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Interstitial cystitis

(10 Posts)
Sallywally1 Fri 17-May-24 07:10:56

Also called irritable bladder

I have written before about this. I have been awake most of the night in pain and weeding every half an hour. Test strips showed ++++ leukocytes. I have seen a supplement called Jude, it’s quite expensive. Does anyone have any experience of this and would it help my IC. Feeling a bit desperate and exhausted through lack of sleep. Very glad I don’t have to work.

Poppyred Fri 17-May-24 07:22:38

Unable to advise on how to stop your pain now, but in the long term try drinking a small glass of Kefir daily.

Sago Fri 17-May-24 08:36:18

I suffered terribly with this for years, my GP was no help.

I only have 1 fully functioning kidney so I had to find help.
After lots of research I cut out the following, caffeine, tomatoes (raw),strawberries, spirits and pineapple.

There are a few other triggers, as soon as I have had an irritant I know about it now, my decaf tea got mixed up recently and I was up all night urinating with the thirst and discomfort, it was awful, I don’t know how I lived with it for so long!

It has made an incredible difference to my life.
I sleep better, I get up once maybe twice a night, previously it was around 6 times a night.
I don’t dread car journeys anymore etc.

Please try it before you order the Jude.

Sago Fri 17-May-24 12:48:04

Bump

RedRidingHood Mon 20-May-24 15:08:54

Urologist told me to drink cranberry juice. However it's too acidic for my stomach but I have found cranberry tablets and since using them have had very few episodes.
Might be a coincidence but interesting about strawberries @Sago. I don't buy them out of season but had some last week and then had a night of painful bladder.

Sago Mon 20-May-24 19:24:28

Cranberries are an irritant too unfortunately.
D Mannose tablets are excellent, the OP needs to look at all the options, unfortunately she has not come back to us.

alchemilla Mon 20-May-24 20:14:43

It really isn't to be confused with "ordinary" cystitis, devastating as that can be. Please try to get yourself referred to a consultant AND to your local hospital pain clinic. The latter in particular did remarkable things for a relative of mine with it who previously had spent much of her fifties and sixties unable to commit to anything because of the regular pain. She had done the D Mannose, cranberry, kefir and removed stuff from her diet.

Jane112 Mon 20-May-24 20:31:19

I was advised by my urogynaecologist to cut out acidic foods, chocolate etc, I went to a dietician who told me about the IC diet, there is an app from IC Network which is very handy for checking which foods are blader friendly, that and D Mannose has kept me mostly pain free. If you're on other meds or diabetic check with GP/pharmacist if D Mannose is ok for you.

leniloud Sat 25-May-24 15:55:32

Message deleted by Gransnet for breaking our forum guidelines. Replies may also be deleted.

Sallywally1 Sun 26-May-24 11:02:57

Thanks. I am a great believer in the work of professor malone Lee, now RIP unfortunately. He maintained the standard uti test at hospitals of as he put it ‘not fit for purpose’ and recommends Ciprofloxacin full dose for seven fays and then three months low does. He maintained patients did not form a bacterial resistance on this regime. I have been suffering and I mean suffering for the past week with an infection with bad pain in the bladder are. I persuaded my GP to prescribe the above Cipro regime and touch wood the infection is a lot better. Prof malone lee spent his entire career studying this condition.

I will try some of the ideas you all mention. Thanks.