INTERSTITIAL CYSTITIS/BLADDER PAIN SYNDROME (IC

Hello all,

Along with JRA and LS I also suffer from IC (as above). Does anyone have any home cures, treatments to suggest or just comment on this very annoying illness please?

[Tiggywoos]

Hi StillsdiseaseI’m so sorry you have IC .. I’ve heard it’s horrid . I’ve not had it but mother in law has and she is on long term low dose antibiotics .she tried loads of things, stopped drinking alcohol , no imflammatory foods but couldn’t get it under control .

I had to self catheterise for a year and constantly got infections so I can sympathise a little with you 😖.

I wonder if there’s any trials you might be eligible for ? Might be worth asking GP .

Take care x

[Hidden in reply to Tiggywoos]

Thanks for your reply I’ll let you know how it goes. Have a good day 😀

[Largather]

Hi. So sorry to you have this. I suffered for 2 years constantly, no let up at all. Many tests and antibiotics ect. When it's set in very few natural things work. But.. a new way of treating it medically has proved very successful and cured me in a week! My doctor decided to try a mix of antibiotic and anti viral (acyclovir, usually used for shingles/herpes) worked a treat! I've never had herpes or shingles but the mixing of the 2 treatments was remarkable and is starting to be used worldwide for IC. Have a word with your doctor. Good luck xxx

[Hidden in reply to Largather]

Brilliant news thank you, I shall bring it up at my next appointment.Thanks for sharing that with me x

[Treetop33 in reply to Largather]

Exciting news. Which antibiotic did they prescribe?

[Largather in reply to Treetop33]

Hi, I use either Cefradine (if kidney involved) or Erythtomycin. Both are safe if allergic to Penicillin and sulphur as I am. But the tests show the bacteria then they choose the appropriate antibiotic and add Acyclovir. Hope this helps

[Treetop33]

I use high doses of Mannose D, plus bio-kult and uva ursina and in combo that seems to work as I couldn't take any more antibiotics. I up the doses when gong through an attack and lower them to a maintenance dose when over it. However, I am sick of the cost of all this and would prefer another solution.

[Pumpkin2009]

stillsdisease, I know how much you are suffering. 20 some years ago, I suffered with IC and before I knew what it was, ended up having a complete hysterectomy only to find out the symptoms were from IC. This was all during when I first knew I had lupus. I still think there was a connection. I suffered for 2 years and it mysteriously went into remission. I wish I had some answers for you. I hope they have come further on knowing how to treat it. I do know a hysterectomy is not the answer. In my case, I did have huge fibroids, but I did not heal well from the surgery and it took over 6 months to heal internally and didn't cure the IC symptoms.

I wish you all the best.

Healing hugs.

[Hidden in reply to Pumpkin2009]

Thank you for your reply and horrified to hear your story ☹️I find the IC harder than LS to put up with but both are apparently not curable only treatable and very related to AI. When I have a flare it’s everything but in between its NEVER NOTHING! When I wake up the first job is to assess what hurts most today and to deal with it.

The thing’s we have to put up with hey! I know someone will always be suffering more then me so am grateful for my good days. Take care x

[Hidden]

I used to suffer quite badly from bladder issues,I have recurring kidney stones.After a lot of research and trying various remedies as I’d run out of antibiotic options because of over prescribing I came upon my “ cure” by accidentI found out I had pernicious anemia around a year ago and started treatment with b12 injections,I noticed after a time that my V atrophy was lessening and my bladder pain and frequency were lessening too.I now no longer have to make those 3 -5 night time toilet visits,I sleep right through the night with no rushing up to loo.

It takes a long time for a sensitive bladder to heal itself and settle down and I’m just thankful that this is one issue less I have to worry about now.

I would suggest anyone suffering with bladder issues buy some oral b12 spray from health store,you can’t go wrong with it,it is one of the water soluble vitamins so you’ll just pee out any excess,the oral spray method bypasses the gut so it won’t cause any tummy upsets either.

It will help a multitude of things do a bit of research on b12 deficiency and you’ll see many of the symptoms cross over with lupus.

Best of luck x

[Hidden in reply to Hidden]

You have my upmost sympathy on the V atrophy front!!!I’m off to the pharmacy first thing tomorrow to follow your advice, thank you very much indeed! 😁

[Hidden in reply to Hidden]

So I’m guessing you’ve tried all the usual suspects on that front lol none of which really work and cost us a fortune.It’s the most horrible thing to live with and now I don't even think about it.Do you also suffer from dry itchy ears inside,all part of atrophy and all helped by b12 supplementation,same with dry skin.can I suggest you look on Amazon for the “better you “ b12 spray it’s much cheaper there usually.best of luck x

[Hidden in reply to Hidden]

Not dry itchy ears but I get the odd very nasty and sore boil in my ears!

[sarahsea]

Sorry your suffering, it’s not nice at all the only relief I had was prescription Trospium Chloride x

[Hidden in reply to sarahsea]

I think it’s one of those AI associated Illnesses that GPS don’t know much about like LS snd they just hope we’ll give up asking for help about it. Thanks for getting in touch and sorry for my short earlier reply, I was having a grandma moment snd pressed the wrong keys and I’ve also replied to myself by mistake too - any cures for old age 🤣

[sarahsea]

Consultant also suggested D Mannose supplement

[Hidden in reply to sarahsea]

Thanks

[Hidden in reply to Hidden]

It think it’s one of those diseases linked to AI but kind of ignored. Have a good 🐣