Dr Kristine Whitmore

MONURAL, has ASPERTAME.
Also your vaginal valium has gabapentin and baclofen, both of which are shitty.

Look if you are claiming to be the top specialist in the IC industry of patient shuffle, and you are going to preach diet hand me a list of garbage diet guidelines and the prescribe a med with a chemical that IC patients have extreme sensitivity too, why bother?

Why is it so hard to understand that my bladder does NOT WORK. You do not have a miracle cure and honestly in 25 years the IC specialists, seem dumber than the primary care doctors.

Let me tell you what IC patients CAN NOT EAT.

WHEAT
DAIRY
ICECREAM
CHEESE
SODA
TEA
COFFEE
BLUEBERRIES
APPLES
PEARS
BANNANAS
RICE
CORN
MARSHMALLOW ROOT( DIURETIC)
NUTS
AVOCADOS
ONIONS
POTATOES
CONDIMENTS
HIGH OXALATE GREENS
CRANBERRIES
OATS
STRAWBERRIES
GRAPES
POMEGRANATES
ANY SUGAR
ANY SWEETENER
VITAMINS ESPECIALLY B VITAMINS
CHERMOYA
DRAGONFRUIT
BROCCOLI
CABBAGE
CARROTS
EGGPLANT
TOMATOES
EGGS
WINE
BEER
LIQUOR
CANDY
CHOCOLATE
POPCORN
CEREAL
BEEF
PORK
CHICKEN
TURKEY
SHELLFISH
FISH
CITRUS FRUITS
FRUITS OF ANY KIND
PROCESSED FOODS
PINEAPPLE
PAPAYA
BEANS
HONEY
BUTTER
MARGARINE
OIL
CRACKERS
CHIPS
GUM
SUGARFREE ANYTHING
SUGAR ANYTHING
CAKE
BREAD
CORN TORTILLAS
PEPPERS
KOMBUCHA
KIMCHI
CINNAMON
Forget any fastfood
Forget packaged food

We can eat pumpkin but only plain; baked or steamed.
Raw Pumpkin seeds
Maybe lucky to eat mulberries in small quantity.
Yellow squash.
Chaote
Zuchinni squash
Acorn squash
Spaghetti squash
So yeah squashes.
So lets get real. Bladders being removed with a pouch not a neo bladder are a great option for us. Especially if you have suffered for 25 years.

My career is shot.
My sex life is nil.
My activity is interupted.
So quit the fucking games and play right. Either actively do something or find a different disease to attach yourself too.

John Hopkins Dr. BIVILACQUA

ARROGANCE AND LIES

I have been yoyoed by doctors for many years, the past 3 have been the absolute worst. I have seen specialists, who seem to completely not understand IC issues at all.

1. The complete lack of appropriate pain management. No guys injections are not going to cut it. Thanks for causing me worse pain and weight gain with that prednisone that I specifically said do not give me in an injection.

2. Not listening. It is like they say words but their words are basically a template of tired bullshit cliche. Fucking A. I have tried everything except narcotics. And you do not prescribe those.

3. I drive hours for appointments and nothing is done. Im lied too by multiple doctors. They do not listen to me. They prescribe meds that make me sick EVERY TIME I HAVE TRIED THEM.

4.I do not need a god damn psychiatrist nor do I need anti-depressants. Fuck you. It is a load of horseshit to do that to an IC patient. We are peeing blood and bladder lining. How the fuck is a session that gets interupted every 10 minutes for the toliet going to help me? Fuck the waste of time and money.

5. If you do not want me as a patient, then just fucking say it. Do not be that asshole who sends me to another asshole who also gives me a bullshit line. I am beginning to think you all got degrees from "asshole clown university."

6. I will get rid of my bladder. Either one of you pricks can do it or I will do it myself. So not, kidding, at all.

7. Stop treating myself and other IC patients like we are mental imbeciles. If one more doctor pats my back and says keep trying, I may just punch them. 

8. If you know I am driving 5 fucking hours too see you and you know you are only going to say sorry I wont help, then just do me a favor, tell me that shit on the phone. I dont have the money or energy to make trips that result in more stupidity from your end.

6. I dont want your fake empathy. I dont want your gaslighting, narcisstic, pedantic treatment either.

7. If you screw up fucking be honest.

Do not go quietly/, into the dark night; call and write the people who can help us!

