kidney reflux / urinary reflux

[Mothercross]

hiya, so i have kidney reflux. Ive had it since i was about 14 now 35. Everyv4 years i have my urethra stretched to stop urine going back up into my kidneys. I have been on Codeine 30mg for nearly 10 years now and it works nut my gp has really messed me about. First they said they arent giving it out on the nhs anymore, lie, then they just stopped my prescription without telling me or even speaking to me about changing my medication, then they gave it to me again for about 4 weeks then stopped it again and sent me a txt message saying its not used for urethral pain. My pain isnt in my urethra, its in my kidneys. Years of the kidney reflux has damaged my kidneys that is why im in so much pain. I have never one said i will ONLY take codeine, i just dont want to be in pain everyday. I have 2 children and one on the way, this pain makes me pass out. They have now started been difficult again. I dont know what to do, im so frightened they wull stop it and i will have no pain relief at all. Surly there are other medications i can take on a long term basis? Could anyone shed some light please, im pulling my hair out. Thanks 😊 xxxxx

[Mistee]

I'm so sorry you have to go through this!!!

Have you considered finding a new GP? It might not be easy thanks to CV-19, but I would think it's worth a try!! I'd even be tempted to ask for a renal referral or pain clinic referal (or both) so a specialist can confirm you should be taking this medication!

I had 3 stents last year thanks to kidney stones and the pain from the reflux was horrific, lots of agonising, violent vomiting and nearly passing out a few times, I know how utterly exhausting and debilitating it was just for that short time so I really, really feel for you!! Xxx

[Mothercross in reply to Mistee]

Hiya, thanks for replying. Its awful pain isnt it. I cannot see a pain clinic at the moment due to been pregnant. As soon as my baby is born im going to have a meeting with the practice mabager as i feel ive been lie to, neglected and pushed to aside as my pain and health are not important. I am also ringing PALS and going yo speak to them asap. I feel drained and so fed up. Hot water botyles are my best friend at the min lols xxxx

[PainConcernHelpline Moderator Community Champion Pain Concern]

Hi Mothercross ,

I'm very sorry to hear that your doctor is not being a good partner in managing your kidney reflux pain.

Firstly, I understand that your pain results from kidney damage - can I ask if this something that is monitored by your doctor? Before any pain medication, it is important to make sure that your pain does not signal a serious condition.

With regards to your pain management, it is your right to receive treatment from your GP - their job is to help you, after all. However, it is possible that there just has been a misunderstanding or miscommunication between you and your GP - it can happen to the best of us.

We have a leaflet on managing your healthcare appointments that can help you to make sure nothing gets missed when speaking with our healthcare professional. This can be accessed here: painconcern.org.uk/managing.... Next time you speak to your doctor, perhaps you could take someone you trust to be there and support you during your appointment.

If they cannot give you what you asked for, they are expected to offer alternatives, otherwise, you can indeed ask to be treated by someone else.

PALS (Patient Advisory and Liaison Services) can also help with discussing your treatment options and your concerns about the care you receive. You can find your local PALS here: nhs.uk/service-search/other...

Finally, you can always reference NICE guidelines when it comes to your treatment - these can help understand what is the general approach to treatment of any condition. I couldn't find the right page relating to kidney reflux, but I did find one about prescribing opiate medication, such as codeine here: nice.org.uk/guidance/cg140/...

Hope you will get the treatment that really helps you soon. Stay safe!

Moderator 3 on behalf of Pain Concern

[Mothercross in reply to PainConcernHelpline]

Hi, thank yo so much for all that information, i will have a good look through it. My kidney is getting damaged because of all the infections ive had and because of urine going back up into them. When the pain really hits it causes my back muscles to spasm and its unbearable as this can last for days. I was on 5mg of diazapam when needed to help with that part and it really helped, and to be honest 28 tablets used to last me a few months but my GP stopped them stating they are not given out on the NHS anymore which i again found out to be a lie. I don't belive there has been a misunderstanding as i have spoken to a number of gps at my surgery. I have made it very clear how this is affecting my day to day life and still i feel they dont have a care in the world aslong as they getting another paitent off diazapam or codiene for their numbers. I have begged and pleaded with them. I have told them about me passing out with the pain and still not a care. When i was 9 months pregnant with my son i passed out on the toilet and landed on my stomach which resulted me ending up at Hull W&C hospital, i could of lost my child 😢 i dont see why i have to beg to not be in pain. I am going to take this further. The worst part of this all is i feel bad for constantly asking to not be in pain, i don't want to annoy them i just want a semi normal life. No other checks have been done on my kidneys, i an due my operation in October but due to been oregnant i have to wait another 6 months after I've had my baby before they will even see me.

Xxxxx

[PainConcernHelpline Moderator Community Champion Pain Concern in reply to Mothercross]

Thank you for explaining, Mothercross .

I am truly sorry to hear about your bad experiences with GPs. It is not right that you feel you have to beg to get treated. I can only imagine how scary it must have been to pass out from your pain and it is completely understandable that you want to take next steps.

I hope the resources I shared will be of help for this, but I will pin here the website for Citizens Advice as well. citizensadvice.org.uk/ . This helps you understand your rights - you just need to choose where you live, and you can browse under "health".

I copied the following from their England page which may be useful: "You can change your GP at any time you wish without having to give a reason. If you tell your local Clinical Commissioning Group (CCG) that you want to change your GP, they must give you details of how to do so and provide you with a list of alternative GPs."

Please know that you are not at all annoying anyone with your request to be treated - you are in pain and it is doctors' job to help you. If they cannot offer you one type of medication, they should offer an alternative. In any case, your treatment has to be agreed by your GP and you together.

I really hope you find the right help soon! Wishing you the best,

Moderator 3 on behalf of Pain Concern

[Sallyderek]

That is absolutely shameful of your doctors. Have you seen a specialist?

If you see a specialist ring his/her secretary and explain the problem and ask them if they can write you up a suitable prescription. Then your docs will have to supply them... good luck sweet xx

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I have had to have my urator re-implanted 3 times since I was 15. Each time it stopped the horrible ache in my kidney. I last time I had it done was successful too. But several years down the line all got worse and my urine favoured the look of custard. I was taken into hospital and had to have my left kidney removed due to it being diseased. I honestly suggest you insist on a scan of your kidney to check all is okay with it. But from my thoughts they surely can't leave you in this state as seems for sure your urator is causing problems once again. Demand a scan or xray as you need help fast. All the best to you.. xx