My bladder

Twenty three years of a UTI like disease.

American Urological Association

1000 Corporate Boulevard
Linthicum, MD 21090
Phone: 410-689-3700 
Toll-Free: 1-800-828-7866
Fax: 410-689-3800 
Email: aua@AUAnet.org

www.change.org/p/doctors-proper-medical-care

 does Interstitial Cystitis (IC) feel like? A million paper cuts with lemon juice and salt poured on top. A dry catheter insert. A popping rubber band. A bowling ball on your bladder. Acid on open wounds. The intense need to pee as if you've held it for a day; every few minutes. Burning acid flowing out as you urinate. Sore stomach muscles. ALL. THE. TIME. Fear of going anywhere unfamiliar because you dont know where or how easily accessible a bathroom is. BEING DENIED PAIN RELIEF MEASURES because doctors dont believe how much IC hurts. Going to doctors who dont believe it exists. Going to doctors who won't treat it. Going to doctors who know nothing about it. Being given conflicting information and misinformation from every health care provider you see.

 Being told repeatedly by general physicians to see a psychiatrist because they dont believe in IC. Being ignored when you try to explain how much you hurt. How tired you are from never fully sleeping. You hurt even in your sleep. Its a constant tormentor. One who never leaves. 

Wetting the bed? Yeah that is a shitty reality too. 

That is my constant reality.The constant reality of hundreds of thousands of women, men and children. We hurt. We exist. We deserve proper care. A. Pain relievers HAVE to be made available to EVERY (IC) patient. B. Any procedure must be performed with at minimum a local anesthetic. C. STOP the abuse of (IC) patients at the hands of ignorant or jaded doctors. Follow your Hippocratic oath and stop hurting us by denying pain management. F. Listen to your patient. If we say we pee 60-100-150x a day, its because we DO!!!

Want a chance to be heard? Bombard the AUA

Bombard these jerks with emails. Phone calls. Fax them. Tag them on twitter and facebook. Let them know they are failing millions of people. Let them know how barbaric they are. 

American Urological Association

1000 Corporate Boulevard
Linthicum, MD 21090
Phone: 410-689-3700 
Toll-Free: 1-800-828-7866
Fax: 410-689-3800 
Email: aua@AUAnet.org

Financial stress

It is no mystery, that this disease places one under an undue amount of financial stress. Especially for we who can not work. If you are lucky you have a,spouse who does not mind being the financial supporter. Even, then, the cost of meds, supplements, dietary inhibitions is a great toll. It sucks to be broken and broke. Especially the resentment given to you

Negativity

I am in a forum that is about treating IC with natural remedies and diet. It says healing but those who are "healed" generally adhere to a bland diet. If they consume anything off their normal regime they are back to square one. Ive adhered strictly to the same diet, with little relief. Someone new got upset that so many people say what does not work.

I feel like people NEED to know that some people just will not get relief by ANY METHOD. I feel that it is not negative but it is reality. Those who do get better seem to have extremely mild cases and I sometimes question if it was truly IC for many. Thhose who have distinct causation such as lyme and treat, do recover. However that leaves the rest of us with IC that does not go away.

If we do not speak up and let others know that, diet, pelvic floor therapy, supplements et cetera arent working, then we are left wondering what we are doing wrong. The answer is nothing. We just do not have a fixable cause. Sure we should try to provide relief to our bladders as much as possible but that doesn't mean our problem goes away.

The IC diet is not one size fits all. What hurts one may be fine for another.  The diet is simply a BANDAID.

Some new studies show that classic Ic with Hunners have a different genetic marker and bladder biome. So maybe in the future people may not suffer for decades.

It is okay to say No I am not okay. It is okay to say nothings really helping. Its okay to say your bladder sucks.

Unheard voices.

John Hopkins did not go well. Back to almost square one. At least my new pcm is prompt with referrals. John Hopkins wants me to go to a Specialist in Philadelphia before they will do a cystectomy. Very frustrated as this was scheduled as a PreOp and now the doctor is hesitating to even consider it, even though she acknowledges that there is literally nothing left for me. I hate having no control or choice over my body. I know I should be glad that she wants me to get another opinion, but she is my 5th specialty Uro in 26 months and I have had ZERO improvements. At some point the patients voice should count.
Seriously. They will not give us pain meds but they won't take away the misery organ. There is something ( many things) wrong with healthcare. I really want to go stand on the Congressional floor, name off every doctor who is complicit in allowing the Government to dictate treatment options and say Fuck You you prick bastards. If I could run a razor blade up every crotch there and dump lemon juice and hot sauce on said cuts, I would. Maybe then they would understand how bad this really hurts.

Ignorance and being ignored

Interstitial Cystitis is ignored by the medical community to a very large degree. Even mainstream medical publucations minimize it. It is so frustrating to see it, being so broadly misrepresented. It HURTS. Pain, severe pain is NEVER-ENDING.

 Yet even Mayo, Merck and CDC minimize the reality of the suffering we go through. I suppose having an unexplainable disease with no clear pathogenesis is easy to dismiss.

I bombard news outlets, the President, celebrities with this blog, in hopes that someone  somewhere takes the time to listen. Takes the time to care. Takes the time to say, hey this disease is causing severe suffering.

It is causing poverty, it is causing suicides.

It is not something a sufferer can ignore.

Do we not deserve compassion?