Get Interstitial cystitis recognized ! We need help.
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What is Interstitial Cystitis (IC)?
Interstitial Cystitis (IC) is a chronic bladder condition resulting in recurring discomfort or pain in the bladder or surrounding pelvic region. People with IC usually have inflamed or irritated bladder walls which can cause scarring and stiffening of the bladder.
The purpose of this petiton is to promote public awareness and partnership, provide interstitial cystitis (IC) education for the general public and for health care providers, and develop and enhance communication channels to allow for improved interaction and information sharing among those with IC, advocates for persons with IC and their families, those who provide care and services for persons with IC, researchers, and public health scientists
Suicide is the grimmest possible outcome associated with depression, and chronic pain patients endorse greater suicidal ideation (SI) and attempt suicide at a four-fold higher risk than the general population.4 While chronic pain conditions are in themselves not considered life-threatening, SI is an indicator for suicide attempts. Indeed, patients with pain report greater SI,5 attempts,6 and completions.6,7 Only one study has reported a prevalence of SI among patients with IC/BPS at 85% Alarmingly, 90% of unplanned and 60% of planned first suicide attempts occur within one year of the onset of SI,10 tertiary care patients show greater SI than primary care cases with abdominal-pelvic pathology,11 and IC/BPS patients report more depression than controls.12 As well, catastrophizing is a predictor of SI.
Depression and catastrophizing predict suicidal ideation in tertiary care patients with interstitial cystitis/bladder pain syndrome
THIS IS IMPACTING PEOPLE AROUND THE WORLD
Taken from a patient diagnosed with IC
⚠️⚠️THIS IS THE LIFE OF SOMEONE WHO HAS INTERSTITIAL CYSTITIS WITH HUNNER ULCERS⚠️⚠️
This post is not pretty. This post is not sugar coated. This post is scary, this post is raw, this post is real. That's what IC is, it's scary, raw and real. That's also what life is at times.
So what does it feel like to have IC if you may ask??????????? Well I’ll tell you the straight up truth like or not it’s the life many people live with & it’s something that many people still don’t under or are educated at all about.
It hurts, it hurts like effin hell. Imagine someone taking a tub of battery acid and throwing it over your bladder when you least expect it, that's how it feels. When you have IC there can be so much pressure weighing on your bladder that it feels you are going to throw up and now and then, you do.
IC can feel like someone is taking a knife or a hot poker and stabbing you in your genitals over and over and over again. Some other days it may feel like a million pins are stabbing your genitals. Don't forget about the electric shock type nerve pain that can come with IC. Sometimes you may jump out of your chair or make a noise as that painful, electric pulse sears through your genitals, pernieum, spine and bladder.
Sometimes IC can make you feel like your pee or your genitals are truly on fire. There are very few ways to put out this fire. Medicines, creams, gels etc. Sometimes they work, sometimes they don't. IC can make it hard to sit for a long period of time because sitting causes pressure on the pelvic and bladder region making symptoms worsen.
If you have IC sometimes you will get the overwhelming urge that you have to pee maybe one, two or three times an hour (or more for some). You will stop whatever you are doing and RUN to the bathroom. If you ignore this urge b/c there is no bathroom available you will be in intense pain. Once you get to the bathroom you sit there miserable. Even though your body is saying that you MUST go, sometimes retention gets in the way and it can take ten minutes for the urine to come out. Finally, you have relief (maybe a lot of urine came out, maybe only a few drops) but not for long as you may be doing this same activity again in an hour if not sooner.
This illness can make you itch and have spasms in places you never imagined. These spasms can make it hard to walk from one room to another. Concentrating as your bladder spasms can be near impossible at times.
IC an make you fatigued all the time. Living in pain is hard. Living in pain can make getting up or taking a shower a challenge. Chronic pain wears the body down. You may see many people with IC doing normal things: shopping, working, driving, dining out. It doesn't mean they don't hurt. When an illness has no cure, you do what you have to do and smile to mask the pain.
Having IC can lead to depression and anxiety. IC can cause you to need more time to rest and it can prevent you from being able to participate in certain activities. Friends and family may not understand. The lack of understanding can make you feel isolated leading to more depression and anxiety, it's a vicious cycle. Also, not knowing where bathrooms are when you leave the house can be a big trigger of IC anxiety.
These are the main symptoms, there can be many others. This disease is ugly. This illness is a monster. This illness wants to dominate and win, but you must refuse to let it win.
This post was not pretty. This post was not sugar coated. If you didn't like it b/c you thought it was too blunt, too honest or too gross then maybe you can't handle life. Not all parts of life are rainbows and sunshine.
IC hurts. IC is depressing. IC is not pretty, but IC is real.
We have lost many of our IC sisters and Brothers from suicide.
Please help us get this debilitating disease recognized and help us stop being turned away from disability due to on the outside '' we are normal and we are seeking attention "
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