Is your doctor trustworthy?

This may seem like an odd question. However, amidst all the recent witch hunts over opiates another dark part of the Big Pharma underworld has come to light. That is, that pharmaceutical companies are paying your doctors to prescribe sponsored meds.

Seems shocking, I know. I have briefly discussed my disgust with a urogynocologist I was sent to and how horribly she treated me when neither of her big sponsored drugs helped my symptoms. However, she is but one crappy piece in a giant game.

http://www.iflscience.com/health-and-medicine/find-out-how-much-big-pharma-drug-companies-are-paying-your-doctor/

Above is a link to input your doctors name. Now some of the payments are mundane. A lunch or trinket like pens and magnets, but some are much more substantial.

Look for large sums given for endorsement speeches. That is where you begin to see the betrayal of your doctors integrity. Personally I can not trust a doctors judgement in treatment, if they are being "paid" by a specific pharmaceutical to push certain meds.

The medical community has declined greatly over the past 2 decades even as medical knowledge has increased.

I recently read an article about patient satisfaction should not factor into service rendered. I think they forget, they would not have jobs without patients.

I was particularly shocked by nurses comments on the post. Especially many of them making fun of patients and the pain levels we have. There are extremely effective pain meds that patients are denied because of government "DEA" interference.

I do not think asking for pain relief in a hospital setting is too much to ask. In fact perhaps the nurses and doctors should listen more to their patients instead of relying on chart numbers.

The decline of care and treatment is dismal.
We are treated like guinea pigs, worse even because we do not have animal rights activists proclaiming against our treatment.
In 2016 at least 111 deaths are related to Lyrica. The big opiate replacement drug.
450 deaths a year are ascribed to Tylenol. 50,000 acetominophen overdoses happen each year. Tylenol is toxic to your liver. Yet, it gets basically a safe pass. "Acetaminophen is the nation's leading cause of acute liver failure, according to data from an ongoing study funded by the National Institutes for Health. Analysis of national mortality files shows about 450 deaths occur each year from acetaminophen-associated overdoses; 100 of these are unintentional." Asch.org

Most people will simply say "any drug poses potential harm." This is true. However, the fact that certain death or injury causing drugs are still widely distributed without vivid warnings is unexcusable.

Especially when the same people advising use of otc or prescription drugs other than opiates are not forthcoming with the risk. In fact when exhibiting symptoms of Lyrica toxicity I was advised to continue usage. I quit taking it. It did not help my IC pain and in fact made it hurt worse.

We must demand our voice be heard. Heard by medical professionals. Heard by lawmakers. Heard by others suffering this horrific disease.

Another cystoscopy.

)

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.