How do I make the pain stop. I don't want... - Endometriosis UK

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How do I make the pain stop. I don't want to call an ambulance :-(

Jofus89 profile image
19 Replies

Because of the prostap I'm in agony in my legs, back, chest and sides. I went to a&e before, got admitted and told it was in my head. Iv got the pains again and I don't know what to do. I'm in agony but they won't believe me. I'm scared of that stupid hospital and it's scary staff. I don't have anything else I can take here. Iv taken codine, naproxen, oxycodone and paracetamol..... I'm out of options but I don't want to go to hospital because they don't help me either. I'm writing this threw tears hugging a hot bean bag. Please someone have an idea for me x x

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Jofus89
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19 Replies

Is there a different hospital A&E that you could go to?

It sounds as if you need to get some strong pain medication.

How long have you been on Prostap?

Jofus89 profile image
Jofus89 in reply to

If you call an ambulance round here then they will only take you to one place. I tried :-( but I can't sit up long enough to go in the car to another place. My 4th one is due on Friday. My gyny said don't take it though luckily.

in reply to Jofus89

I do think you should call NHS 111. You need medical assistance

Jofus89 profile image
Jofus89 in reply to

They won't send a dr out. They never do here unless your terminal. They'd rather pay for a taxi for you then send a dr out and I can't sit in a waiting room my legs hurt to much x x x

in reply to Jofus89

I called 111 and they sent an Ambulance out.

The paramedics will be able to give you an injection to help with the pain

Jofus89 profile image
Jofus89 in reply to

What if they try to take me? I can't go there again. I'm having my lap there in a weeks time and that's enough for me. I can't go again!!! X

daffodil profile image
daffodil

Please if you are at the end of your tether call out of hours GP- a Gp will be able to assess your symptoms and if he thinks you need hospital will put you in or if not will at least give you stronger pain meds. OR if you are in unbearable pain call an ambulance. Once I wa sin so much pain and like you disbelieved and sent home from A and E the week before,.I called NHS 24(Scotland) and said if someone didn't help me with the agony, I was going to take my whole pack of dihydrocodeine as I couldn't take any more. I still cant believe I said this but I knew something was seriously wrong and like you was terrified of being dismissed in A and E and told to tale paracetamol. Should not be suggesting this, but it worked and within an hour I had out of hours Gp and within another I was in hospital seriously ill with a b urst cyst and kidney infection.

You are the judge of your own pain and we all can cope with different amounts.If you are on Prostap you must have an endometriosis diagnosis?Is there anyone with you or could you call upon and family member or friend to come to you, perhaps go to A and E with you?

Sending you a great bug hug and please let me know how you get on.

Jofus89 profile image
Jofus89 in reply to daffodil

My mum would take me to a different a&e but I can't sit in the car that long. I'd pass out.

The only hospital the ambulances will take you to I'm terrified of :-( they told me I was faking it before. I don't know what to do. I'm going to be stuck in this hell forever because what the prostap runs out my endo pain will kick off again. My legs and back are in agony :-( I don't know what to do x x

daffodil profile image
daffodil in reply to Jofus89

If the pain is so bad that your are passing out then you need an ambulance now.They will take you seriously this time, as severe pain is observable in your body posture and observations .

What impatient says is true as GNRH work by turning off hormones,but you have to go through a flare stage where the brain is confused and pumping out more oestrogen.This could be what you are experiencing?Unfortunately it can take 3-4 months to totally settle and during that time they must give you stonger pain relief.If not you just don't take another jab,I did have a flare stage with Decapeptyl( another gnrh) but by month 2 my pain was gone!

And yes,when it stops back comes the pain worse than every.These drugs are no cure,but as cuddly barb says we are all difdferent in how we respond and some of us have been greatly relieved of unbearable pain with them.

What age are you? Can you Mum take control and phone for help?

