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Thrilled to read advice regarding interstitial cystitis

Posted By Brenda (Spring City, Pa) on 11/28/2010

Hello Everyone,
I have just found this internet site and am thrilled to read about some of the remedies and experiences that other IC patients experience. I have had IC for 15 years and the past 3 years have been living hell. I am in constant, severe, unrelenting pain. Not to mention I take a huge amount of narcotic pain medication and still live with a lot of breakthrough pain. I suffer tremendously, I can only sit for a few hours a day because it intensifies my pain. So I spend most days in bed which is so frustrating and depressing. This summer alone I have had 10 low bacteria count UTI's, ended up in the hospital with a kidney infection and septicemia (infection in my blood). I was one sick patient.

Since then, my pain is worse. I am convinced that the bacteria penetrate the bladder wall because of the damaged lining and that longer treatment with antibiotics are necessary to get rid of this problem. I read on one of the blogs that there is a microscopic parasite, schistosomes, that burrow into the lining. Can anyone tell me more about this? My life has changed dramatically these past 3 years. I am now disabled and not working. The excruciating pain keeps me from doing the things I love. I can barely get dinner on the table for my darling husband. I can't exercise because my pain is so severe. All my favorite activities, biking, golfing, hiking, skiing, walking my dog etc have left me so depressed. The pain is beginning to make me question, why am I in living hell? I've written down many of the suggestions from many of the blogs and will give them a try.

Within the next few weeks I am going to be hospitalized for a special treatment for what they call "Chronic Regional Pain Syndrome". I will receive IV Lidocaine for 5 days, plus have a continuous bladder irrigation with the IC drug cocktail which also contains Marcaine. The rationale is that the sympathetic nervous system is so up regulated from the years of pain, that the problem is more complex than just my bladder. The medical literature reports are mediocore at best, some patients get complete relief, but most patients get about 38-50% reduction in their pain and opiate use. The oxycontin is making me so sick in other ways and I pray for the day when I can eliminate these drugs from my life.

In my opinion, the medical community has no idea how to treat IC. They throw everything at you, but nothing ever works, so you just continue to suffer and attempt to live your life in constant pain. I am going to see a GYN, infectious disease doctor and I believe he may agree that bacteria is imbedded in my bladder. Also, being post menopausal my tissues have become so thin and atrophy makes this worse. Thanks for listening to my long message, but I'm hoping someone out there shares the same experience and can recommend one of these treatments. BTW, does anyone go to a homeopathic doctor for treatment? Thanks, Brenda

Replied by Janis (Hudson's Hope, Bc Canada) on 12/01/2010

Hi Brenda, I had IC. And nothing helped until I ate nothing but raw vegetables and raw veg. Juices... Nothing else. You must alkaline your system. This worked for me in 2 days. But you may need longer, do not stop just because you feel better. Eventually you can add raw fruits, raw nuts (not peanuts). Carrot juice as your juice base add a little raw beet, celery, cabbage to it. etc...... Email me if you need more info. Good luck, Janis

Replied by Name (City, State) on 12/17/2010

I would guess that you drink a lot of coffee or tea, use artificial sweeteners such as sucrolose, eat chocolate, and don't drink milk. Try Ted's alkalizing remedies, and avoid those foods. To test, put a 1/2 teaspoon of baking soda (not powder) in a glass of water, dissolve, and drink it. Wait a few hours, see if you are more comfortable.

Replied by Little_ducks (London, England) on 01/08/2011

Dear Brenda,
I can only imagine how hard it must be for you, I suffered for 9 months which was more than enough for me. The things I have found to work for me are as follows:

1) I started to used Marshmallow root, in capsule or tincture form are good, this helps to reduce swelling the mucous membranes anywhere in the body. This helps the pain but does not get rid of it altogether.

2) I have had much homeopathic treatment, the right remedies for each person often differ, but the remedies I have used/still use are - Histamine 30c, Arnica 10m, Merc Cor 1m, Benzoic Acid 30c. It is best to consult a homeopath about dosage etc.

3)I have given up ALL wheat, barley, oats, rye, soya and any foods that contain small amounts of each of those. This has been the answer for me, it has stopped the pain. After eliminating just the wheat I felt pain relief after a couple of days. Although it is hard to alter diet to such a degree the new lease of life I have had has just been FANTASTIC! If you try out the above, just remember things like vinegar, beer, sausages and ham are made from or contain many of the grains or addatives from the grains that you are trying to avoid. I do suffer pain occasionally, but that is only if cross contamination or carelessness has resulted in ingestion of the afore mentioned grains. I wish you GOOD LUCK! No one deserves to suffer the pain that an inflamed bladder causes. And such a debilitating problem really weakens the body as well as the spirit.

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