Wellness

[RetRN]

Does anyone have this or know someone who does? How do you deal with the pain?

[AuntG]

No, I not familiar with it but I hope you get some responses. 

[GabbyAnn]

A lady I know once suffered from this.  Her Dr prescriped Hydroxyzine 25mg at bed time to help.

She still has trouble with UTIs.  She said it helped her to an extent..

Maybe you could ask your Dr if it would work for you.  I certainly hope something works for you.  I know my dear friend was in terrible pain with it.

[Foxxee]

My sister has it.  Let me say she had a terrible time getting it diagnosed.  Probably, 12 doctors...you know..."It's all in your head."  Finally, one doctor sent her to a Gynecology Urologist where she received a diagnosis and treatment.

She was prescribed medication, but also the doctor injected this same medication into her bladder once weekly for 6 weeks to escalate treatment.  Sorry, I don't remember what was prescribed.

Her symptoms were the same as having a bladder infection, but no white cells were found in her urine.  

She learned it was some foods that were irritating her bladder.  She was given a list not to eat.  She's doing well.  I haven't asked her if she's still taking the medication or if staying away from those foods solved the problem.  

Maybe Azo would help with the pain.  

[GenXmuse]

I used Amitriptyline when I had this after a difficult childbirth. It can be quite debilitating. I also did physical therapy to help relax the pelvic floor. They have therapists who specialize in women's health and found it helpful. 
It can be difficult to treat and requires a comprehensive work but it did get better over time.  

[Hearts4Me]

Yes, I've had IC since the early 1990's. It took me 2 years (no joke) to get diagnosed, and I went to many physicians including specialists at the University of Pittsburgh who were researching bladder issues.

I still have not gotten better.  Many meds, bladder instillations of some which helped for a few weeks, then back to misery.

I am up at least 4 times nightly....and that's no joke.  Some nights I am up hourly.  My husband moved down the hall to another bedroom years ago due to this.  It's a true nightmare.

[piperbay]

@RetRN   I recall reading about Desert Harvest Aloe Vera for I.C.  I think it's worth looking into. 

[sydsgma1]

I had interstitial cystitis for several years. Unfortunately, mine was so severe that my docs at the Mayo Clinic recommended the very drastic step of removal of my bladder. 

I believe there are some new meds that can help with symptoms., I found an anti inflammatory diet also helped.

I fully understand your pain.,

[Lucky Duck]

I hope I"m not overstepping the line but did they actually remove your bladder?  How are you doing now?  Do you have a pouch?

[Toppers3]

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@RetRN wrote:

Does anyone have this or know someone who does? How do you deal with the pain?

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I'm so sorry for anyone who has to live with this condition.

It's miserable.

Luckily I was able to be diagnosed by a Urologist many years ago when I first started to have problems.

Medication that I was taking for other medical conditions happened to help, inadvertently.

I also did bladder training exercises, where you deliberately hold out on going to the bathroom for as long as possible.

You gradually add time on to the amount of time that you can hold out on, going to the bathroom.

Your doctor's office can guide you with doing this.

I was running to the bathroom like every 20 minutes, so you start adding time on to that to stretch your time out that you can wait.

You're trying to help your bladder hold more fluid.

You also keep track of foods and beverages that can be irritating to your bladder, and try to avoid those things that make things worse for you.

I can no longer drink tea, and I have to watch products with caffeine in them, along with certain spicy dishes of foods.

I became allergic to one of the meds. used in treating it, but the Urlogist helping me now with kidney stones has put me on a different medication which helps.

He says my bladder now is not inflamed like it was, so he's calling it an "overactive bladder," due to the urgency and frequency and urge incontinence symptoms that I currently still have.