I'm going to end up losing my job

[jobstuff24]

And I can't afford to

I have a new medical condition that is causing severe pain, as in 9/10, screaming/moaning/can't function pain
I'm on the max pain relief which isn't working
It's unpredictable so I could have pain once every few months or once every week
An operation will help but the waiting list isn't small and I'm waiting for hospital to have an MDT meeting

wtf do I do? I can't even go private as it needs two different types of surgeons
I'm exhausted, I'm sick of being in so much pain

Reapply for PIP. If you're not getting it I don't think you're filling it out correctly. Remember it asks about best days and worse days. On your best days yes you can cook/walk/shower. But not on your bad days.

On your bad days you can't stand straight never mind walk properly, you certainly can't drive on the strength of pain meds you're on. You need to explain it all fully.

The GP has begrudgingly upped my oramorph from 1.5ml to 5ml and said about addiction
I've had it before along with diazepam and never been addicted and I don't take it daily
It's hard because when I'm fine I'm fine but they don't see the flares as I can't move out the house when I have them

I’m sure you’ll have thought of this but just in case- have you discussed taking progesterone only pill with no break to stop your periods whilst you’re waiting? This has been an absolute game changer for me although I still have some pain (my endo is not as bad as yours though so aware it may not help).

Yes, I don't get on well either hormones (panic attacks, anxiety etc)
The pain is also random and doesn't seem to be period linked but they said that's probably the adenomyosis

I did agree to a mirena to be fitted during the op as I haven't had one before (currently copper coil) and it can come out if needed and they will do a hysterectomy

Ah yes makes sense. The mirena is the same hormones, I thought of getting one fitted but decided to try the pills first (as easier to stop those if any issues than have to get an appointment to get the mirena out) and haven’t looked back so far. But appreciate that this might worsen your mental health and might not resolve matters for you if it’s not period related. Sorry you’re in this position the waiting lists are ridiculous at the moment.

That must be agony. I’m so sorry you’re going through this. Just stay open and transparent with work. You can’t help your health.

I'm feeling more positive today now the pain has eased and that it's looking like it won't be 6 months until the op
Yesterday it was just looking like this pain would go on and on with no end date in sight

That's good. I know from experience - you just have to take one day at a time. You'll get there in the end, and I know the wait is just terrible, but believe me, I am a lot older than you, and I can recall the days when the majority of doctors didn't even believe endo was a real thing, and it was just weak women whining about period pains! You wouldn't believe how many doctors came close to death back then!