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.

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?

Pain control war

This war against us is weighing heavily.  I feel as if every Doctor, Politician or Government agency that inhibits or denies pain medication to chronic sufferers is complicit in their suicides. They ought to be sued for every death, that their lack of compassion creates.

People who want to get high arent just doing it off legal scripts. Street drugs will always prevail. Perhaps some discerment in prescribing is needed.

I laugh everytime I read some idiot commenting on how its doctors faults for being opiate pill mills. Dude I want that doctor.

 In my lifetime of experience, I have yet to meet a doctor who will prescribe actual pain meds for chronic pain. Shit I cant even get them to pour lidocaine into my bladder.

I realize my situation is not unique. I almost dread logging into an IC forum these days. Why? Because people are giving up after being cold turkeyed from meds that were giving them some relief.

It is SICKENING that we are being BETRAYED by the medical field.

After an encounter with a doctor who pushed Mybetriq at me and got angry when it didnt work,  I researched her. Only to find out she was getting a kickback for that med. $20,000 to prescribe it.

Another doctor who pushed Lyrica, knowing that Gabapentin made me ill, has gotten $37,000.

When the Lyrica made me sick he tried to push Celebrex, which guess what he got $42,000 to push. A med I had already a severe reaction too. He did not bother to read how it caused me to suffer oral and vaginal blistering.

That is not practicing medicine, that is being a drug vendor.

I am absolutely fed up with the malpractice and abuse.

Frustration.

 Here it is mid October of 2017. I have had 2 botox procedures. A failed pudenal block. I have had right and left side medial branch blocks.

I reduced my diet to pumpkin only for weeks to try and alkalize my body. My urine ph is always acidic.

 I have been through 6 urologists and 3 "pain" management docs. One who thought lyrica would be good. NO. Just no. What a horrible drug, then he tried to put me back on Elmiron and Elavil. Fuck off dude, or go read my extensive record.

The pain manager he referred me to only works on the spine and only does nerve block injections. No help for a bladder there.

  I had to fire my primary for her refusal to refer me to a better urologist clinic. I finally got into John Hopkins pelvic pain management. The pudenal block was my last ditch effort.

Since NO doctor is willing to truly assist with pain beyond injections, I have decided I will pursue bladder removal. I can not imagine feeling any worse than I currently do. It has been weeks since I have had any decent sleep. I can not do this life anymore.

I am absolutely fed up with the corrupt medical system. DEA interference. CDC stupidity.

The only reason this country is in an opiod crisis is because they refuse to prescribe meds to people who actually need them.

I have contacted state lawmakers, federal lawmakers, even the POTUS. You know what you get in return? Some pandering "opiates are only a mask" response.

You know what? Unless you have a bacterial infection, ALL meds are a fucking mask. Insulin does not cure diabetes. Prozac does not cure depression. Adderal does not cure adhd. So for anyone who says opiates are mask in response to my pursuit, I say then trade me bladders. I will glady take yours and let you jaunt down this cursed path of misery.

I'd rather work than be sick

Some things I'll write here so that people know.
I am not lazy. I AM sick.
What takes a few minutes for you takes much longer for me.
I live with chronic pain and the need to keep a toilet close by.
I can not eat or drink whatever I want without severe consequences.
Any activity I do, do comes at a price of more pain and more peeing. ANY. ACTIVITY.
I'd MUCH RATHER be healthy and WORK FULLTIME and have a satisfying career, than be at appointments all the time that are just to try and make my life semi bearable.
Trust me WORK is better than constant PAINFUL PROCEDURES that I do to try to find a way to live in some sort of way that is not ALWAYS PAINFUL.
So I am sorry that I am broken. I've done everything I can to fix myself. I have fought insurance, doctors, family and friends who assume they know what I go through 24/7 365 days a year.
At some point enough is enough and unless you go through this then I dont expect you to really understand or care.
All I ask is that you not assume my days are easier than yours, that I would WANT to be sick rather than well.