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

Europe 

EAU Central Office PO Box 

PO Box 30016
NL-6803 AA Arnhem, The Netherlands 
T + 31(0)26 389 06 80

Canada

CUA Corporate Office
185 Dorval Avenue, Suite 401
Dorval, Quebec H9S 5J9
Tel: +1 514 395 0376
Fax: +1 514 395 1664

Irish Society of Urology 
c/o RCSI Conference & Events 
123 St Stephen's Green,
Dublin 2

Get in Touch:

Phone: +353 087 4045832
Fax: +353 021 4344907
Email: info@irishsocietyofurology.ie
Twitter: @ISU_Urology

Dying for relief: We NEED Opiates.

I know there are many more people who have chosen death because they are treated so piss poor by doctors. Perhaps not just IC/PBS, but many pain patients who just can not take this pain anymore. The humiliation of having doctors blatantly tell you they wont help you. The financial crisis this pain causes.
The quality of life issues.
The reality is that to our Doctors, CDC, WHO, DEA, FDA, and Federal government; we do not matter. We are a burden. A blight. Something better off dead than on meds. We are denied basic Constitutional rights and even more basic medical care. We need to push back and push hard. We DO matter. Let the world hear our about our pain. If you read this I ask you share the link anywhere you can. Tag Potus, flotus DEA CDC FDA and doctor organizations. The more we speak up the harder we will be to ignore.
Imagine if we all PUBLICLY demanded pain treatment? HOW long can they ignore us if we become a voice they can not hear over? Please join the fight for basic human rights and dignity in treatment.

Doug Hale Oct 2016
https://www.painnewsnetwork.org/stories/2016/12/22/chronic-pain-patient-abandoned-by-doctor-dies
Allison Kimbery June 2017
http://m.legacy.com/obituaries/denverpost/obituary.aspx?n=&pid=185902615&referrer=0&preview=True
Diane McLean March 7th 2002
http://barryyeoman.com/2003/06/not-just-a-bladder-infection/


http://tau.amegroups.com/article/view/8043/8838

Olivia Crowther June 24th 2008

https://www.google.com/amp/s/jeancalder.wordpress.com/2008/07/26/cystitis-can-destroy-lives/amp/


http://www.o-wm.com/content/interstitial-cystitis-recognizing-and-caring-wounded-bladder

http://causes-of-death.healthgrove.com/l/8166/Interstitial-cystitis-chronic

https://www.inspire.com/groups/interstitial-cystitis-association/discussion/suicide-and-ic/
cutting_down_on_opioids_has_made_life_miserable_for_chronic_pain_patients.html

Everything hurts

  In a flare so bad I wish I could cut my own bladder out. If I thought an ER would help Id go. If I lived in Amsterdam Id tell them I was an addict just to get pain relief. That should not be the way of medical care. There is ZERO reason we should be forced to endure this. Zero. I keep sharing this blog, in hopes someone somewhere has both the compassion and authority to treat this disease. To treat us like human beings who deserve care and compassion.

If I don't laugh I will cry.

*Have you tried cranberry juice?

* Eat alkaline.

* Pray for healing if you are not healed you must not be faithful enough. 

*Eat blueberries.

* Go to a doctor, surely they can prescribe you medicine.

* Why dont you just get pain meds? 

* Have you tried aloe?

*Just pretend you do not hurt.

* There is no way you pee that often.

*I'd just kill myself if I had that. 

* Aren't you over that now?

* Can't you get disability?

*Just wear a diaper.

* It can't be that bad. 

* Have you tried( insert any essential oil brand).

* Can't you just take an antibiotic?

* Get vicoden from your doctor.( They do not prescribe that much anymore people.)

*Are you sure it hurts that bad?

* There is no way your pain is always a 10."Nurse said that."

* Disability is for people who need it. ( Disability worker who also laughed at me while I was crying in pain."

* Your bladder is a normal size. ( a urologist) 

* Follow the IC diet( there is no specific diet) limit your fluids( doing that makws pee more acidic thereby worsening pain) suck on sugarfree candies for dry mouth.( UroGYN IC specialist, Artificial sweetners make it worse, she should at least KNOW that. 

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.