It is never an excuse for medical professionals to force treatment on a patient against their wishes and without informed consent. They are entitled to their feelings of frustrations but should never take it out on a patient. I did not provide all of the details of what happened to me in the consultation room with the doctor but In any other situation what happened to me would be classed as assault. 

I am also aware that any sexual contact of any kind could result in cervical cancer. I had made an informed decsion. This is not relevent to me which the GP would have know if she had allowed me to speak/ shown any interest in my medical history. Additionally she was so focused on forcing me to have a smear test I did not want /need she failed to provide proper medical information relating to the medical condition I presented with i.e. breast cancer!

A GP/ pateint relationship should be respectful and trustful (hostility and aggression are not acceptable, ever and particularly not when a patient is in shock having being told they have cancer). I understand you regret your decsion not to have a smear test, the consequences it had on your health and you do not want others to have the same problems but would you really be happy to be 'frog marched' into what ever test a GP felt was appropriate each time you visted the surgery and be forced to have it without consent/ free choice?

I know no offence was intended but feel it important to different between 2 different issues.

Cervical screening does save lives, it is important but it (and all other screening test, and all medical treatments for actual illnesses) should never be put above a patients rights to make their own informed decsions on treatment as it is their body.

My response is very strong at the moment as part of the trauma is having control taken away when you are at your most vunerable, it is a betryal of trust. From my perspective the exiistence of a well performed cervical screening program is very important. It is the attitude of forcing cervical screening on women using any means possible with no consideration for physical and mental distress which causes so many problems/ alienates so many women from the entire process.

I wish you well.

 

 

 

 

 

 

 

7

 

Oomymind, you're not rambling! x

 

I'm so glad you have an appointment today to discuss referral to a trauma specialist, oomymind. That is an excellent move, well done.

 

And I know exactly what you mean about the mental guilt of complaining. I originally wrote in the complaint to my GP that I'd been a patient at the surgery for 20 years and never before felt any reason to complain - but then I deleted that statement, telling myself sternly that I have every right to complain about inadequate care, in order to help try and prevent other women having damaging experiences. I also reviewed my complaint before sending and altered my language in places to make it more assertive - for instance, I asked for note to be added to my file about my retroverted cervix and said 'if in future I choose to consent to any internal examinations or procedures' rather than 'in future internal ...'. Incidentally, on the matter of consent, my surgery told me that their guidelines state that smear tests should never be carried out on an upset or distressed woman. Their guidelines require the practitioner to stop immediately and ask the woman to rebook a longer appointment slot on a different day. Their guidelines also forbid comments on a patient's body (and I would assume sexual history, although they did not say that as it wasn't relevant to my specific complaint).

 

I have a sister who has a rare disease that is managed in a similar way to cancer - one of the methods of controlling (but sadly not curing) the disease is chemotherapy. When she newly diagnosed and her treatment plan was being drawn up, she always took someone else (normally her husband) to her medical appointments, so there was someone else to absorb the information, and she also often asked the consultant/dr/nurse/therapist whoever whether she could record the consultation on her phone to go over in her own time afterwards. I'm not aware of this ever being refused. This may have partly been as she was on a high dose of oral morphine during this period, but it might be something to consider? I always accompanied my sister to chemo and have only praise for the specialist nurses on the ward there.

 

One final thought – you might wish to contact Macmillan Cancer Support? I've heard very good things about their support from a sister-in-law who's husband had terminal cancer a few years ago, though it isn't something I've accessed personally.

 


 


 


 


 

8

 

Women should never be coerced into having what are may be extremely well-advised but are also, in fact, optional screening (not diagnostic) tests. And the risks and harms as well as the many benefits of any screening programme should always be made clear – personally I don’t think they are with the UK cervical screening programme in its current form.

 

I think it’s absolutely disgraceful and indefensible that the GP pushed for a smear at such an emotionally-wrought time for oomymind, and that the nurse carried it out. She was consulting on an unrelated and extremely serious issue (suspected breast cancer); to then force a routine screening test on her there and then must surely break guidelines and is absolutely unethical. If the GP had good reason to suspect cervical cancer then what was required was a diagnostic test, not a screening test.

 

9

Hi

 

I am empathetic about how difficult and distressing the smear test can be for some. The last routine smear I had in 2004 was very painful and was a contributory reason for why I stopped attending for tests thereafter.

 

I am now a keen advocate for HPV self testing which should enable an effective and relatively comfortable screening experience; possibly a game changer for those who struggle with the smear test as currently offered by the NHS. I am optimistic that this might be a way forward for the future: https://www.bmj.com/content/364/bmj.l1357.full

 

x

 

10

Hi Lou8892

You make a good point about assertiveness. The subject actually came up at my trauma asssessment today.

Although it is unlikely (hopefully) I would ever have such a poor experience with a GP/nurse again I now have a strategy in that I could simply say in the consultation  'I do not feel safe. I am leaving'. I am also determined to obtain as much information as I can about my future treatment and make informed choices/take control as much as is possible.  It is a 2-3 month waiting list for the trauma support sessions but I really think they will help.

I am sorry to hear about your sisters health problems (you sound a very supportive sister). It is a good suggestion to ask to record the consultations as unfortunately I have to attend hospital appointments on my own due to COVID (although some are via telephone).

Will definitely give Macmillan a ring at some point.

Thank you for your support x