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.
Just sharing some info on another option besides Elmiron that might interest you.
After recently being diagnosed with IC, after having IC for over 30 yrs now, I opted out of taking Elmiron to instead take aloe vera capsules (2 tabs 3x/day) for my IC problem. They have been helping, without the side effects of Elmiron. My doc was amazed at how much my bladder lining had improved since being on the aloe vera for only 6 weeks. My doc said for me not to take the Elmiron since the aloe vera capsules were doing an even better job and quicker than the Elmiron would have done. She's going to recommend it to her other IC patients as another option. The aloe vera works just like the elmiron in that it repairs the lining and protects it from irritation, just minus the side effects. There are 2 companies who makes these capsules specifically for IC patients, but the one I use because even the actual capsule doesn't irritate the bladder is the company called "Healthy Life Harvest". The capsules are called "aloe vera whole leaf capsules".
Just thought I'd share this info since I'd read where some of you are having trouble with the Elmiron side effects. If anyone else has tried other successful options beside prescription meds for IC, please share!
After recently being diagnosed with IC, after having IC for over 30 yrs now, I opted out of taking Elmiron to instead take aloe vera capsules (2 tabs 3x/day) for my IC problem. They have been helping, without the side effects of Elmiron. My doc was amazed at how much my bladder lining had improved since being on the aloe vera for only 6 weeks. My doc said for me not to take the Elmiron since the aloe vera capsules were doing an even better job and quicker than the Elmiron would have done. She's going to recommend it to her other IC patients as another option. The aloe vera works just like the elmiron in that it repairs the lining and protects it from irritation, just minus the side effects. There are 2 companies who makes these capsules specifically for IC patients, but the one I use because even the actual capsule doesn't irritate the bladder is the company called "Healthy Life Harvest". The capsules are called "aloe vera whole leaf capsules".
Just thought I'd share this info since I'd read where some of you are having trouble with the Elmiron side effects. If anyone else has tried other successful options beside prescription meds for IC, please share!
Thanks
With IC, I battled chronic pain, urgency, & the inability to empty my bladder completely (urinary retention). I mentioned earlier that after 6 weeks on this product, I noticed a big improvement. Well...after 3 months I felt pretty darn close to normal. The chronic pain I had 24/7 is gone. Yippee! The number of times I "go" during the day seems to be normal now for someone my age which has been a huge improvement, and the most I have to "go" during the night is twice, but usually only once. Again, yippee! And, the retention problem I had is no more. Double Yippee! I'm glad, too, because I was about to have to learn how to use a catheter. Yikes!
The actual name of the product I buy off the website www.healthylifeharvest.com is called
"I.C. Aloe Vera" capsules. The company has now increased it dosage to 700mg. I'm still using the old dosage of 600mg. For the first 3 months, I took 2 capsules 3 times a day. At month 4 I cut back to 2 capsules 2 times a day. In a month I plan on taking only what the bottle directions recommend which is 1 capsule 3 times a day. Along with taking the aloe capsules, I followed the IC diet strictly for 3 months before putting foods/drinks back into my diet. Amazingly I'm able to eat & drink pretty much anything I want...even coffee & chocolate! I do take 2 Prelief tablets with my coffee to neutralize the acid...just in case.
As for flares ups...I have them only around my period, which is basically the urgency problem, but it is way much better than it used to be. And the only time I get even the slightest bit of pain is when I've had lots to drink and have been sitting for a couple of hours holding it because I couldn't get to the restroom. It used to be that as soon as any urine (the tiniest little bit) hit my bladder, I had severe pain and had to relieve myself.
Everyone is different, and this treatment may not work for you but I wanted you to know about this option. And...I had the worse case of IC my doc had seen in her 25 yrs of practice so I was very happy this product worked for me! If you try this product, I hope & pray it works for you as well as it did for me~*
NYbabygirl...funny you mentioned the company's testimonies. Supposedly my testimony is going to be posted on their website some time this month. I hope the aloe works for you!!
And of course stick to the IC diet while you are trying to repair your bladder lining or it will take longer for the aloe vera leaf capsules to repair your lining. Slowly put foods & drinks back into your diet one at a time, no sooner than 3 months on the diet. Then whatever bothers your bladder at that point...avoid it big time! To me there is no food or beverage worth the pain.
Best of luck to all of you trying to get your IC under control regardless what method or products you are using~*