Interstitial cystitis

Status
Not open for further replies.

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Any one else have this? Any tips for medications that help the terrible pain I get?

I know all about the IC diet reducing oxolates and acidic foods and drinking bicarbonate of soda...none of these are effective for me.

The burning throbbing pain from the waist down, inside and out is the worst part.

Any one else care to share their experiences.
 

brett88

Member
Joined
Aug 18, 2016
Messages
13
Reason
DX FIBRO
Diagnosis
7/2009
Country
US
State
PA
I just got diagnosed with this about a year ago after some horrible tests.

I use Uribel twice a day and valium suppositories for medications.

I have had to cut out pizza, most all tomatoes, soy, and chocolate, for starters. I rarely have these foods anymore. I still wake up with stomach pains and have a lot pelvic pain. I have urinary frequency and different levels of burning pain. I see a pelvic floor therapist twice a month (which isn't quite sexual assault but you get the picture, but the physical therapy does help somewhat)
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
Florida
Willow have tried serrapeptase and colladal silver? I added the silve back months ago. I have not been diagnosed with interstitial cysts but back when all was so bad I had all the symptoms. I'm just learning about serrapeptase so I'll probably order some when things settle down. It sounds promising.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Hello Eyesup...thank you for that...i have never heard of serrapeptase ...i will look it up and the colladal silver...am lol you will know why...I haven't seen you on here for ages! .x
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,490
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
I had a drug that stopped me from wanting to pee,Oxybutynin. It worked wonders .
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Did it help pain Forgemenot?
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Willow, I have this condition. The trick is to stay away from high acid foods and things like cheese and chocolate can set it off. There are many books on the subject and I think there is some older posts here about the condition. I just watch what I eat and take Excedrin for pain. I will write more about this later, as I have had it over over twenty years. Drinking lots of water is good as well.

It is having inflamation in the inner lining of the bladder wall without having an infection. Very painful.
 

EmmaLVee

Active member
Joined
Apr 4, 2016
Messages
42
Reason
DX FIBRO
Diagnosis
08/2015
Country
US
State
PA
Sorry to hear about anyone suffering with this! On top of Fibro, it SUCKS.

Have you tried Elmiron? It's at least helped the frequency for me, which was constant.

I have also been referred to a pelvic floor therapist, but haven't tried it - am a little afraid of it.
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,490
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Yes willow ,it stops the bladder going into spasm x
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
My doctor told me Elmiron can often make your hair fall out ....it's made me very hesitant.....I know pain is worse by a long way but for some reason vanity...the thought of looking even less like me with a half bald head LOL makes me want to hold off on a drug so powerful it can do that and other unknown things to my body.

Forgive me girls and boys if you see this as shallow.
 

EmmaLVee

Active member
Joined
Apr 4, 2016
Messages
42
Reason
DX FIBRO
Diagnosis
08/2015
Country
US
State
PA
Not shallow at all, Willow - we are more than allowed to pick and choose what we feel is worth it when it comes to medication!!!

I haven't personally experienced any harsh side effects from it, if that helps at all. And I hadn't heard of Oxybutynin before now, thanks for that Forgetmenot.

Has your doctor ever offered to do the "bladder distention" for you (after the initial one to diagnose the disease)? Having that done actually relieved me of some symptoms for around six months or so. It's not that long of a time, but it's something.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Thanks EmmaLVee
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,490
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
That was funny willow lol.do ask abut oxybutin
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Glad you had a chuckle forgetmenot....maybe you did forget your pain just for that moment!
 
Status
Not open for further replies.
Top