What is it: Interstitial cystitis is a pelvic pain condition with an unknown etiology. Patients typically experience “an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder” that lasts longer than six weeks in the absence of infection or other identifiable causes. Some patients have large, bleeding ulcers in their bladders, known as “Hunner’s Ulcers.” Others may have more modest bladder wall irritation and inflammation. Some have no bladder wall damage yet still have severe bladder symptoms. IC patients often struggle with coexisting medical conditions such as pelvic floor dysfunction, vulvodynia, prostatodynia, irritable bowel syndrome, anxiety disorder and others.
Tali Keteri's -It burns when I pee
Just took it upon myself to leave many of the Facebook IC groups…until the drama can cease and people can learn to do a bit of research on their own condition I’m tapping out. The amount of stress the people in our community causes other chronic pain patients is horrendous. When I first got involved all those years ago it was never like this…every once in a while a few people would get a bit out of ha…
nd but where it’s at now is f’in horrid. I want no part. I still plan on blogging about important subject matters and expressing my opinions about where we’re at in the forward movement of understanding these conditions but I am no longer playing the “he said she said”…or “you said that you got better doing this game and I didn’t so you’re a liar” game. It’s old. I’m tired. It’s beyond ridiculous and unless people are willing to learn that these conditons affect everyone differently and someone else not having the same symptoms as you does not mean that they’re making it up, I’m out. Meh. There’s my morning rant. Tis all about that. I shall move on to the next momentarily.
(Source: facebook.com)
“Love this line… Veterinarians know about ic but many urologists don’t. Taliban..your voice in the ic movement is fabulous. Thanks for making us think yet again.”
(Source: icramblings.com)
IC awareness sheet
IC Fact Sheet
July 10, 2012 | 0 comments
R. I. P Work ethic
I know I speak of no secret when I say that the health care system fails many patients looking to it for assistance on a daily basis. It can be as something as little as a busted lip, broken foot, or a terrible cough, or it can be something as serious as chest pains, chronic pain conditions, or cancer. I have found in my 20+ years of spending time in numerous health care venues that it typically doesn’t matter what ailment you are there for because the amount of care you get is based completely on who you are, who you know, which doctor actually bothered to learn about total body care even if they were ”just going to be a podiatrist”, and how good you are at playing the “I deserve to be your patient and be treated as one” game which I’m pretty sure that all CPP patients know that if you can’t play that game you will not be seen or taken seriously. It’s horrible. Why should we have know the right script and red flag symptom list in order to talk to a doctor and get some tests run? If we went in and said “oh, my stomach hurts really really bad in the lower right quadrant but I do have IC” they’re either going to chalk it up to an IC flare or tell us we’re there for meds as opposed to looking to make sure our appendix isn’t going to explode or that our ovary isn’t trying to crawl out of our belly button. It’s freakin’ ridiculous. So instead you learn the game…and you make sure you play it well…otherwise you get looked at like a pill head or someone who can’t manage their IC flares…and that’s if they even can admit that IC exists.
(Source: icramblings.com)
A hiatus well deserved if I may say so myself…and I just so happen to say so…myself.
I have always been a pretty humble individual. Never one for rubbing shit in people’s faces or trapsing around flaunting shiny new things all over the town..mostly because I really don’t like to make people feel like shit but also because I never really had too much to rub in people’s faces in the first place. The way I always looked at it is that someone is always better at something that someone else…and someone else is always worse at something than the next person. The truth is, we are all good at our own things and we all suck at our own things. It’s a matter of how we react to each person’s differences that make us the king of douchbagastan or a generally understanding person. It can really go either way. I always chose to not run around screaming about the things I was good at….unless it was talking or any other form of word vomit that comes out of my face. That I will claim and run around doing… Always. Clearly….Have you met me?
I can’t help it.
(Source: icramblings.com)
The Incidence of Urological Symptoms in Ketamine Users
(05/11) Have you used, or are you using, ketamine?? Peeing blood? Can’t sleep through the night without running to the restroom? Ketamine has a powerful, damaging effect on the bladder and kidneys. The purpose of this survey is to gather some baseline data about ketamine use and the incidence and/or awareness of bladder symptoms that may develop with ketamine use. Please help us learn more about this! No personal identifying information is required or will be collected other than your country and/or region of origin.
Ketamine Use and IC - Is there a connection?
Ketamine is a recreational drug that is commonly used at parties and raves. Used throughout the world, recent research has demonstrated that ketamine can cause severe bladder ulceration that results in symptoms similar to IC. We’re interested in seeing just how many IC patients may have used ketamine in their past. No personal information will be collected in this survey, nor will an email address be collected.
Medical Marijuana and IC
Medical marijuana is a difficult, politically sensitive subject. While research studies have shown that medical marijuana can be effective in reducing neuropathic pain and/or muscle tension disorders, it is still illegal for use in many states. Our goal is to collect some data that can help determine if medical marijuana is helpful or hurtful in the management of pelvic pain and IC symptoms.
Your answers are entirely anonymous. We will not ask for any identifying information from you. We simply want to know what your experience is. We hope that the preliminary data gathered in this survey may be used to support a larger funded study into the use of medical marijuana for IC or pelvic pain symptoms.
Your answers are entirely anonymous. We will not ask for any identifying information from you. We simply want to know what your experience is. We hope that the preliminary data gathered in this survey may be used to support a larger funded study into the use of medical marijuana for IC or pelvic pain symptoms.
Weight Loss Programs and IC
(Summer 2011) We’re curious! With so many prepackaged foods prepared for weight loss programs, is there a program (or programs) which are more bladder friendly than others? We’re asking for your personal experience with various national weight loss programs, including:
- Atkins
- Jenny Craig
- Medi-Fast
- Nutrisystem
- SlimFast
- South Beach
- The Zone
- Weight Watchers
Interstitial Cystitis/Painful Bladder Syndrome and Sexual Function
Spring 2012) Researchers Stan Zaslau and Dale Riggs at West Virginia University are continuing their research into the impact of IC on relationships and sexual function.
(Source: ic-network.com)
New IC Diet guidelines for 2012
How Do Foods Irritate The Bladder? It is not unusual for a healthy bladder to become irritated by urine, such as in patients going through chemotherapy or with patients abusing ketamine. But, when you have an injured or wounded bladder, urine can reach deeper into the bladder wall where it can directly stimulate nerves, stimulate mast cells to release histamine and create profound irritation.
-IC-Network
(Source: ic-network.com)
A follow up interview for the ladies from MTV True Life: I can't have sex.
TALI
What are you up to now?
I have been super busy working on fundraising and awareness projects for chronic pelvic pain conditions. I also recently started a new job and have an opportunity to help a lot of people who struggle with the stress from painful sex and other pelvic problems.
Are you still experiencing any vaginal pain?
It comes and goes as it pleases. Compared to what it used to be, there’s been an 80 percent improvement. I am able to manage a flare-up much better now than I did before and sex is no longer a dreaded ordeal, which is great.
Recommended book list for Chronic Pelvic Pain patients
Ending Female Pain by Isa Herrera
Secret Suffering by Susan Bilheimer and Robert J Echenberg
To Wake in Tears
Along the Healing Path
Awakening Through the Tears: all by Catherine M Simone.
