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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think an NHS 111 operater shouldn't be saying this?

64 replies

EndoTheWorld · 01/12/2016 13:31

Recently I called 111 due to severe endometriosis pain (extreme pain caused during period). The reason I called was because the pain seemed worse than usual - barely able to move, or think, just a world of agony. The usual dizziness, vomiting, shaking and fever was significantly worse and it is this that made me call - I thought something had gone very wrong and I might have an infection or something that was causing me to go into shock.

The woman on the phone was intitially sympathetic - I was groaning and panting my way through the pain as if in labour and was struggling to speak because the effort hurt even more. She said that she had endo too and understood. She then proceeded to lecture me about "lifestyle", telling me I neede to cut out red meat. I explained I was veggie, almost vegan (cheese is my downfall) so she started saying I should be entirely vegan. I also had to give details of my exercise regime. Of course, this kind of supplementary information/advice can be helpful in the right context but I don't think this was the right context!

Worse, because she inititally seemed sympathetic I ended up expressing, in a garbled way, my fear of this impacting my ability to hold down a job (not currently in paid employment). She told me she had never lost a job due to endo, in over 30 years. Well no, I suspect the NHS had decent sickness policies to cover this sort of thing! Bit different if you work in the local supermarket.

I repeated several times that the reason Id called was because the associated fever was so much worse and I thought maybe something else was wrong (I was concerned that I'd just be found dead a few days later, if it hadn't been the middle of the night I'd have called some people and got them to check up on me). It's so confusing because if I didn't have endo I'd have called an ambulance with those extreme symptoms, so it's hard to know if one should when the symptoms are significantly worse/different. She reluctantly offered a phone call from the out of hours GP (who called several hours later), but continued lecturing me about lifestyle - as if I can make this extreme pain disappear (and my lifestyle isn't bad, all her assumptions were wrong but she just got to a really nitpicking stage as if determined to blame my pain on me).

AIBU to think that when someone is in so much pain they feel like they are dying, it is not an appropriate time to lecture them about lifestyle? And even more shocking from someone who calims to suffer from it herself? I'm guessing she's the type who barely noticed they were giving birth and was running marathons the next day...

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EndoTheWorld · 01/12/2016 19:44

And I'm not denying anyone's pain - I'm saying women need to be given pain relief not told it's all in their head, or normal, or to put up with it!

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GreenPetal94 · 01/12/2016 19:57

This is completely not what she is meant to do.

If it happens again I would ask for the operators name. If they don't give it they will at least probably shut up and do their job. If they do give it then it would be easier to make a complaint once you feel a bit better.

EndoTheWorld · 01/12/2016 20:01

Pete I've not made disparaging remarks about men. You seem determined to misinterpret everything I write. You're the one making sweeping comments and ignoring the evidence.

I'm the one suffering severe pain that no-one gives a shit about.

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EndoTheWorld · 01/12/2016 20:03

I thinks she did ask me some standard questions too. I vaguely recall her asking me to feel my chest and feel how hot it was.

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PeteSwotatoes · 01/12/2016 20:04

Yes you're in pain and I've said numerous times that I'm sorry and I feel for you. It's not a free pass for being sexist.

Bunnyfuller · 01/12/2016 20:15

Ask to see another GP, in a similar situation try your OOH GP service. Unless you thought this was something other than the endo, (and yes, the pain can be horrific) it's not an ambulance/A and E job - endo isn't an infection, and unless you're bleeding at a significant rate you're not going into clinical shock. I've not heard of endo being life threatening (happy to be corrected) but it's not a job for ambo.

HOHOHOvariesBeforeBrovaries · 01/12/2016 20:16

Pete if you want to debate barriers to healthcare based on gender, why not post on the feminism board rather than starting an argument with someone who is clearly in a huge amount of pain and very frustrated?

mysistersimone · 01/12/2016 20:17

I really feel for you, not right you should have to suffer. Not right the 111 operator offered her opinions.

RubbishMantra - that's horrific. You ask for help and get ridiculous comments like that.

I rang 111 two years ago when I was suicidal. The operator told me to stop crying and pull myself together. He said it several times. I'll never forget that. It was a friend that helped me through it in the end.

EndoTheWorld · 01/12/2016 20:33

Bunny I did wonder if something else was happening that might require an ambulance, yes. It was the extreme shakiness and feeling I was totally freezing even though I was wrapped up, hot water bottle, heating on full blast etc. And the mental fogginess. But I still called 111 not 999, and if it's that bad again will take taxi to OOH or A&E (can OOH provide adequate pain relief?). I think the GP should do something but they have shown time and time again that they won't - they wouldn't even refer me to a gynaecologist! And unless my period starts at 8am mon-fri I won't get an appointment in time for them to see me in severe pain.

Pete It's not sexist to point out inequality. A man presenting with those symptoms would quite reasonably not be left alone to put up with it. I just think it should be the same for women too.

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LaPharisienne · 01/12/2016 20:35

I don't understand - surgery to treat endometriosis is cheap and there are plenty of gynaecologists who can do it. Why aren't people being referred? And why on earth don't those who suffer pain like this get prescribed heavy duty painkillers to hold in reserve for episodes like this?

Are there any doctors here who can explain?

EndoTheWorld · 01/12/2016 20:40

For those who have mentioned mental health - YY its awful. I am so, so sorry to hear what happened, rubbishmantra.

With mental health and pain there seems to be this sort of denial of the problem approach, where it's assumed the patient is making a fuss, exaggerating, or should somehow be able to sort it out themselves purely by "lifestyle" improvements. Mental health is potentially worse in fact, where the approach seems to involve telling you to go and do all the things you'd be doing if you were well, which will supposedly make you magically well. Cause and effect all muddled up.

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EndoTheWorld · 01/12/2016 20:50

LaPharisienne I can answer possibly one tiny part of that. I have had surgery previously and it made very little difference to the pain. Though the endo was all over my bowel and it did reduce those symptoms.

I was actually fobbed off by the first gynae I saw (who was female - Prawn made a good point about female doctors with perfectly working reproductive symptoms) because she said the onset of symptoms didn't fit with endo. The next gynae listened when I pointed out I'd come off the pill which may have been masking symptoms (I regained a massive chunk of sanity though!) hence fairly sudden onset.

Never have I been so relieved to find out I'm diseased...
Oh and GP will prescribe recommended stuff like tranexamic acid and mefanaemic acid, neither of which are painkillers but for many women do have a knock-on effect on the pain and some swear by them. For me they do nothing. So perhaps there is an issue with what is recommended and GPs don't like to go outside that?

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Bunnyfuller · 01/12/2016 20:54

You have a right to a second opinion, Endo. Ask for a different GP. Your GP Ssounds like he's ignoring NICE guidelines, there are pathways that have to be followed. My endo actually gets worse after my period - I can't plan a GP appointment around it, but eventually you get referred. How did you get your dx? Surely GP should refer to gynae to confirm? Weirdly it also might be worth getting thyroid checked (especially if period is heavy too) my pain improved dramatically once that was sorted, which was a bit of a shocker!

EndoTheWorld · 01/12/2016 21:21

I asked every GP at my surgery, Bunny. Was eventually referred by nurse when I mentioned it at a smear test. Was fobbed of by first gynaecologist, went through PALS to see another (specialist in endo) who did a laparoscopy to diagnose and treat it.

I actually went back to see him about pain relief recently and now have diclofenac, maximum dose, but it was doing nothing to the pain when it was bad (brilliant for when it wasn't so bad though). He also suggested another laparoscopy which is happening in the new year.

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