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so i just had my 2nd dmso instillation. i broke down crying at the drs office cuz i couldnt pee afterwards.they had drain the pee out.i begged the nurse to call the dr so he could see how much pain i was in/i couldnt pee..but apparently he was too busy to come see me as usual. told me to go home take a warm bath and some percoset.i hate being doped up on pain meds. but whats the alternative if youre in so much pain?i got to the point today where i was hurting so bad i was thinking of stopping all these meds and treatments and going the natural route. just letting my body heal the natural way. my body seems to be shouting out.. no more meds and my bladder seems to be shouting out no more instills. just wondering if theres anyone who has went into remission or has stories how natural treatments worked for them.
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Newly IC diagnosed as of February 2011.
Medications I'm on that seem to work:
Zoloft- one once a day
Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)
Failed Meds:
Elmiron-after 4 months,digestive side effects got to be too much
tramadol-allergic
DMSO treatments(5-6)
probiotics
THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
AROMATHERAPY-candles,incense
Village Naturals Aches and Pains Peppermint Bath Salts
Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion
ACUPUNCTURE/HERBS
Significant pain relief so far.
MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
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***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***
Add me on facebook Angela Hasic
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Lord, make me an instrument of your peace;
where there is hatred, let me sow love;
when there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.
Grant that I may not so much seek
to be consoled as to console;
to be understood, as to understand,
to be loved as to love;
for it is in giving that we receive,
it is in pardoning that we are pardoned,
and it is in dying [to ourselves] that we are born to eternal life.
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I've heard that MSM is very similar, chemically, to DMSO. You might consider that - 4 grams a day or more. Nature's Way makes capsules with no fillers. I've been taking that for a week but haven't noticed any improvement yet.
I wonder how long it takes for the bladder to heal?
Dg. with IC 2/15/10
Other conditions: depression, ADHD, lactose intolerance, celiac disease, chronic fatigue syndrome, IBS-C.
Medications I'm on: Vyvanse 70mg, Xanax 1 mg as needed, Wellbutrin XL 150 mg, Vicodin 5/500 as needed for pain, Microgestin 1/20 continuously.
Supplements I'm taking: Chondroitin Sulfate, N-acetyl-glucosamine, MSM 3gr/day, Pancreatin, B-5, Ester-C, and marshmallow root tea -
I find it baffling they let you go home after having to catheterize you since you couldn't pee! Is this normal after DMSO? It seems like this has been a symptom for you since the beginning. Its like I want to stand up and shout WHY CAN'T SHE PEE?! Sorry, I'm just feeling kinda spunky today. But really I do think its awful that they either didn't call him back in OR he didn't come back in on his own. I ask for doctors to come back all the time cuz it seems like I think of my questions the minute they're out the door and I'll say to the nurses, can you tell him I have a few more questions??? And he comes back in as he should.Cindi
Gelnique for frequency/urgency - works great
Macrobid after sex
Prilosec, continuous birth control pills
synthroid .088mg, mucinex-d, restasis
Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil
Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.
IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
Great treatment flowchart on page 19 of the pdfComment
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Ugh! Some of the doctors out there are just getting so high and mighty. My previous OB was the same way. Appointments were always rushed, and if I had additional questions, he was always too busy to come back in the room. How frustrating! In terms of your meds, can you at least stay on the Elmiron? That definitely wouldn't cause your bladder to hurt, and will hopefully help in time. I was on it for 4 months and seeing some big improvements. I had to go off of it when I got pregnant, and have now been back on it for a month. It takes awhile to work. A lot of people take Desert Harvest Aloe Vera. That is supposed to work. There is also Cysta-Q and Cystoprotek. I haven't taken these yet, but probably will start at some point.
Anyway, good luck! I hope things get better for you really soon. Oh, one more thing... I didn't see any Atarax or Elavil in your meds list. These aren't natural, but a lot of IC'ers are one one of these. They basically calm the bladder down. I take Atarax, and find that it really helps.~Valery~
Dx with IC 3/2009 - Cysto w/Hydro
Meds: Elmiron (400mg), Atarax (10mg), Elavil (20mg), Pyridium (as needed)Comment
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