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#503640 - 05/24/14 05:50 AM Interstitial Cystitis?
Grumpyally Offline

Registered: 01/24/12
Posts: 419
Loc: UK

I thought I was suffering from a UTI but now I am not so sure. I have been taking D'mannose but went to the doctor to have my urine tested in case it was not ecoli which is what d'mannose is effective for the most common cause of a UTI. My urine show as an infection but was high in protein. It is being sent off to test in case of infection. I have a script for antibiotics but really don't want to need to take them.

I still have discomfort and a pulling sore achey feeling over my bladder I also have pain across the lower back that comes and goes and pain down the inside of my legs/groin? which I think I have had once during a flare. It is uncomfortable to walk after sitting.
My urine was cloudy but isn't so much now though still some 'bits in' after taking the d'mannose but I would have thought the pain would have eased by now. I don't have the pain on urination (and didn't) just the discomfort and feeling of needing to go and sometimes warm as if I have been swimming.
I googled Interstitial Cystitis and one of the causes is the good old immune system attacking itself so I am wondering if this is a new type of flare for me frown I have tried to be careful not to eat anything that would aggravate the condition but having googled Interstitial Cystitis rather than UTI the dark chocolate I have been eating can make it worse (I know sugar but a girl needs some treats!)

Does anyone have any experience of this and advice!
NSD almost all the way
No dairy hard cheeses occasionally and homemade ghee
Still trying to work out what makes me tick and what makes me drop

'Chew your drinks and drink your foods'
'Let your knife & fork do the work of your teeth and let your teeth do the work of your stomach'
Mahatma Gandhi

#503648 - 05/24/14 03:58 PM Re: Interstitial Cystitis? [Re: Grumpyally]
MollyC1i Offline

Registered: 01/21/04
Posts: 9843
Loc: Brittany, France (since Nov 08...
Grumpyally - don't play with a bladder infection. Can lead to pyelonephritis, kidney problems - that you don't want, can end up with severe kidney damage. Best to take those antibiotics, knock it on the head before it goes roaring away to do more damage hugss
MollyC1i - Riding OutAS

#503654 - 05/25/14 08:31 AM Re: Interstitial Cystitis? [Re: Grumpyally]
Sue22 Offline

Registered: 01/13/08
Posts: 21346
Loc: Upstate NY
Yes, what molly said! Take those antibiotics! As molly said, an untreated bacterial UTI can progress to the kidneys, etc.


Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

#503667 - 05/25/14 11:04 PM Re: Interstitial Cystitis? [Re: Grumpyally]
rumble Offline

Registered: 01/31/09
Posts: 4501
Loc: NE Oklahoma
It's been suggested that I might have this, though the cystoscopy was normal. I've had what seem to be UTIs with no bacteria seen microscopically (and no bacterial growth on culture). For the past 3 or so years, I've taken a nightly 50mg Macrodantin capsule to keep any bacterial growth at bay. Take a couple months off each year just for the break. Have tolerated it fine and had no extra infections at all. So they are going with just a siege of overactive bladder and gave me some samples for it. After reading the side-effects, I opted to skip the new drug and see if my new rx of hormones helps more. (dry mouth and dry eyes don't sound fun. Have to boost fluids due to the extra fiber I take due to taking opiates, so I don't relish those side-effects. Hoping the hormone replacement helps me more.)

Like the others say, you've got to get some proper antibiotics if you've had an infection diagnosed. What did your tests finally show? High protein isn't really indicative of an infection. High protein shows that there are some kidney issues. There shouldn't be much protein in urine...except possibly in the case of dehydration and some other stuff. If it's not an infection (dipstick would tell almost certainly, but a culture would be the best test of presence of infection), it's possible that it could be IC.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9

#503684 - 05/26/14 01:58 PM Re: Interstitial Cystitis? [Re: Grumpyally]
Grumpyally Offline

Registered: 01/24/12
Posts: 419
Loc: UK

Thanks for your replies and concern, don't worry the minute I feel it is getting worse I will be the first to run to the chemist with my prescription. My mum has had pyelonephritis. That's why I saw the doc on Friday as its a Bank Holiday weekend here and I wanted some insurance in case it got worse. So far it seems to be under control (I changed brand of D'mannose and its made a big difference) All the aches and pains have gone smile

