#painful bladder syndrome

[saentorine]

"I don’t mind paying to use public restrooms because the paid ones are cleaner!” Then you clearly do not experience the profound frequency that can make paying-per-pee an itemized travel expense akin to an extra meal in my food budget, nor the level of urgency that has prevented me from ever turning down a restroom opportunity when I need it, which is constantly. We are not the same.

[mental-mona]

Source

[disabilityhealth]

My bladder is just. The worst.

What do we need bladders for, anyway? I don’t need to drink liquid. It’s not worth it.

[boywithbear]

Back on my flag making shit.... Interstitial Cystitis flag since it's been a long time of me waiting to stumble on one and I've never found one!!! Based solely on the turquoise awareness ribbon (looks better than my other one with other meanings) !!!

[flag description: flag with 7 horizontal stripes. It is an entirely turquoise flag with the middle stripe being a light turquoise and the stripes going outward on each side progressing to a very dark turquoise. End of flag description.]

[busyasabbey]

So I've been struggling with what's called Painful Bladder Syndrome since March/April 2019. How I was diagnosed was I had a uti and two lots of antibiotics. Uti was gone but pain and symptoms were still there.

Tonight, I learned that there is a national support group here in NZ, a place in my city that helps with bladder stuff and a website that you can get a "I need the loo quickly" card (not that I think I'd ever need it, but good to have it just in case)

I really should have looked these things up much sooner, though I think I looked it up out of sheet curiosity, went down a bit of a rabbit hole, but all in all glad I did 😊

Hoping something helps with the pain!

[sickturnip]

[a-typical]

Interstitial cystitis/Painful bladder syndrome

Interstitial cystitis (IC) is also known as painful bladder syndrome and bladder pain syndrome. It is pain, pressure or discomfort experienced in the bladder, in the absence of any infection or other disease, that lasts more than three months. As well as pain, symptoms include feeling the need to urinate urgently or frequently, or both, and pain during sex.

Anyone can develop IC, but it’s more common in women. American studies have estimated that between 3 and 8 million women suffer from IC and 1 to 4 million men in the United States. Direct costs to the US economy have been estimated at $22 billion annually.38 There may be a genetic link, as people with a family history of IC are more likely to suffer from it.

IC isn’t the same as a urinary tract infection, but a previous infection may cause IC by damaging or irritating the bladder’s lining. Sadly, very little is understood about IC, and it’s difficult to get diagnosed as doctors still disagree about what it is and if it exists. However, researchers are studying whether it has an autoimmune element.

IC remains a controversial diagnosis not only among doctors but also among some patient groups. The patient advocacy group Live UTI Free, for example, claims the standard UTI test in use for almost 60 years misses up to 50 per cent of all infections; this would mean one in two women are at risk of being misdiagnosed, with significant numbers progressing from recurrent UTI to diagnoses of so-called untreatable conditions like IC. In other words, the advocacy group believes that some patients being diagnosed with IC have an infection that won’t be treated once this diagnosis is given. Some doctors in the US and UK agree; they claim to have found infections undetectable in generic tests among women with recurrent UTIs, and have developed effective treatment protocols for these people. However, there are few randomised controlled studies on effective treatments for either recurrent UTIs or IC.

Some bladder pain can be caused by dysfunction in the muscles of the pelvic floor, lower abdomen or back and may improve with physiotherapy. There’s one FDA-approved treatment for IC. A review of evidence for the most common treatments for IC found a majority had very little proof of efficacy. The NIH spent $9 million in 2014 on IC, working out at $1.13 per patient. The NHMRC funded no research into IC from 2013 to 2017.

Women with IC also commonly have irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, endometriosis, vulvodynia and allergies.

Pain and Prejudice — Gabrielle Jackson

[notanastronaut]

Everyone talking about how much they achieved this year but I'm ending it the same way I started, vomiting, in agony and concerned about my kidneys

[ghostzussy]

bladder is being mean again

[barelyfunctioning-amber]

Being disabled is exausting, and even more exausting if you're not fully diagnosed.

I just

...

Want to function more but I just can't.

-Amber

[thatsprettylane]

Fucked up that society conditions us to be ashamed of bladder and bowel problems. Like those are organs. Nobody is embarrassed if their kidneys don’t work right.

[tomatowielder]

is there anyone else out there with interstitial cystitis(/bladder pain syndrome)? feeling thoroughly fed up with it this week & it would be nice to connect with others out there even if it’s just finding some new people to follow

[mental-mona]

[exlibrisfangirl]

Post-Surgery Update (No. 4?)

Aaaaaand I am ONE MONTH post-op! 🎉

This past week has been the hardest yet. My body doesn't know which way is up (which makes doing anything but lying flat all the time reeeally interesting reeeally fast), and I feel like I'm secretly part of some cosmic being's science experiment.

All of that aside, I'm grateful that I'm slowly but surely continuing to regain nerve function... bit by stinging, prickling, burning, shocking, electrifying bit!

[chronicillnesscaneffoffplease]

Sometimes it feels like my body is failing me. It’s felt like it was failing me in 2020, when it wouldn’t stop bleeding, but now it feels like it’s failing me because of the fatigue and the pain and the throwing new issues and symptoms in my face every 6ish months. The bladder stuff is such a curve ball. And oh my god I have to do so much stuff to look after this trash body, like visits and tests and diagnostic surgery and pills and physio and rest and eating a certain way (which I’m finding really hard to do at the moment with my gastroparesis flaring) and exercising frequently and I still feel like absolute trash. It sucks to put so much effort into cajoling your body into functioning that it takes up significant amounts of your limited energy. Idk, I’m just angry and I wish it wasn’t like this. Or sad and wish it wasn’t like this.

[faethorn]

The sleep gods have deemed me unworthy of getting a single wink of sleep. Dear god I wish to hibernate