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Interstitial Cystitis Community
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Avatar universal

Intersistial Cystitis

Hi,
I was diagnosed with having IC about 8 years ago. I fortunatly do not have any pain. Just a constant need to urinate and feeling of pressure and a full bladder. I have this constantly. Some days I urinate as much as every 10 minutes. I am sleep deprived because I am getting up at least 3 times an hour to use the bathroom. I have tryed medications, diet, etc...and have had no relief. This condition has been taking a toll on me and really starting to interfere with my daily life. I am a 34 yr old female with no other major health problems. I was looking to find out if there is anything at all I can do to get through this. Thank You
9 Responses
Avatar universal
Have you tried hydrodistention????????
Avatar universal
No, I have not. What is hydrodistention and does it seem to help?
Avatar universal
I also forgot to mention that whenever I have a flare up, I notice a foul odor. I do not have a uti, everything is normal.
Avatar universal
Sounds like me. I read a book called on the healing path by Catherine Simmone. There are some helpful things in there to try. I'm trying interstim therapy in March. Med have not worked for me except for low does amitriptlyne (anti depressant). It helps me sleep better because I wake up less often but then also have a problem waking up. Guess you take the good with the bad. Check out the book.
Avatar universal
Heparin infused into the bladder is helpful and calming to the bladder. A series of at least 6 weekly treatments is recommended.  Urine is aspirated from your bladder prior to infusement.  It is also recommended to hold the Heparin in the bladder for as close to 2 hours if you can.  (yes I thought it was going to be impossible and I practically cried when they told me this, but I found I have actually been able to do it!).

Also, I sometimes take a prescription anti histamine called Hydroxyzine HCL:
"Hydroxyzine is used primarily as an antihistamine for the treatment of itching, allergies, hyperalgesia, motion sickness-induced nausea, and insomnia, as well as notably for the treatment of mild anxiety.[3] Even though it is an effective sedative, hypnotic, analgesic, and tranquilizer, it shares almost none of the abuse, dependence, addiction, and toxicity potential of other drugs used for the same range of therapeutic reasons."

I am able to sleep through much of the night and it cuts my nightly urination down a lot.

Hope this helps!
Avatar universal
Thank you soo much for the responses and suggestions. I will try anything at this point. Such a difficult thing to live with. Had another flare up and was up the entire night. Take Care!
Avatar universal
I am having a horrible flare up. Bathroom trips every 5-10 minutes for the past week. I have a constant pressure and need to urinate, even when only a few drops come out (only to lay down and get back up again to go). I was not able to go into work today and don't know if I will make it back this week at all. I have a dr note explaining this condition but I feel that people are very ignorant and don't understand what I or other people that have this condition are going through. If only they could be in my shoes for a day.
Avatar universal
Are you feeling any better these days, and how are you doing with your job?  Maybe if you printed some stuff out on IC and handed it out to your "superiors" it may help.
Avatar universal
i also have no pain really just horrible need to urinate almost every five minutes at times. i urinate up to sixty times a day and more when i need to go to sleep. have you tried elmiron? i am getting ready to take it and am wondering if it even helps at all?
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