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
What a great idea. It dioes seem that we all have some things in common. Let me tel you some of my issues: horrible periods, recreational cocanine use in my younger years, trouble urinating for as long as I can remember, caffeine- only a cup a day but absolutely essential or I couldn't function or concentrate, sleeping problems since a very youmng age, terrible allergy problems always, compusional exerciser - first started out with weight mostly and worked out for about 2 hours a day almost daily. I then moved to kickboxing and I am an addict. Still love it but it is hard for me to do anymore. fibromyalgia, sexual difficulties ( pain with intercourse, and an almost always terrible burning pain I I do have vulvodynia. If you'd like I'd help you look at some of this info. to see what really stands out. Just speaking to some others - allergies problems and exercise seem to be commmon threads. Weird!
Kelly
Thank you so much for your reply, it's interesting to see how many things we've have in common. I'm kind of sad that no one else replied considering how hardcore I put myself out there but I'll keep this topic up a bit longer to see if anyone does. Regardless, I really appreciate your reply. Let me know how you're doing and take care.
Sincerely,
Kat
6-24, I only had one bladder infection which went away with treatment. I always wondered if I was born with IC and the pain didn't come until later on. I started having sex in my early 20's with no problems but then, when I turned 25, I had the worst pain imaginable. It started after having sex with my husband for the first time and it was horrible. My whole life, I had to use the bathroom often (with no pain) but I just thought I had overactive bladder but I was wrong. I also have hypothyroidism, since I was 17. I also used to competitively run long distance races weekly and had been running every day from ages 14-25. I stopped when I started getting IC pain everyday. Now I can't run at all without having pain. I heard a couple of other people say that they also had a thyroid problem and were very active with sports when they were younger. I'm not sure if they 2 are related to IC or not but it's good to list the factors that may have led up to IC. Let me know what you think! Thank you for sharing your posts! - Laura
1) Endometriosis - diagnosed the same time as IC by an exploratory laproscopy and cystoscopy due to chronic pelvic pain, increased urination, painful sex, and infertility.
2) IBS - I think I have had this since I was a child. As a child I Thought it normal to have a movement just once a week - I thought everyone was that way! About 3 yrs ago I was diagnosed with IBS after compaining about abdominal pain. This was diagnosed by an ultrasound
3) Bulimia - I was bulimic for 5 years off and on, but I have been free of it for about 2 1/2 yrs.
4)Acid Reflux (Gerd) - just diagnosed a couple months ago after complaining of chest pain. EKG-Normal X-Ray-Normal. Prilosec is helping ALOT!
5) Horrible periods --- first got my period at 12, someday would be so bad I could barely get out of bed
6) I used to eat GRAPEFRUIT a lot- I loved it and still do, but I dont eat it not.
7) Caffein addict -OMG, I drink wayyyyyy too much caffeine. I drink about (3) 20 oz drinks at work, then when I get home I drink about 2 or 3 cans...
8) Fibromyalgia - I was diagnosed with this at 18 for unexplained severe hip pain. RA test- negative Xray tests- negative
9) Infertility- been trying to conceive for over 2 yrs. I have one blocked tube and annovulation, and the endometriosis
10)Ovarian Cysts - diagnosed at 20 at the same time as the IBS, confirmed by ultrasound. I still have them frequently.
11)Asthma- Diagnosed a year ago, due to lung pain and shortness of breath. Since then it has gotten worse and worse.
12)Migraines- I haven't been diagnosed but I am sure that is what they are. My dad has them also. I have sensitivity to light, pounding headache, noise sensitivity, aura, nausea, dizziness.
13) Nosebleeds- since I was a child I have suffered with nosebleeds
I have been tested for thyroid probs and there are none.
I have had several UTI's, yeast infections, a BAD kidney infection, & Pelvic Inflammatory Disease.
I think that's all...
1. Coffee addict - had to have lots of creamer and sugar and nearly everyday. Loved Starbucks but no more.
2. Wine and alcohol - was considering becoming a wine conoseur. Not anymore.
3. Lots of anitbiotics for sinus infections. probably did 10 rounds in the year prior to being diagnosed with IC.
4. Terrible migraines from 15-17, extra-strength tylanol everyday and lots of it as well as blood pressure meds.
5. At 17 my family went 100% vegetarian/vegan. All health issues disappeared, lost weight, pms was gone, etc etc. Began to stray from it in 2005 and now I'm back on it thanks to the IC.
