Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
Hi everyone,
You all have been the best resource for me about IC and I would be in a lot more pain and lost if it wasn't for you. We have a priceless resource --- each other. So, I would like to put some things out there and see if we can find a link to the precursors of IC and related problems. I am going to put down some of my issues and habits growing up and if you have/had any of these things in your life, please let us know which ones and also feel free to add your own. Let's see if we can find some answers.
1) Endometriosis --- about a year before I was diagnosed with IC I was diagnosed with endometriosis.
2) IBS --- I have had IBS since I was a very young child; IBS-C (constipation).
3) Hypo-thyroidism --- diagnosed at 16, my mom has it too.
4) Anorexia --- I was anorexic at 14 for nearly a year.
5) Bulimia --- I was bulimic for over 6 years (but I have not been for almost 3 years).
6) GERD --- was diagnosed at 15.
7) Water retention problems --- this started when I was 15 and I take Novo-Spirozine for it.
8) Cocaine addiction --- I had a short-term cocaine addiction during the worst days of my eating disorder as a teenager.
9) Horrible periods --- getting my period at 9 years old, I took anaprox (naproxen sodium) for my periods for over 10 years every single month.
10) Dieting --- extreme forms of diets like juice diets and Dr. Bernstein's (which is SO unhealthy goodness what was I thinking?).
11) Acidic diet --- I had a very acidic diet since I was a little kid --- pickles, pickled beets, seasoned rice vinegar, balsamic vinegar, tons of tomatoes, lemons, limes, salsa, grapefruit almost every day, etc.
12) Caffein addict --- Drank a ridiculous amount of coffee from high school until IC diagnosis every day.
13) Dancer --- from 3 yrs old until I ruined my knee at 19 and had to get a bone realignment I was a dancer, most frequent, ballet. My core muscles have always been ridiculously strong and a lot of the knots and stuff I have in that area I feel could have been partly caused by always having them engaged, even before IC pain.
14) Splenda --- from the time it came out until IC I used a ridiculous amount of Splenda in basically everything.
15) Nearly dying --- I nearly died from my eating disorder more than once and my entire body was shutting down including my kidneys, liver, heart, etc. and I wonder if IC is connected to the body shutting down.
16) Fibromyalgia --- I was recently diagnosed and I know some of you for sure have this as well.
This is all I can think of right now but I may add more later. I realize that these are very personal things to admit to, but if we could find some links, I think we all agree that it's worth it. I know most of you are very non-judgmental and so I feel safe sharing this here. Any replies would be greatly appreciated. Let's put our heads together!!!
Sincerely,
Kat
You all have been the best resource for me about IC and I would be in a lot more pain and lost if it wasn't for you. We have a priceless resource --- each other. So, I would like to put some things out there and see if we can find a link to the precursors of IC and related problems. I am going to put down some of my issues and habits growing up and if you have/had any of these things in your life, please let us know which ones and also feel free to add your own. Let's see if we can find some answers.
1) Endometriosis --- about a year before I was diagnosed with IC I was diagnosed with endometriosis.
2) IBS --- I have had IBS since I was a very young child; IBS-C (constipation).
3) Hypo-thyroidism --- diagnosed at 16, my mom has it too.
4) Anorexia --- I was anorexic at 14 for nearly a year.
5) Bulimia --- I was bulimic for over 6 years (but I have not been for almost 3 years).
6) GERD --- was diagnosed at 15.
7) Water retention problems --- this started when I was 15 and I take Novo-Spirozine for it.
8) Cocaine addiction --- I had a short-term cocaine addiction during the worst days of my eating disorder as a teenager.
9) Horrible periods --- getting my period at 9 years old, I took anaprox (naproxen sodium) for my periods for over 10 years every single month.
10) Dieting --- extreme forms of diets like juice diets and Dr. Bernstein's (which is SO unhealthy goodness what was I thinking?).
11) Acidic diet --- I had a very acidic diet since I was a little kid --- pickles, pickled beets, seasoned rice vinegar, balsamic vinegar, tons of tomatoes, lemons, limes, salsa, grapefruit almost every day, etc.
12) Caffein addict --- Drank a ridiculous amount of coffee from high school until IC diagnosis every day.
13) Dancer --- from 3 yrs old until I ruined my knee at 19 and had to get a bone realignment I was a dancer, most frequent, ballet. My core muscles have always been ridiculously strong and a lot of the knots and stuff I have in that area I feel could have been partly caused by always having them engaged, even before IC pain.
14) Splenda --- from the time it came out until IC I used a ridiculous amount of Splenda in basically everything.
15) Nearly dying --- I nearly died from my eating disorder more than once and my entire body was shutting down including my kidneys, liver, heart, etc. and I wonder if IC is connected to the body shutting down.
16) Fibromyalgia --- I was recently diagnosed and I know some of you for sure have this as well.
This is all I can think of right now but I may add more later. I realize that these are very personal things to admit to, but if we could find some links, I think we all agree that it's worth it. I know most of you are very non-judgmental and so I feel safe sharing this here. Any replies would be greatly appreciated. Let's put our heads together!!!
Sincerely,
Kat
1. Chronic sinusitis and allergies started about age 30--63 now. Recent allergy test negative and sinus much better after using NetiPot.
2. Asthma started at age 40 and under control now
3. Few UTI's, less than 5 and no bladder or kidney infections
4. Broke pubic bone in 2000
5. IC started summer of 2005 with painful urination and frequency.
6. PFD started about 2-3 years ago
7. Was fairly active and exercised regularly
8. Ate normal diet, but drank Diet Pepsi and Coke often
Migraines (which run in my family)
Painful intercourse (I've never been able to have intercourse that isn't painful!)
Horrible candida yeast infections
Acid reflux
Scoliosis
Mitral valve prolapse
1) Unbearable cramps since I was about 16. Started my period when I was 11. Each year they would get worse and worse.
2) Extreme dieting which led to being anorexic and bulimic for about 2 years.
3) Family history of autoimmune diseases in the females on my maternal side.
4) My mom has all the same problems as I have but has never went to be diagnosed with ENDO. She also had chronic bacterial infections, UTI's, and skin allergies at my age. She now has LUPUS.
5) Diagnosed w/ ENDO 2 years ago at age 22
6) Extreme caffeine addict including pop, coffee, and energy drinks for 5 years. Was not a big water drinker until this year. Now only 1 cup of cofee a day.
7) Tested positive for ANA's (antibody) found in LUPUS patients and other autoimmune diseases, but tested negative for LUPUS.
8) "IBS" my whole life. Mainly constipation until this year. Now alternating constipation and diarhea. Dr's told my mom as a child I had the worst nerves they'd ever seen in someone my age.
9) Was molested by an uncle as a child and experienced other tramatic things happen in my childhood causing the stress that lead to IBS.
10) Became a serious drinker for 3 years in college, mainly hard liqour. I took a lot of shots or would just drink Vodka with water.
11) Became sexually active at age 20 and have suffered from bacterial infections pretty much since (NOT yeast infections).
12) UTI/bladder infections started this year.
13) Recently had a cystoscopy showing a serious bacterial infection that cloesd off my Uretha 3/4th's of the way. At one point had spread to my kidney and caused me to go to the ER.
14) After 2 months on antibiotics and surgery to remove the infected tissue, I have another UTI. The vaginal bacterial infections CAUSE the UTI's. The bacteria travels into my urethra and to my bladder.