This pain is unbearable

Hi Ladies

This morning I had what can only be described as another flare up... Started off feeling like a period pain but went aggressively worse to the point where I had to lie flat on my back with a cushion over my abdomen. I was home alone so had to drag myself to the kitchen (luckily we don't have stairs) to take some painkillers. I honestly felt like someone was turning the knife in both sides of my abdomen and even up my back. I was in a mega hot sweat begging for this pain to go. I KNOW this is Endo and I'm on slow referral to the hospital but I've booked an emergency appointment today to try and speed the process up. This has happened before but in the night.

Can anyone advise me what to say/ask for? I can't handle this anymore. It caused a panic attack (which I never have) and the pain is still persisting but as a dull ache 😕 Losing the will to be honest xx

7 Replies

  • Stop being brave - go to A&E. I know it seems like you're in overkill - but if your arm or leg felt like that wouldn't you do it? If you must - call NHS 111 first - but absolutely 100% see someone while you're in this state. You'll only remember that its was bad - you won't remember how bad and it will happen again. I spent 25 years being brave and it took 25 years to be diagnosed. Now I'm fighting for surgery and people keep telling me to be brave. I'm sick of it - it's ruining my life - get it sorted. If you were in a room with a man who was collapsing because of pain and having a panic attack what would you do? You'd call an ambulance right?

  • Very true! Thank you for putting it bluntly because as you know people see it as is being weak. I'm glad you finally got your diagnosis and totally understand what I'm saying. I'm sat in the doctors waiting room as we speak so I'm going to push for quicker referral and most likely head to hospital from here but if I can get a note from her to bypass the queue I definitely will. I hope your fight pays off soon xx

  • Well done Emma - I do hope that you are getting the right kind of help. I have to say - I've taken the advice of the EUK team and I'm going straight for excision surgery - no exploratory Lap. If you can get under the care of an Endo Centre and not just a general gyne then I would seriously go for it. You can find out how to find those centres on the Endo UK site.

    I bought a TENS machine this morning - it's REALLY helping - I think I'm in love. It's the first "relief" I've had in about 3 months... phew!

    How did you get on with the Doc? Xx

  • Thank you so much for your support. I'll have to have a look at that because I want this sorting sooner rather than later. Can you refer yourself to an Endo clinic? I think you're definitely doing the right thing there by going for the direct surgery especially seeing as you've waited so long.

    I was given Codeine to help me cope but I was told if it flares up again to bypass the doctors and go straight to A&E so that's what I'm going to do. The doctor was really sympathetic and she said my referral was sent a month ago (and still nothing) so she said by going straight to hospital it should speed the process along.

    What's a TENS machine? That is of interest to me. I'm glad it's helping you 😊 Xx

  • Glad to hear you have a sympathetic GP - I have suffered horribly because I don't... I was told it was all in my head and to get over it - or that I could have some anti depressants! I went to the lady dr at my clinic and though she was sympathetic she was clueless about her authority's policies... so I have rather gone after things myself. I got myself sent to A&E by a locum - she called the Gyne on call and described my symptoms and he agreed to see me - he gave me the name of the Endo specialist and wrote to my GP saying I must be referred to her. he gave me a copy of that letter (always worth asking for a copy - I always do now - and I take a photo of it with my phone) and I went to a that lady GP i mentioned and she wrote a letter. She hadn't heard back two weeks later. I actually ended up taking a copy of her letter and emailing it to the hospital central appointments, the outpatients gyne clinic and the surgeon direct. It's amazing what a bit of googling can turn up. I'm still waiting for surgery - but I'm on the list. I was sooooo very low yesterday - spent two full days in tears.

    No one had mentioned drug-free pain relief to me before - well - so far I've been told to "go for a walk" and to "meditate" - well... I'm experienced in both and neither have helped. This little machine has sticky pads that you stick to yourself where the pain is. It's like a reverse heart monitor - it sends electrical pulses to your nerves - effectively relaxing an numbing them. You can very the intensity and it's like a fog has lifted off me! They're on offer in boots down to £47.99 from £59.99. If you go to Boots website and search for "TENS Digital Pain Relief Unit".

    I find codine effs up my tummy - but it's quite nice in the short-term - but also addictive. I'm all about "drug free" if I can be!

    Keep us posted! and best of luck!

  • So do you think it would be a waste of time to go to a gynae then? That's awful what you've had to go through I really feel for you there. 😕 I actually want them to do something of use that will actually help but we seem to run into a lot of brick walls with Endo being so unfamiliar to so many people in and out of the medical field. I'm glad you're feeling much better now though 2 days of tears is so draining emotionally and physically so I'm glad you've made it past that. I'm just going to go direct to A&E next time and see a gynae there and what they can do for me. I've spent so much time worrying about everyone else that I think I need to focus on me more.

    I only actually take the codeine at night because I'm on migraine medication so it knocks me out 😴 I literally am only taking it at time of pain too so I'm not reliant. I'd love to go through the none medication method but I'm on lifetime medication so it doesn't really phase me taking tablets

    Keep us posted how you get on too and best of luck also to you xx

  • Emma - we are so similar. I am also on life-time medication (thyroxine) and I'm a migraine sufferer. Giving up smoking pretty much cleared my migraine - that was until they put me back on the pill for the endo and then I just had a low-level migraine for 6 weeks - so I stopped "the pill" and I'm now on northisterone. I think my weepiness is due to that... it's anything hormone based - seems to take ages to get used to.

    One interesting side effect of the TENS machine is that is increases endorphin production. I'm actually cheerful and optimistic now... that's not at all like I've been for the past 5 months... apparently they don't work for everyone. But i'm loving this!

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