advice please... I don't think I can carr... - Endometriosis UK

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advice please... I don't think I can carry on like this. in pain and desperate!!!!

D-LD profile image
D-LD
11 Replies

I'm having a really bad endo flare up and have been in bed for the past week.

I was taking tramadol but it was making no difference whatsoever so I went to my GP and they've put me on zomorph - a slow release tablet form of morphine - and oramorph (liquid morphine) to take when there's breakthrough pain.

I'm taking both and they are making me feel horrific and just masking the pain. I spoke to the hospital today and I have managed to get an appt with my consultant in 2 weeks times. They said if I want to be seen sooner than get my GP to refer me as an emergency.

Rang my GP and she said to just up my dose because by the time the referral was sorted it would be the appt I've got. I asked about referring as an emergency and she said that's only if I was to be admitted or surgery or if I was in A&E and pain isn't an emergency

I don't what to do. I'm in pain, haven't slept properly for over a week, meds making me feel terrible. I don't think I can carry on like this much longer.

Should I go to walk in centre? See doctor tomorrow and tell her I can take anymore? Ring 111 and see what they think? Go to a&e

I need help and no one is helping me

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D-LD profile image
D-LD
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11 Replies

What treatment have you had in the past? Are you being treated at a BSGE centre?

Can you describe your pain and where its located? X

D-LD profile image
D-LD in reply to

Yeah, I'm on prostap at the moment. I have it every 4 weeks.

My treatment is at a BSGE centre.

The pain is at the bottom of my tummy, spreading around and through to my back and down my legs.

The pain is like a throbbing ache that doesn't go away and I am also getting some shooting and stabbing pains

If I was a dog then I would have been put out of my misery by now. Its just making me so sad and I can't stop crying

in reply toD-LD

It might be best to go to see the doctor and ask if there is any way of being seen any sooner. It's extremely concerning that you are taking that amount of pain relief and you're on Prostap but still in such severe pain X

D-LD profile image
D-LD

Exactly... I don't understand what's happening!

It does seem that my body gets used to the current treatment it's having and then it stops being as effective.

I've been on different contraceptive pills, mirena, zoladex... these are all great in the beginning but after a well they stop working.

If a hysterectomy meant I would no longer suffer like this then I would have one in the morning.

I haven't had more than 2 hours sleep in around 9 nights and that's just making everything worse.

I think I'm going to call my GP practice tomorrow and see if I can get an appointment. Face to face is always better. I wish it wasn't such a battle to get the help we need.

Go to A&E. You can be admitted to hospital that way and your GP is wrong, pain you can't manage is something to go to A&E for. (which she would know if she'd ever had to deal with it!). I had this sort of breakthrough pain on decapeptyl and went to A&E and no-one suggested I shouldn't be there. What else are we supposed to do?

Hope you feel better soon. x.

D-LD profile image
D-LD

Thank you

I'm thinking that I'm going to ring 111 - just see what they say.

But you're right, I'm not coping/managing with amount of pain relief and I feel horrid so I should go to a&e

My local a&e isn't at the bsge centre where I get my treatment for endo. I don't know whether to go to my local a&e or travel and go to the one where the specialists will be - can you even do that?

amy-28 profile image
amy-28

Hi go to a&e i was in the exact same position as you and getting no where and the only time i did is after i went to a&e with the pain then the ball started rolling more for me its like they don't take you serious unless you go thereto prove how bad you are which is awful! I'm sorry your feeling so down with the pain :( i was put on amitriptyline to help me sleep have you ever tried that it does work for me they put me on it after i was admitted? xx

Hope264 profile image
Hope264

Hi , hopefully you have gone to A & E or got some help if this is a worsening situation.

I wanted to ask if you've thought of getting something to help you sleep. Even over the counter remedies can be helpful when dealing with pain as long as you let your doc know and check any interactions. Pain always seems much worse to me at night and then the next day/s when lack of sleep is in there too. I think the nerves just fire off worse or something.

If you still have uncontrolled pain, it could be a sign something is going wrong and you should definitely get checked out sooner. If it is nerve pain, which I belief endo can cause if it is in the wrong places, this can be really difficult to treat in my experience, in hospital too. Heat, tens and distraction help me get through when it seems like there is little relief coming from the meds. Good luck getting some help & finding relief.

D-LD profile image
D-LD

Thanks all for replying and your concern!

My GP finally, after 3 days of begging, referred me to the emergency gynae assessment ward at hospital I'm currently treated it.

I was admitted and had a 5 night stay to get my pain under control...

Turns out I had an infection so my coil was taken out.

Thanks again for all your support

💛

Deb1511 profile image
Deb1511 in reply toD-LD

Sorry hadnt read all replies before replying, hope you feeling little less pain X

Deb1511 profile image
Deb1511

As those meds are highest of the scale your gp can have you admitted as they are failing to get your pain under control this happened with me and soon got things moving good luck and pls be very careful with those meds and ask them to check your kidney function of you on them long term x

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