Losing all hope: So the good news is I've... - Endometriosis UK

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Losing all hope

staceymacg profile image
7 Replies

So the good news is I've been referred by my GP to a gynae who specialises in endo at the QEUH.

Today I was crippled in pain, I was on the floor crying, unable to move, all before work. And then 20 minutes later, I look normal again.... That's the worst part. People thinking you're fine because you don't look ill!!

So I went back to my GP after work to see what else can be done pain relief wise and he added an extra 10mg on o my morning dose of slow release morphine but apparently there's nothing more instant relief than fast relief tablets? I would have thought oramorph would be instant?

My GP has been good but now I'm feeling even him is doubting me.

So back to the referral, I called the hospital to see if they had any idea how long I'll be waiting, mainly just so I can roughly plan time off work.

9-12 weeks.

That's 3 bloody months!!

I broke down crying in a heap on the floor.

I am SICK of waiting and being told to wait and suffer.

I am honestly horrified at how I've been treated on the NHS these last 7 years.

I've just called the private hospital where the consultant works (as well as the NHS) and I could see him next Monday if I went privately through BMI Healthcare.

I'm feeling forced into going private, although technically I can't really afford it I feel like I have no other option.

I feel so let down and so unimportant.

3 months is not okay to see a doctor!! And god knows how long after that before my next laparoscopy!!

What else can I do? I feel so lost and I'm just about giving up now.

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staceymacg
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7 Replies

Oh I'm really sorry that you're suffering so much. Prescription pain killers did nothing for me and it was just luck that the fertility consultant I am under suggested a lap ( even tho he and other medics were convinced my pain was bowel in origin) and I guess as he's pretty experienced consultant( is the leading consultant of the Infertility department) must've seen and dealt with endo many times especially as he deals with infertility ( the two go hand in hand).

I would be very tempted to contact PALS and explain the level of pain you're in and ask if they can see you sooner. They are worth a call. They need to understand how bad it is impacting your life. If I was in your situation that's what I'd do. Pain like that isn't normal and shouldn't be ignored -pain is an indication of something not being ok.

Other than that call 111 ( if pain occurs outside gps hours) might make them realize how much you are suffering.

It is awful as physically it cant be seen- it can feel like people are disbelieving your pain- I'm sure they are not- after all who would make that up?!!! Don't let paranoia get you xoxo Endo is a vile illness and is re known for being particularly difficult to diagnosis ( sadly it masks many other conditions). xoxo

staceymacg profile image
staceymacg in reply to

What is PALS? What will they do or what would I say?

I've seen out of hours gp's many times as well as trips to a&e and still it seems I'm at the bottom of the list all the time.

I'm just losing all hope now😞 xx

in reply tostaceymacg

Patient and liaison service that work in NHS hospitals. They are the service patients can take issues with if they are not happy with treatment etc- they will try to find a solution. They hold much whack and might be able to offer you a quicker under your circumstances. Worth a try. xoxo

staceymacg profile image
staceymacg in reply to

I can't seem to find a number for them, I'm in Scotland, Glasgow! Xx

in reply tostaceymacg

My PALS in my local hospital you can email. xoxo

WeeJacs profile image
WeeJacs

Hi Stacey

I am in Scotland too, can I ask what consultant it was? I am being seen in Paisley. After being referred I only waiting about 6 weeks to be seen x

staceymacg profile image
staceymacg in reply toWeeJacs

I'll pm you! Xx

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