To have found my first mammogram really upsetting?

[YompingJo]

Got a letter through with very basic details if an appointment. Turned up and found the whole thing demeaning. Tiny room, intimidating machine taking up most of it. The radiologist was monosyllabic and bossy and manhandled me into the right position including grabbing each breast and shoving it into position, pushing other bits of my body out of the way, not once asking first. I know it's a necessary procedure, but a bit of sensitivity would have gone a long way, and having the respect to ask for consent before grabbing a breast is a basic consideration. I'm autistic and needed to know much more what to expect beforehand. The letter gave a way to request assistance in the case of SEN, but I don't consider myself to have SEN and didn't know what I'd need until I was right there, so that wasn't any help. There was a QR code for feedback, which I gave but I just feel... invaded and demeaned. AIBU?

You should have been asked.
And in my opinion she was not unreasonable at all.

This is an example , in my opinion, of how women are poorly treated at medical appointments.

It’s not acceptable, and men wouldn’t put up with it

There's a lot of publicity about how Royal mail are delivering medical letters too late.

For my ultrasound I wore the gown back to front and had it tied like a wrap dress at the front. I asked the sonographer if I'd got it right and he said it was fine but technically it ties at the back!

I must have looked a right state! All these medical tests may be normal for the species but they're not normal for the individual!

My teen daughter had severe anxiety (confirmed adhd but suspected autism too) and every single medical appt she goes to I say on the outset she has extreme anxiety but copes better if people can please explain to her what they are going to do to her before they do it. I do this every single time.

You are not wrong - things should be explained to everyone before they happen - but autism is SEN and you access extra support so please consider this next visit.

This is rather a ridiculous stance to take.
Anything could happen, in theory, at medical appointments, by being there you don’t agree to any eventuality, you are being wholly disingenuous

You’ve been given an unnecessarily hard time by some on this thread. Sorry for your experience 💐 Empathic staff are really important in these situations. By submitting a complaint you are helping to improve the experience for others (assuming the mammography team act on what you’ve said), so do feel good about doing your bit.

I had a very bad experience having a mammogram with far reaching repercussions. When it was time for the next one, I contacted the hospital and asked if there was an alternative and explained that. I was berated for not having brought the issue to their attention, but I actually wasn’t in a position to do that. The Head of Service contacted me and arranged for the most experienced staff to deal with me, and my last one was OK. I’m undecided how to approach my next one but I do have a couple of years to wait.

I think the problem here sounds like it was the way you were treated. I recently had blood tests at hospital. I have a chronic disease and have had many, many blood tests and hospital examinations through the years. This was the only time I have felt like a piece of meat being processed. The woman did not look at me, grabbed my arm roughly, stuck the needle in competently but there was almost hate in the way she did it. She threw the little containers of blood into the tray. I’ve had my disease for forty years and I’ve never felt degraded by an examination, even the most embarrassing ones! But a simple blood test left me feeling like crying. So I think I see where you’re coming from. And I didn’t complain because I couldn’t put my finger on the problem iyswim.

My experience has been varied, and a lot is to do with the individual member of staff.
Until my last mammogram I had always been directed to a changing room and been given a gown. This time I was taken straight to the room with the machine and just undressed and draped my clothes over a chair.
I preferred the former, but the latter was quicker as there was no waiting time, and certainly not awful.
She definitely told me that she might need to help with positioning before she touched me. I feel the same way about mammograms as I did about smear tests; they are not pleasant but are necessary and only normally done every few years. I try to forget about them ASAP.

I have ASD too and did a lot of research before having my first mammogram.

I still found it very dehumanising. I’m a wheelchair user and getting into position was difficult for both myself and the radiographers.
They were professional but a little abrupt.

for me, the pain was tolerable (but I do have regular v painful checks for another condition) but the visual of my breast (38JJ) being squeezed so flat and being handled like a piece of meat was more upsetting that I had anticipated: I’m very used to breast exams, urodynamic testing, gynea etc but seeing a part of my body compressed in that way shook me up a little.

I know that’s daft; I have a PhD FGS, I’d done my research and I’ve had more medical hands on parts of my body than I’ve had hot dinners but I really struggled mentally after the mammogram. I wonder if it’s because it was in my direct line of sight and made a part of me that I’m not very confident about anyway look so terribly repulsive. I do have body image issues and am a CSA survivor so have a complicated relationship with my body.

I am grateful for the provision and the NHS. I’m a frequent visitor due to complex medical issues, but yes, I agree that the first mammogram can be quite overwhelming and upsetting. It’s a very visual experience as the breasts are literally right in front of you: most other procedures you can look away or zone out but this one is quite different.

I feel so sorry for the radiography staff. I had 2 ladies the first time, now due to being short staffed only one attended me, having to man handle me into position and then take the images, It's not pleasant, but I'm grateful for the service. and you could of easily of seen a video on youtube about what to expect on a mammogram. Not sure what the letter would of explained. Perhaps there were a few ladies to get through that day (There was at least 7-8 waiting on my visit) It's a shame this was yr experience, but you may need to speak up next time.

The YouTube videos are coy about how much your breast tissue is flattened between the plates though.