@rumble The lab results might be back tomorrow so should know then if it was an infection or not. Interestingly although I am sure not related I recently had an ultrasound scan to check me out and one of the things they found was a 3mm cyst on one of my kidneys but apparently this is not uncommon and they have ruled it as ok. I hope you manage to control yours without needing the new drug.
NSD almost all the way
No dairy hard cheeses occasionally and homemade ghee
Still trying to work out what makes me tick and what makes me drop

'Chew your drinks and drink your foods'
'Let your knife & fork do the work of your teeth and let your teeth do the work of your stomach'
Mahatma Gandhi

#503692 - 05/26/14 07:44 PM Re: Interstitial Cystitis? [Re: Grumpyally]
Dreamflyer Offline

Registered: 10/29/13
Posts: 52
I had a horrible time with these type symptoms for years, never showing up as infection except once. At the worst phase, I was urinating 18 to 28 times per 24 hours, exhausting and dehydrating! I also had the inner thigh pain and internal pains but mostly intense pressure and constant urge. When I started methotrexate, surprise, like magic, my urinary system quickly normalized. I believe it is inflammation of the nerves, because the urologist couldn't find any physical problems. Just one more way AS invades our bodies. I'm so thankful that this symptom is now controlled, as it was a living nightmare in addition to the pain and other hardships of AS.

#503785 - 05/31/14 06:08 AM Re: Interstitial Cystitis? [Re: Grumpyally]
bettyrawker Offline

Registered: 03/12/12
Posts: 751
Loc: Oregon
Hi Ally!

Up until this week I had never heard of intestinal cystitis, but just yesterday I was reading through a new friends blog, and she overcame that condition through a very strict GAPS diet. I know you are already a big fan and follower of GAPS but thought maybe you would find some comfort in reading her blog.

We recently connected and she is also publishing a recipe book on food and health (like me!) And we are including a recipe from each other in our upcoming books. (And I am so honored you have shared your story with me and are in the book too Ally!!) She owns and operates these super yummy ice cream shops in Eugene Oregon, where she serves grass fed ice creams, dairy free vegan ice creams, paleo waffles, homemade bone broth soups, anyhow my favorite place to eat in Eugene. She makes the best grain free waffles EVER, and can't wait to include that recipe in the book!! When I go there I get a grain free waffle with a big scoop of her date dream dairy/refined-sugar-free ice cream on top,so yum!! She also avoids starchy foods and has a form of arthritis.

Anyhow, check out her site here

Excerpt from Megan's blog: "My most exciting mark of progress thus far is that my mild, remaining Interstitial Cystitis symptoms (a bladder and urethra disease that is incurable for most) are completely gone. The disease had improved considerably three years ago, after first going on the GAPS Diet. But in getting back on the Intro. Diet, I am now free completely of all symptoms, which is a huge indicator that my gut has sealed up considerably more than it was able to on the Full GAPS Diet. Interstitial Cystitis is basically just Leaky Gut extended down your alimentary canal. So healing in the bladder and urethra indicate healing in the whole gut!"

Edited by bettyrawker (05/31/14 06:26 AM)
I'm now a KICK AS (and Kick IBD) success story!! After going low starch Paleo to heal my gut, I can now eat nearly all starches, grains & foods without inflammation, flare-ups, or pain. I used a modified SCD diet approach (minus dairy! plus cacao ♥). Cheers to healing & thriving again! I blog at

#503789 - 05/31/14 04:33 PM Re: Interstitial Cystitis? [Re: Grumpyally]
samzee Offline

Registered: 02/06/04
Posts: 854
Loc: Northern Manitoba/Huntsville, ...
Hi All,

I have been diagnosed with this over a year and a half ago. I go into the hospital when I am home in Ontario and have special medication inserted into my bladder via catheter. It is no fun but it works great.

I also stay away from caffeine as much as possible.


Undiagnosed Chronic Fatigue

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