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Blueangel

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Posts: 121
Reply with quote  #1 
I really need some help and advice please.
What does your IC pain feel like ? The reason I'm asking is because I also suffer
with Diverticulitis and am finding it difficult to know which pain is causing what!

Thanks.
zena

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Posts: 87
Reply with quote  #2 
Hi,
The pain I experience when I am in a flare is just so debilitating.
It is a stabbing hot burning pain within the bladder.The best I can describe it, as if someone is prodding my bladder with a red hot poker.It makes me scream out in pain.
This upsets my husband & family as they feel so helpless.
The only drug that will help me is Voltarol tablets.I have a warm heat pad and go to bed until the pain has subsided.
But no two people experience the same type of pain.
Too much sugar & salt is bad too.

Hope you soon can get help with your pain & discomfort.

Best wishes,

Zena
Blueangel

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Posts: 121
Reply with quote  #3 
Hi Zena.
Thanks for posting, I appreciate it.
My pain is very similar, I describe it has having a bladder full of broken glass, it burns so bad.
I can't stand heat near the pain, I have to use ice packs.

Could you tell me if you are having any treatment that helps?
I'm at my wits end with it. Can't eat anything without it flaring the pain.

Thanks.
Blueangel

Registered:
Posts: 121
Reply with quote  #4 
Can I ask what is the point of this forum if it's members don't participate
in helping each other ?

I ask simple questions but hardly get any answers, the moderators are usually very good at answering
but other members just don't bother.

Time to exit this forum I think.
Jeaniec

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Posts: 4
Reply with quote  #5 
Hi BlueAngel I'm sorry your not getting the response you'd hope for.maybe,in my case anyway ,it's because we just don't have the expertise and we are desperately searching for answers for ourselves I'm not sure but stick with it because right out he blue you will get a response that maybe worth it's weight in gold.we are all in despair at this horrible affliction and its variety of impacts on people lives is truly shocking but even if it means back tracking through multiple posts you can always find a little glimmer somewhere that gives you ideas and hints and apart from anything else it's a great way to pass the boring hours at night when the naughty bladder has you pacing up and down wondering what on earth to do with yourself eh?
Stick with it it's a great forum and good luck I do hope someone is able to to give you some more advice like zenia has.
Have you tried antihistamine for the food issues and bottle washing it's so soothing do it when your peeing it relives the burn and no toilet tissues at all all just use a facecloth to pat yourself dry after bottle washing ,two days and you'll feel a difference.and get a copy of Angela kilmartins book it's full of down to earth hints
Good luck X
Blueangel

Registered:
Posts: 121
Reply with quote  #6 
Hi jeaniec
I am a member of other forums where everyone is in pain and searching for answers
but most take the time to help each other where they can , I myself have replied to many even though
I am feeling really ill myself.
I'm sorry to say that I have tried all you suggest without getting any relief.
Thank you for replying , I feel so lost and alone with this terrible illness.
Moderator_Jen

Moderator
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Posts: 973
Reply with quote  #7 
Hi Blueangel

I too suffer from bowel issues and it can be difficult to different between bowel and bladder pain. I find that if one is kicking off the joins in.

In terms of bowel pain, I get a lot of cramping/contracting pain which is usually higher up or slightly to side of my abdomen. My bladder pain tends to be much lower in the abdomen and is a constant heaviness and spasms, I also get pain in my urethra and vagina. This varies in type and intensity. I get burning, spams and shooting pains that feels like I'm being stabbed by a red hot poker.

In terms of pain management I beilieve that being referred to a pain team mght be a good option for you. I've been under my local pain lteam for several years and it has made a world of difference to my ability to cope with my chronic pain and keeping my pain to a manageable level (most of the time). The pain team have very supportive and creative and they have given me a lot of options to manage my pain, especially when flare ups happen.

Bladder Health UK has a qualified nurse helpline on a Wednesday, perhaps giving her a call and asking for ideas of pain relief that you could discuss with your Dr might hpbe helpful?


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Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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Jeaniec

Registered:
Posts: 4
Reply with quote  #8 
Hi guys I'm just reading some very interesting nteresting info on GAPS and digestive problems and leaky gut.maybe you would find it interesting.Im going to see a herbalist tomorow who specialises in treating this and again it seems to be all about the diet and gut and linings ( or lack of)and bacteria. I'm finding it very informative and looking forward to some discussions with him tomorrow also kinesiology greatly interests me so I'm having a chat with a practitioner of that as well.I have IBS ,really severe sometimes and usually my food comes out pretty much the same way as it looked when it when in,sorry if tmi lol,so I have a feeling that I will hugely benefit from more insight into solving this and easing off the bladder problems.pain clinic sounds a good idea if only to have someone show an interest and maybe give some good suggestions.good luck.
chrysalis

Registered:
Posts: 142
Reply with quote  #9 
Hi Blue Angel,
Not been on here much lately, I suppose because I am one if the lucky ones who has improved so much that IC is not affecting my life too much anymore, so It's not really been on my mind too much, but having said that I do still feel for those people who are still suffering, so in answer to your question of how does it feel, I would agree, it was like a hot poker inside of me, I needed to hold myself between my legs,when it hurt, I had terrible aches in the back of my knees, probably from the nerves being affected in my raw bladder and the pain being transported to my legs by the sciatic nerve. This would last until it was time to empty my bladder and then this gave me some relief.

I have been having bladder instillations now for 3 years and found they really do help. I only have them every 2 months now, and my nurse is extremely gentle and she doesn't hurt me at all. I don't drink spirits, or carbonated drinks, (don't like them anymore !!! ) eat raw onions, citrus fruits, or raw tomatoes but can now eat practically everything else. Before every meal which I think might be suspect I take 4 Prelief tablets, before every alcoholic drink such as rose wine, or larger beer, which I seem to be able to tolerate now,I take 4 Prelief. I take 2 Buscopan at night, drink Actimel with 1000mg of cod liver oil, and 1000 mg glucosamine every morning.

All I can say is persevere , try and find out what suits you, acidic food, and sugar is not good for the body never mind the bladder which I believe is a major cause of IC. Neutralise your food with either Prelief, or bicarbonate of soda, to stop the urine turning acidic and burning your bladder, once you stop abusing your bladder with these type of foods, it starts to heal and improve, it's a slow process, but with determination, patience, trial and error, there is light at the end of the tunnel, it can get better, well it did for me, and I am living my life by these rules and can forget much of the time that I have IC. Good Luck. 👍

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