@aerkfjherf or we could raise the bar higher and treat people with respect in their appointments.

I had my first recently. I was even asked at reception if it was my first. The person at reception ended up being the person who did the exam. No one else came into reception between her registering me and us going into the exam room.
If she was treating me differently because it was my first, I hate to think how she normally does them.
I'll call her she because she never gave her name. I found that very unusual.
She didn't ask for consent. I had signed nothing.
She basically said that she would need to take several pictures and that was it.
I was not prepared for the physical manoeuvres required - bend here, twist there, look round there, hold on there. She grabbed my (40j) boobs and pushed and pulled. Several times she put her hand flat on my stomach (which is large, but still), and pushed really hard. I assume it was too close to the machine. But there was no warning given.
And yes, the squishing really hurt.
I did look at all the info my appointment details directed me to, but they described nothing like any of this.
At no point did she ask if I was ok.
There was no interaction at all.

No, this is not normal, IME. I've had loads of mammos done over the years, both NHS & private ones, & I've never been treated like this.

I've always been treated with kindness & respect. They always understand it can be embarrassing or upsetting. The only difference I've found is in the machines themselves: lately, going private, I've had newer machines which are made with more plastic & less metal & have more rounded edges, so they're more comfortable.

In case it helps, as you get older & your tits give up the ghost, mammos become far easier & less painful!

OP, I'm sorry you had this experience. Please know it shouldn't be like that, & please don't let it put you off doing another one at some time. My breast cancer was caught early, during a regular mammo, & I'm forever grateful for that.

YANBU at all, OP, and I'm really surprised by some of the shitty responses you've received on here. The radiographer absolutely should have explained what they were about to do and asked if that was ok. Just showing up for a hospital appointment does not mean you have consented to anything. I'm glad you gave feedback.

And this may or may not make you feel better - I have asked for over a year for advance information about the treatment and what each appointment will involve for my son and not once have I ever received it. People seem to think you should be grateful for the crumbs of crappy service you receive.

I made a joke similar to this once to the mammogram technician. She told me that men have mammograms too and she hates having to do them. They are very much more painful for most men because of the lack of breast tissue and are only performed where its fairly sure that they have breast cancer. I thanked her for the information.

This. I am aged out of mammos now but twice I got recalls. I am one of the lucky ones whose recalls showed clear.

They really need to find a different way to ask re autism. Like a PP I am autistic but would not respond to the SEN question - one I sailed right through to my PhD with zero educational support; and two - it's not an educational setting. I was not diagnosed as a child and therefore would not know to describe myself as SEN. It's not how I see myself at all and a v bad use of words, not to say faintly insulting. I struggle with all sorts of things and education is not one of them, perhaps the only not one of them, and it feels upsetting to have to identify myself as educationally handicapped just to be treated with a bit of consideration.

But sen is a catch all phrase that covers many elements, including behavioural, social, and emotional needs, it isn’t simply academia.

Maybe it should be changed? It could be SESN, with social needs added. If education is the one thing you haven't struggled with, it's really not nice to find out that you are automatically considered to have SEN.

This is not a SEN , nor an autism issue.

EVERYBODY should expect to be treated with common courtesy and dignity during any medical procedure. If you do not expect this, that’s a you problem that your standards are so low. Those berating the OP are wrong, plain and simple. If I ever witnessed any of my students treating a patient like the OP has described here I would be very unhappy and disappointed, and we would be having a very frank conversation.

I was asked recently if I had any additional needs - that would have covered it.

Definitely make a complaint. I've had a couple and have always been treated kindly and told what they are going to do before they do it. Its not your autism, perhaps that has made it more difficult for you but they shouldn't be treating anyone that way.

THIS

Like other posters, I have had many mammograms and never once has anyone asked for my consent before touching me and manipulating my breasts into the correct position. Agreeing to the appointment and turning up is you giving consent.

However, at the same time, having recently gone through breast cancer (and a double mastectomy), including many kinds of additional imaging be it ultrasound, MRI, CT scan etc, and other treatments such as chemotherapy and radiotherapy, at every juncture, and ahead of some appointment, I googled anything I was unsure of so as to be best prepared and know exactly what to expect.

Having had thirty plus years of dealing with breast issues, I have only ever had one deeply unpleasant experience with a consultant, and I raised this issue immediately with the matron on duty, and then with PALS who took my complaint seriously. Am sorry you felt you were treated without dignity and found the experience upsetting, so you must feedback to PALS. Even so, I feel you are being unreasonable. You have a voice and if you were uncomfortable with the treatment you were receiving, you should have said something, even just to tell her to stop and ask to see someone else.

SEN literally stands for Special Educational Needs. Using it as a catch all and expecting others to know that you do so is unhelpful. How am I supposed to know that NTs just wave away any ND as an educational problem? Apart from it being a bit insulting, it's poor communication. Imagine we all started calling you lot "Typos', didn't communicate we meant Neuro typical, got annoyed with you when you didn't properly self identify as a Typo, and acted baffled when you tried to explain that "typo" also means "mistake" so you didn't appreciate it as a label.

And they say autistic people lack empathy/ have poor communication skills