Symptoms of Interstitial Cystitis and Chronic Pain

Interstitial Cystitis and Chronic Pain to me is one of the ugliest words that you wont find in the dictionary, yet it rules every minute and every aspect of my life! I need to explain exactly what IC is, other than just evil. The Dr's (not that long ago) didn't know what it was, women and men, even children. Since the beginning of time suffered, with all the same symptoms and complaints but most times tests, come back negative, so they had to start to explore more. I experience myself that a lot of people in the medical profession still have never heard of it, especially ER Dr's they here cystitis and think oh OK, no big deal. However you put those two words together and it becomes a very big deal. I have been fighting this for going on 25 years. Dr after Dr, specialist after specialist, state after state, i could go on and on, Oh wait I am. I have had so many blood tests, cat scans, x-rays, sonograms, exploratories, We find it amazing that I dont glow in the dark;). Most everything coming back negative. Let me first just share something I found proposed by the American Pain Foundation years ago that has greatly helped me in my fight, And trust me it is a fight for yourself, your body, and your peace of mind!

• As a Person With Pain, You Have:

• The right to have your report of pain taken seriously and to be treated with dignity and respect by doctor's, nurses, pharmacists, and other health care professionals.

• The right to have your pain thoroughly assessed and promptly treated.

• The right to be informed by your doctor about what may be causing your pain, possible treatments, and the benefits, risks, and costs of each.

• The right to participate actively in decisions about how to manage your pain.

• The right to have your pain reassessed regularly and your treatment adjusted if your pain has not been eased.

• The right to be referred to a pain specialist if your pain persists.

• The right to get clear and prompt answers to your questions, take time to make decisions and, refuse a particular type of treatment if you choose.

Although not always required by law, these are the rights you should expect, and if necessary, demand for your pain care.

A little something about pain, that may help you. Acute pain for example: is a broken arm. Chronic pain for example: IC and Fibromyalgia, that never goes away. You can dull it some with medicines but you will never be pain free. There is no cure! That's the toughest pill to swallow! Its very hard sometimes when the pain is at its worst to think of the future, years from now and it will be the same, its very hard to be optimistic some days you think I just cant go on. But we do and we will! We are Survivors and that's also, where that wonderful saying came from I guess. You know the one: One day at a time!! OK back to symptoms! I have so many experiences and things to say about IC and pain that I could fill a book, but I do go off on rants from time to time! Lets get technical now. The abbreviation for Interstitial Cystitis is IC. Its much quicker to write and easier to say:) it is a chronic inflammatory condition of the bladder wall. Where it comes from no one knows and there is no rhyme or reason why people get it, and there are no uniformly effective treatments for it. Every one's treatments are different. What works for one perfectly may not work at all for the other. It's a very tricky condition. So most times you just have to try them all until you find something that may help. Symptoms are like an acute urinary tract infection, and include pelvic pain, urinary urgency and frequency. I explain it as the worst bladder infection you've ever had, every day of your life.But urine tests are always negative and and you don't get better with antibiotics. About one million people in the US suffer from IC. That numbers probably not right because most people that have it are misdiagnosed or aren't diagnosed at all. Like I said before its very tricky, you have to have a close and trusting bond with your urologist. If you don't, find another one. Keep searchinguntil you do. It is all a very long process, most times. They say the amount of people that have IC are similar to Parkinson's disease or type1 diabetes, yet very few in the medical profession are aware of the condition. its often associated with other conditions like I mentioned before to vulvodynia, IBS and fibromyalgia. It often takes up to 7 years to get an accurate diagnosis. Also patientsthat have IC score worse on quality of life measures than patients with end stage kidney disease on dialysis. Without the right medications you'll experience severe pelvic pain and feel the need to urinate as often as every 10 to 15 minutes day and night. Its exhausting and that doesn't give a person much of a good nights rest. Lots of people are housebound, you cant even run to the corner store if they don't have a public bathroom or go to your child's play without trying to crawl out thru those aisles every 10 minutes or take them to the park . Its very embarrassing. Because chronic IC pain differs from normal pain, IC patients do not often get appropriate treatment. Hopefully this gives someone out there some help with how to deal with this, like I do;) Writing about it is helping me so much.