Hi,
Does anyone else here have interstitial cystitis (bladder disease) and CFS? What protocol are you using to feel better? How are you coping? I am currently working on an anti-candida program and using alternative medicine to help with the symptoms. If anyone out there is in my boat, I would love to hear from you! Miss Susan

Hi there. I was diagnosed with fibro a while back. I have suffered from bladder infections and cystytis for years on and off. It's not a hygiene issue, I am very clean and know the front to back rule, honest . Mostly I present with symptoms but urine test come back negative and when I say symptoms, I am talking the worst pain ever...more than just an average cystitis flare up. I have heard a little about IC. Am I right that it is hard to find thus hard to diagnose? With the Fibro I can suffer quite nasty fatigue at times...just wandered if there might be a link.

I was diagnosed with fibromyalgia quite a few years ago. At first I thought it was just a big word for "I don't know what's wrong with you", but as the years went by I learned to take it more seriously. During this time I developed pain in my abdomen, right where your bladder is. I never got a diagnosis of interstitial cystitis but the pain was so bad it kept me awake at night. While I was doing some online research about bladder pain I came across that condition and the symptoms fit mine perfectly. Also, I have cysts in odd places like the palm of my hand, soles of my feet, on my knees, and a grapefruit sized cyst on my ovaries which resulted in a complete hysterectomy. Anyway, back to interstitial cystitis - here is a link to a website with a food list I found helpful. Its surprising which foods can cause problems. My worst offender was soy. I am much better since removing all soy products from my diet. Low carb eating helps with interstitial cystitis and also with fibromyagia. Here's the link:

http://www.ic-network.com/handbook/diet.html

Hi,
Interstitial Cystitis is where the gag layer (inner lining) of the bladder is damaged and the bladder is ulcerated and bleeding. It's painful and difficult to treat. There is no known cure. Many sufferers also have fibromyalgia and other disorders too. My condition came on after I had a friend that refused to pull the car over to let me use the restroom. I also had been on long term antibiotic therapy for acne. My othe long list of disorders are: hashimoto's hypothyroidism, CFS, fibromyalgia, meniere's disease, pre-diabetes, hormonal imbalance, etc. and so forth. I'm glad the diet is working for you. I don't follow the IC diet. I find it to restrictive and it doesn't really help me. I'm mostly fond of low carb. Thanks for responding to my post! Susan

I don't follow their diet either. I just refer to the food list once in a while to see if I'm eating any offending foods. When I stay low carb I'm usually ok. Well.... better, but it doesn't ever really go away. Your list of disorders is a long one and, IMO, most all of them will improve if you stick with a low carb diet.

Wow, thanks for that. Certainly something to think about. I drink loads of carbonated water and eat lots of tomatoes...two out of the five worse foods for causing flare ups. I am going to try stopping the fizzy water and the diet drinks...see if I notice any change. Of course I realise it could be many things causing my problem and it might be that I will have to eliminate all possible triggers and add things back slowly. This has to be worth a try but I think I'll find it tricky. Especially as a lot of the possible causes are my fav things to eat.

I have IC (as well as FM and CFS and Endometriosis) and when it was getting really bad, I found The Body Ecology Diet, and found when I follow it (and take Marshmallow Root capsules, which it seems have the same effect as Elmiron in coating the bladder lining, w/o the huge price tag) my symptoms are almost non-existent.

I've noticed that I seem to have stomach problems, along with it; whenever I get off the diet,my stomach bloats up (especially when I have sweets; because of this, and the fact that my mother, who also has IC, a much worse case than mine, did an anti-biotic regimen followed by an anti-fungal regimen and improved, I strongly believe it is related to Candida, explaining why the B.E.D. diet, which is high in probiotics, helps.

Something to try...Hope you find something that helps!

Years ago when I had a bad case of Cystitis (and many recurring bladder infections) my urologist did a silver nitrate wash/flush of the bladder. Basically the bladder is filled with this solution and I was asked to "hold it as long as I could stand to". He explained it basically cauterizes the inner lining of the bladder. Maybe a visit to an urology specialist is in order?

Hi, I have IC and Celiac. I also probably have either CFS or Fibro - I don't have a diagnosis with this because the specialist said he did not think the diagnosis would be helpful to someone of my weight!! I didn't realise that CFS could be used as an excuse to stay fat!

My flares from IC are very easily attributable to certain foods/drinks because I'm in pain within 30-60 mins of eating or drinking them. Due to IC and Celiac I have a huge list of foods and drinks that are forbidden to me (unless I want severe pain and/or diarrhoea). The only thing I can drink is plain water!! On the plus side it is helping me stick to low carb because there are lots of low carb foods I can eat and very few high carb foods that don't give me symptoms (apart from chocolate, I still have to wrestle my chocolate cravings )

I'm currently on amitriptyline which does help the IC, makes me feel exhausted but at least I'm not running to the loo every 10 minutes, and my sleep is less interupted. I also take ranitidine when I have a flare.

I'm interested in any alternate remedies as I don't like taking these meds and would prefer a more natural solution.

Lee