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.

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Kidneys & Bladder
/ Interstitial Cystitis (IC) Support Group

this is so hard

papelle
papelle

I notice people don't respond a lot on this group.  I don't fault anyone, I don't respond to people's posts on here either...I think those of us with IC are so discouraged and in such bad shape that we probably don't have the energy to support others...I know that if I ever found a treatment that worked I would be all over this site posting what worked for me.  But to date nothing has ever worked.  The last two months have been unbearable.  I've had IC for about 10 years with bad times but I could always rely on it going away...that they were "flare-ups" that would subside eventually.  Not now.  Now it is constant agony.  I cannot live like this.  All I do is cry.  I'm too exhausted to try to google how to help myself, I've tried everything anyway.  I don't understand why this is happening.  I haven't changed anything in my life.  I have a very bland diet due to GERD issues to begin with.  Today, for the first time, I don't think I can control my bladder.  Before, although I really felt like I had to pee, I could always hold it.  Although it was tortuous sometimes, I could apply the "mind over bladder".  But today, sitting on my couch, I'm pretty sure I'm going to pee myself.  I have no idea how I will make it through the night.  A diaper?  I guess that is what I am reduced to now.  I'm 47 and I'm going to be wearing diapers.  How can I live like this?

BeckyJoMcd
BeckyJoMcd
Have you discussed your incontinence with your doctor? There are medications that can help you retain your urine better, and even Botox treatments that some women have had success with preventing "accidents". Personally, I take oxybutynin daily and it has decreased my accidents by 90%. You may also want to "schedule" your trips to the bathroom (such as going every 2 hours). It's better to go before it's an urgent situation.
JeriG
JeriG
Hi Papelle,,, i can relate in the fact that trying to hold your urine sometimes can be difficult, I am not like that all the time but there are times that I can;t get to the toilet,,, hence I always wear a light pad just in case. I have had incontinence for over 14 years and have good months and bad weeks....it always seems once a month I have an issue that I cant hold my urine. I also was told the Dr. thinks I have IC...hence awaiting surgery appointment so they can look in my bladder as the Dr. thinks it might be a tumor in there and check for cancer....
ArleneAudrey
ArleneAudrey
I feel so bad for you. This IS a nightmare. I am 70 and was diagnosed with IC over 15 years ago. It used to come on and I would take Uristat otc and it would go away. Now its come on with a vengeance. I had my knee replaced 8 months ago and since then I've had nothing but stress and I'm thinking that could be a cause. Moved about three years ago so had no urologist here. Just went to her a few weeks ago. She wanted to do cystoscopy but I had the records sent from about eight years ago which shows a normal test and I really don't want to go through that again. She started me on Atriptyline 10 mg(Elavil) and well see how that works. So far I only took two. This morning woke up actually better but by tonight same thing. It's awful. Its now 5 in the morning and I can't sleep.
I know what you are going through, hang in there and try different things. O pray for us both.
isabelle1954
isabelle1954
Papelle, I thought you had disappeared since last year! Your situation does sound desperate but don't give up! I have struggled with FM, CF,IB,IC ever since my chemo from breast cancer at ager 38. There was always something that came up to help with my worst days. I'm sure you've tried baking soda(1 tsp in a glass of water). It took one hour before it worked, but worked better than the Codeine, etc. Foot massage and hot foot soaks helped too! Prayers.
SuB2527
SuB2527
Hi, I am at the beginning of this IC journey. I am 40 years old and have endometriosis. I first had an IC "flare?" after a laproscopy in 2016 to remove endometriosis. It was on my bladder of all places. Later that year, I had my uterus removed due to adenomyodis. I had another flare of bladder and pelvic pain for several months. Earlier this year, I had to have my left ovary removed due to cysts and torsion. I have been in severe pain since this surgery. I lost my job of 11 years because of the unrelenting pain. I am unable to care for my husband and boys (14 &9) the way I want to. I want my life back! I have an appointment this Friday with a urologist. My pcp referred me because he believes I have IC. What can I expect from this visit? I'm terrified this dr will not take me seriously. My life, figuratively speaking, is riding on this doctor caring enough to help me. Any advice wI'll be greatly appreciated!
isabelle1954
isabelle1954
I hope your doctor was able to find the problem. Pain is a huge problem
and the cause needs to be found. Prayers for you!