I have just looked on previous posts for this illness, which has helped. I also suffer from Pancreatic Insufficently together with Chronic Pancreatitis. (My body does not produce enough enzymes to digest food.) This is also very painful if I do not take the right amount of enzymes when I eat. It is very hit and miss on how much to take. Since Good Friday I have had 4 UTIs and 3 lots of antibiotics. Last Saturday my Dr phoned me and when he told me I have got Interstital Cystits as well as Fibromyaliga. It just pushed me over the top! Apart from antibiotics and pain killers and drinking plenty of water what else can I do? I am very sensitive to medication, food and everything else!!!
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Hi Rose,
oh dearie me, not nice at all!
I have Painful Bladder Syndrome (PBS) which is sometimes also called Interstitial Cystitis, but it shouldn’t be, cos it’s without inflammation, like in your case.
Really hope someone has ideas for you!
Hi Rose,
Thanks for your question. Living with so many health challenges can be so isolating and distressing. Your situation must be so difficult for you. I certainly hope you can find a solution, at the very least, reducing your health troubles.
I am not knowledgeable in this area specifically, but one thing I can say, with the knowledge I do have, is that if I had Interstital Cystits, I would daily have probiotic foods such as yoghurt and kefir; kefir especially, as it contains about 50 known good bacteria.That beats any bought probiotic. If you are able to make it yourself, with kefir grains, it will be so much cheaper.
There are two types of kefir. Water and milk kefir. People who don’t tolerate lactose often tolerate milk kefir because it produces the lactase necessary to digest the lactose in the milk. If that is still a concern, try other things like water kefir or sauerkraut, beet kvass (fermented beetroot) or other fermented foods. Note that these can all be made at home, if you can’t buy them, or they are too expensive to keep buying. If all else fails, I recommend you find a very good, comprehensive probiotic or a couple of types, to take regularly.
Having a good balance of good bacteria should help your body to prevent and fight the infections by itself. This approach should help keep you off the antibiotics, and prevent you from forming an antibiotic resistance.
I hope this helps. If you have any questions, please don’t hesitate to ask. 
It is lovely to meet you. All the best.
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My understanding is that interstitial cystitis is provoked by foods, so possibly the thing to do is to try to work out which foods are giving you jip and see if they are ones you can cut out.
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Thank you for your advice. I am already on a strict diet. No wheat, no gluten, no dairy food and no fat. I do not know what else I can cut out.
No, I understand completely!
The only thing I can think of is to cut out one thing a week and see if it makes a difference, then reinstate that and cut out a different thing. You might find something or you may go a whole year and not find anything new but at least by experimenting with one thing at a time, you’ll not be starving.
So, if you like a variety of fruit through the week normally, made up of apples, bananas, oranges, strawberries, blueberries etc, go for a week with no apples. Then do a week with no bananas: make up the difference with something else, so don’t starve, but try removing a food for several days and see if it makes a difference. If it does, experiment longer. If it doesn’t, move on to another food.
Hi SophieJo. Thank you for replying to my post. I have googled Kefir to see what it is. I do not think you can get it in this in England but not sure. Also I cannot tolerate probiotics!
For me it’s all the “tasty” stuff that inflame my GI/GERD and bladder: hot, spicy, minty, onion-like, sour/acidic/citrus etc, and of course caffeine/tea/alcohol. (“IC/PBS diet”) Tried those too?
In Australia, individuals and small online businesses sell Kefir grains.I prefer the grains over a starter culture, because once you buy the grains, they multiply themselves when being used to make each batch. This means you may only need to buy them once, if you keep feeding them (fermenting with them). Thankfully, I find the Milk Kefir Grains to be quite tolerant of neglectful periods. 
You may like to try buying them from Freshly Fermented, Happy Kombucha, Kombucha Organic, Kefirko or other websites, in the UK. They are well worth it.
All the best. 