Jofus89 profile image
Jofus89 in reply to daffodil

My pains are in my legs and back, it's not endo pain. That's what's iv got to look forward to when these pains finish. The first month of this jab was bliss!!! It's the healthiest iv felt in well over a year now!!! Then it all went wrong. When I was in hospital before I passed out 3 times. 2 of which where the day they released me and the other one they said didn't happen because they didn't see it. Even though I was begging the nurse to stay before I went down. I warned her but she had some important eastenders related issues in the room next door to deal with. I'm 24. My mum doesn't know what to do because she knows that the ambulance will only take us to the place I don't want to be. It's ik, iv resigned myself to taking a few extra pain killers and getting pissed until I fall asleep. (That sounded a bit suicidal, not intended!)

Impatient profile image
Impatient

In a way the hospital is correct - it is in your head.

The drug shuts down your pituitary gland - that stops hormone production that regulates metabolism, heart rate, blood pressure, memory, and temperature regulation as wel as a host of other body functions.

Without the hormones - your body goes haywire. So there is no cure- you do have to ride out the pains and be sure not to carry on with the next dose. Stopping the drug will then cause your brain to reawaken the pituitary gland which re-starts hormone production in the weeks ahead and that should stop many of the side effects.

If you need strong pain relief -then you must go to A&E, the patient advice leaflets tells you to do that.

They cannot stop what has caused the pain or reverse the Prostap affect on all hormones - but the can and should give your pain relief.

Beta Blockers may help with the blood pressure and heart rate if they are causing the agony round the body wil a huge increase in bloodpressure.

Many of us have suffered that on these drugs, and I am sorry but you do just have to rest up and bide your time for the most part. And definitely quit taking any more of the drug.

It is mean to improve your quality of life and it does for some ladies - but if you react as you have done then clearly there is no benefit or reason to remain on the drug any longer.

These are cancer drugs - they are very strong and the effects can be absolutely wicked as you are finding out.

And there really isn't much can be done about it except the sticking plaster solution of covering it up with strong pain meds so you can at least sleep through it for a while.

It may ease off in a few days- it might take a few weeks. Just random how it will affect you from now onwards till the pituitary gland wakes up production again. It is horrid and my deepest sympathies - have been there myself and NEVER AGAIN would I want that feeling.

in reply to Impatient

These GNRH drugs have given ladies a much needed break from the pain and suffering from endometriosis.

Like all treatments...., GNRH works for some and not others

Jofus89 profile image
Jofus89 in reply to

The first month of it was AMAZING!!! Apart from a few small side effects but they didn't effect my dad to day life so it was ok. But since the 2nd one iv been in bits and it's only getting worse. And the symptoms change to. Like iv had diareeah for 9 days and it was explosive but I haven't been poop at all for two days even though my belly is still turning like it does when you have a bad belly. Which is what I'm pretty sure has caused this pain in my legs/back/hips x x

Jofus89 profile image
Jofus89

I do need stronger pain relife but I can't go to a&e. My fear of that hospital is greater then any pain. I can't explain how horrible they where to me last time. And I never get pain relife because they can never get a vein on me for some reason. So they give me paracetamol pills and tell me off for throwing them up.

Jofus89 profile image
Jofus89

Thanks for all your advice but I can't go to the hospital and the dr won't come here so I'm stuck. I'm going to just curl up and keep my family awake for yet another night. Night all. X x

Jofus89 profile image
Jofus89

Iv gone for taking one more severdol, codine, naproxen and paracetamol and I'm washing it down with a nice cold kopperburg. If anything it might help me sleep x

Jembee profile image
Jembee

Sorry to hear you are still suffering hun. Sending you big hugs xxx

Immunewolf21 profile image
Immunewolf21

Right as an A&E nurse myself I'd advise you to go, as soon as you speak to a trained nurse tell them you are worried because you were accused of making up the pain before and say that you are due surgery but have taken all prescribed meds, then if they ignore you after this tell them you'll get a solicitor, even if you don't intend to it will make them think!

Herdy profile image
Herdy

I had the exact same reaction to Zolodex. How long does Prostap stay in the system? You need to go to a different hospital to find someone who listens or to get a pain relief plan in place while you wait for it to come out of your system. You're not making it up, there are just alot of people out there who don't understand the condition, treatments and the side effects. I hope you get the help you need. X

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