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.
Hey everyone,
I'm having the first flare I've had in over a month since I started Uracyst... I pushed myself way too hard this week so it's my own fault, but I wanted to know if there's anything that you ladies do for flares that I don't know about. So far, I have:
- taken baking soda
- used a heating pad
- I'm drinking TONS of water
- staying away from any of the foods that I can normally eat that might bother it more
- taking it easy
- hot baths
and I was going to go to see my surgeon to get a bladder instillation and some point local anesthetic injections but I'm not well enough to get there on my own so I'm doing it next week. Is there something I'm missing that might help? Any suggestions would be greatly appreciated... I'm going crazy in this much pain :( Thanks!
- KAT
I'm having the first flare I've had in over a month since I started Uracyst... I pushed myself way too hard this week so it's my own fault, but I wanted to know if there's anything that you ladies do for flares that I don't know about. So far, I have:
- taken baking soda
- used a heating pad
- I'm drinking TONS of water
- staying away from any of the foods that I can normally eat that might bother it more
- taking it easy
- hot baths
and I was going to go to see my surgeon to get a bladder instillation and some point local anesthetic injections but I'm not well enough to get there on my own so I'm doing it next week. Is there something I'm missing that might help? Any suggestions would be greatly appreciated... I'm going crazy in this much pain :( Thanks!
- KAT
have u tried Epsom salt in ur hot baths.have u tried Atarax this pill can make u really drowsy
but I just take half when I'm in a flare and helps a little bit.I only take this when I don't have to drive.I used to take benadryl (dye-free) which didn't make me as drowsy as atarax and it used to help
but I would try to cut out all sugar and
salt.May not make a difference,but worth
a try.
I take hour long hot showers everyday. I know you feel like hell, but I find being in constant motion helps. Walking, cleaning... I also developed some techniques to deal with blocking out the pain. Distracting yourself with people and ipods and television and the internet. Use your family and friends (if they are supportive.)
The bladder instillations do help with the pain. The only problem is that they hurt like a UTI after you get them and sometimes, the DSMO byproduct comes through your pores and you stick like garlic. They\'re also nauseating. But the next day, you will see a reduction in the level of pain. My urogyneocologist wants me to have one every week but I can\'t tolerate it.
As far as you missing something with treatment, unfortunately, you\'re not. All they\'ve got is DSMO and Elmiron. Have you tried Elmiron? A nurse on this site recommended Flexaril (not sure if I spelled that right) for bladder spasms.-Let me know how it goes.
-Gloria
Atarax helps. It\'s an anti-histamine. Lynnann is right about the sugar. Stick to foods that are whole- more than 3 ingredients, forget it.
I hate to say it, but I\'ve been forced to go with the painkillers. This Thursday, I\'m meeting with my pain doctor to discuss getting a neural sacral implant. But don\'t get nervous; you will rewpond to conventional therapies.
You\'ll get through this,
Gloria
Sometimes I have no choice but to take pain medications,I hate them, they make me nauseous,constipated and itchy.Elavil did worked for me,I didn\'t feel no pain the next day I even went bike riding something I hadn\'t done in a very long while,shortly after I was in so much pain I had to take a Vicodin.My doctor gave me Vicodin for breakthrough pain.It didn\'t make me sick when I took it this time that\'s weird.I knew what caused the pain of course and I felt so guilty afterwards.Before I tried Elavil my doctor had put me on a combination of Atarax at bedtime and Vicodin,I tried tramadol but I had an allergic reaction.I agree with lynnAnn too, about the sugar and salt.I don\'t eat foods that contain a lot of sugar or salt because they can cause an IC flare.Have you tried tramadol for pain? it\'s not addictive.I hope you feel better soon!
I\'m sory you\'re having such a hard time. Elavil helped me, I\'ve been taking it for years. I also take Percocet, Neurontin, Tramadol and I just started taking CystoProtek that I ordered from the IC Network website. In the past the DMSO instillations have helped me. I\'ve also had a Cysto Hydrodistention for treatment. Everyone reacts different to treatments. You have to find what works for you and I wish you luck in doing so. I\'ve been struggling for the last couple of years because treatments that helped me in the past no longer help me for some reason. Keep us posed on how you are doing.
jae
Thank you so much for your support and suggestions. I don't actually get DSMO instillations; I get Uracyst instillations. Anyway, I got one on Tuesday along with four local anesthetic shots into my lower abdomen and a script for oxycodone. I have been taking that in conjunction with my Amitriptyline and the combo is pretty intense. I am already taking Elmiron. I am still in a flare though and it's really getting to me. I really really hope it calms down too because I don't want to lose my summer courses. Thanks again guys :) this site has been SOOOOOO helpful.
- KAT xo