Hi all. I've been taking opioid medication for over 10 years for endometriosis/adenomyosis. I'm now finally on the waiting list for a total hysterectomy which should get rid of the bulk of my pain - and therefore i will stop the pain medication.However, I've now to have a meeting with a chronic pain pharmacist (a 1hr nhs apt!) And i have a feeling they want me to stop my pain relief.
I understand its not ideal being on these meds but 1) I've been on them a very long time, 2) I've tried everything they've ever given me with no success and 3) my surgery is so close it seems ridiculous to mess up my meds at this point.
I take codydramol, tramadol and morphine. These allow me to live a semi normal life when i have a flare up.
I'm not very good in appointments and tend to break down and agree to anything. How can i can i advocate for myself? Thanks in advance x
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KM1986
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As far as I know ,there is a patient advocacy service in the NHS UK, but I'm not from that country ,so not absolutely certain.
Could you bring a friend or relative?
Failing that, do write down all your concerns and fears and desired outcomes on a bit of paper/ card.(big writing - so you can read easily if flustered.)
I imagine that any change to medication would only apply after successful operation. That should be your starting point . Show you are willing to accept change, but pain moderation has to be the primary concern of all parties.
The medical care for any Stepdown in opioid medication should be mapped out by the care team ,in writing, and signed off by your personal doctor (who knows you best- hopefully!😝)
Others, I'm sure, will come with more specific help in the UK.
I have recent experience in controlling chronic pain and was helped (ongoing) by my local Surgery via the medication clinician attached to the Surgery who will visit and monitor you until you reduce your medication satisfactorily. It is trial and error as we are all different but I am in less pain under her supervision than I have been for weeks. It is worth trying and is a free service under the NHS.
Hi, If I was you I would demand a Hysterectomy, do not let them talk you out of it. I had a Hysterectomy at the age of 30, mine was due to excessive bleeding that would not stop having had my last child. The surgeon would not do it for me because I was so young and in case I wanted anymore children. I already had three children all with additional needs so I wasn't going to have anymore. That is the only reason that he did the operation for me. But I had to beg first. This was the best decision I ever made. If you need to see a pain specialist I would go but take a friend with you for moral support. Please let me know how you get on. Take care. xx
Seems to me maybe the pharmacist doesn't know you're on the waiting list for the op, but even if they do I think it's worth making the point about why make such a change at this point. If you can take a friend or relative with you, otherwise look into the advocacy service: nhs.uk/nhs-services/hospita...
Wow I'm new to this community but what an amazing group of people - thank you all so much.I think when you're hanging on by the skin of your teeth until your surgery and the pain is the worst its ever been - it's just a very strange time to suggest coming off/reducing medication!
This will unfortunately be my 4th surgery and they've never asked me to stop my pain medication prior to an operation. Seems things change all the time though.
I am a forum moderator at Pain Concern and have been reading through your post.
I have included a link below to the Self-Management Navigator Tool that has been developed at Pain Concern to help you navigate healthcare appointments.
In this day and age I find a very difficult to advocate for oneself I recently went through the same thing about a year ago and I went ended up going to a different doctor I was in excruciating pain ending up needing an L4 L5 Fusion and the doctor that I was seeing prior to that refuse to treat my pain he wanted to just put a spinal cord stimulator which obviously wouldn't have corrected The L4 L5 problem that I had I think the best way to handle it for you maybe is to say listen I'm going to wait until after the surgery you do have that right all right is to have our pain treated unfortunately because of the epidemic with the overdosing Fentanyl and all this other BS we who are in severe chronic pain must suffer I've suffered for years I do not want to take opioid medication however if I take too much Tylenol and Advil as they suggest my stomach is so sick so I've gotten to the point where I just don't take it anymore I tell them right away like listen I need something for this pain you're basically giving up one thing that's bad for another thing that's bad you've got to pick the lesser of two evils I have ulcers in my stomach from taking too much Advil so they gave me Celebrex Celebrex gives me freaking diarrhea Tylenol makes me sick like wanting to throw up sick nauseous so what gives I've done everything that they ask but my last appointment I just flipped out I said enough is enough I'm not dealing with this this is not right and I was dismissed that's when I went to my next Doctor Who was a doctor I had seen prior for my last surgery when he did the laminectomy on my L5 S1 for my sciatic nerve root this has been going on for years it's sad that for the ones that do suffer chronic pain we go through the worst of it we have to fight for the right to just live a normal life and even with pain medication it's still very difficult for us to manage a daily activities I can barely get out of bed I'm depressed it's miserable I can't do the things I used to do I haven't gardened in 2 years and I have pretty much just given up I can't work right now cuz I just had my surgery at the end of October I wish you the best remember that your pain care is your choice pay attention to how your body feels and you can't just come off of opioid medication they need to wean you off and they should not do that until after your surgery that is what I would have suggest to them if they were my doctors I would say listen I've been on these for x amount of years they've helped me live my life let's wait until after the surgery cuz you're going to need Pain Care during and after the surgery anyway so it would not make sense to start decreasing now I wish you the best good luck sending warm thoughts and prayers your way
I think the problem we all face when on long term pain meds is are they doing what they should be doing, are they effective and or am I just addicted to my meds. Tramadol, which I take as well as others, is highly addictive. If you were to be taken off them it should be a gradual process otherwise you'll end up going through withdrawal which is horrible. I'd hope they wouldn't just stop everything for you, it would be horrendous. There's a reason we take our meds and if they take them off you it should be done in a controlled way.
Speak to your drs and in theory, if they take the problem away you shouldn't be in pain! If only it would be that simple!! I wish you luck with your operation and hopefully they can reduce your meds slowly
be very careful with the pharmacist we have one at our surgery who because I gave what he thought was the wrong attitude and answer stopped my gabapentin and fentanyl no withdrawal or anything because I said that my doctor had told me that he had told him that he dealt with me and if he did try contact me I was to give that answer.I did and he lied said my Dr had requested it I replied that I will speak to my GP and after he says its okay to speak to the pharmacist I would re book the appointment. The outcome was he stopped my gabapentin and fentanyl by removing them from my repeat prescription luckily when I discovered it I was able to get an urgent appointment with my GP and they were added back to the repeat prescription.I now refuse to speak to him if he phones me
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