6. Birth Control- my IC seems to flair-up about a week before my period starts so maybe some of it must be related to hormone levels(???) On Orthotrycyclin-lo.
I always peed a lot.. Friends often commented throughout my life. I never got bladder infections or yeast infections.
I did develop allergies during pregnancy 10 years ago.
For my he'll year with ic they discovered my b cells low(immune system) and iga was high.. That's an immunoglobulin. I always wondered if others would have that? Not a standard test. It can mean chronic infection? I had a flu then peed blood and then had cytoscopy, cat scans etc. Cystoscopy showed inflammed bladder, no bacteria.. Sone urethral stenosis and polyps in bladder neck? I stiopped using hot tub around time of ic. I thought do many different things caused the horrific disease... Often wonder if hormones, auto immune.. I wonder if I have igan a kidney disease. I have had visible and non visible blood on occasion and trace protein.
I recently (as in last month) got diagnosed with obstructive lung disease. The doctor was sure I'd never had an asthma attack and I have now had 3 within the last 26 hrs. I NEVER had asthma as a kid --- I was an athlete for goodness sake. Have ANY of you been diagnosed with asthma around the time of your diagnoses of IC? I'm wondering if these too may be connected somehow... please let me know and thanks for all of your replies so far!
- Kat
1) Endometriosis - TAH done 3 yrs ago
2) Asthma for about 18 years
3) WorkoutAholic - always need to work out
4) dieting always!!!!!
5) Allergies
6) Coffee consumption (alot for the past 6 months due to stress and travel)
I wonder if there is a connection with any of these. But I always have eaten very healthy. With lots of Vegetables and fruit and always Organic.
1) PCOS - I was diagnosed with this about a year ago when my husband and I began having fertility problems
2) IBS --- Have had this as long as I can remember. Switching to goats milk has helped a lot.
3) Vulvadynia - This might be worse than the IC because sometimes I can barely walk and it interferes with my sex life. I was diagnosed with this around the time I was diagnosed with IC.
4) Anorexia --- I was diagnosed with this when I was 12 and had it off and on for about 4 years It's been 6 years.
5) Bulimia --- Off and on since I was 15 it's been over a year since I've purged.
6) Seasonal Affective Disorder
7) Cutting - I was a cutter probably since I was about 13 until about two years ago
8) Drug addiction (I ingested anything that would go up my nose) - Started when I was 17 been to a few rehabs. I've been clean for 2 years.
9) Irregular periods, probably for the PCOS
10) I was a vegatarian for about six months until I was diagnosed with IC
11) I was working to jobs and my day started at 3am. I never got any decent sleep.
I also have chronic back and joint pain. I just read today that IC is often related to rheumatoid arthritis, so I'm wondering if this could explain a few things.
I also experience insomnia.
Finally, I am considering talking to a doctor about the depression symptoms I've been experiencing since I was about 15.
This was a great idea! Thanks!
1. Endometriosis. It was so bad it was wrapped around my bowels and causing IBS like symptoms
2. Constant yeast infections since I was a young child
3. Migraines since I was a child
4. Horrible periods since the age of 12
5. Severe, Rapid Onset preeclampsia during pregnancy
6. Hyperemesis Gravidarum (Severe Nausea and Vomiting During Pregnancy)
7. Skin Allergies to scents, sulfates, certain materials. Can only wear cotton
8. Love Love Love Acidic foods, including avid wine and coffee drinker. This has been the toughest. When they gave me the food/beverage list of no-no's I almost cried. I have yet to completely give up coffee. I take a lot of Prelief!
9. Sex at an early age. I still feel like this has a lot to do with it. I started getting bladder infections when I became sexually active.
10. Easily stressed/emotional
Thanks for starting this! We do all have a lot of commonalities.....interesting.....hopefully enough research will be done to find a cure!
1) Started my period at 9 - and yes they were awful too... sometimes to the point where i could not leave my bed
2) Diagnosed with Endomitriosis and Polycystic ovarian disease two years before IC
3) Vegas nerve - Whenever my body is overstressed I pass out, my heart stops etc.
4) Died on the operating table for three minutes two years before IC diagnosis.
5) Painful intercourse
6) IBS - since I was sixteen
7) The rest of my crap was all emotional stuff but it led to over eating or periods of not eating at all
8) At sixteen I overdosed on every pill in the house - I always wonder if that is what caused everything....