Intercystial Cystitis

S. - I researched IC and also put your disease on my message board. I received this response:

Hi J., here is a testimonial from someone in my downline that has IC:

Hi, I apologize it took me so long to return this, especially if you know someone who suffers from interstitial cystitis............it is soooo unbelievably painful. My doctor and his assistant both told me that it was okay for me to try and that alot of people have help managing their I.C. with mangosteen. I was going to take it and see if I had any change within a few weeks.............However, my personal results were within 2 to 3 days. Using xango I have almost completely gone off all pain meds and even the amytriptilyne.............(which is prescribed for chronic pain). Mangosteen has made me feel normal again .......... I will not stop using it. It has made the pain and discomfort go away and it has given me alot of energy. My kids have noticed a huge difference in my temperment............

Hope this helps you.........Mike

S. - For more information on mangosteen fruit juice you can contact me: www.insidemangosteen.com/judy0114 or ____@____.com.

S.,

I have I.C. too. Here is what works best for me, but everybody is different. I hope this helps...

1) I have a cystoscope with hydro-dillitation surgery every 3-4 months. This causes the defective bladder lining to come off allowing a new (temporarily) healthy lining to grow. I just had surgery on the 10th and I am feeling "normal" again.
2) I take UTA daily for spasms and a low dose antibiotic daily to prevent infections.
3) I do tend to have flare ups around my menstrual cycle, so I take my birth control pills continuously and only have a period every 3 months.
4) I find that sitting in a bath with the hottest water you can stand (I dangle my legs outside of the bathtub) helps disrupt the pain signal for short periods of time. Sometimes long enough to fall asleep.
5) I have taken Lortab in the past for the pain, but after my last surgery, I have decided that I do not want to take narcotic pain pills anymore. The detox and negative side effects far outweigh the benefits. They may help with the pain, but the pressure is always there. I have non-narcotic pain pills, Ultram, to use only with severe flare-ups.
6) My bladder is affected by my diet. I cannot eat or drink anything with high amounts of acid. Also, caffeine is off limits.
7) Drink a lot of water. It is hard because you do not want to have to go pee all of the time, but the tendency is to restrict fluids causing the urine to become highly concentrated. It is better to dilute the toxicity of your urine with as much water as possible.

I am so sorry that you have been diagnosed with this terrible disease. I have had bladder problems my whole life and I was, believe-it-or-not, actually relieved when I received a formal diagnosis, at the age of 29, from a qualified doctor who has experience successfully treating I.C. patients. He did have to biopsy my bladder to confirm the diagnosis (Mast cells are present in an I.C. bladder). I will be happy to give you his name and number if you are interested in driving to Memphis for treatment. He has a vast understanding of I.C. and makes his I.C. patients a top priority.

There is also an online I.C. support group with valuable resources i.e. discussion boards, printed material (such as books on diet and helping your children and husband understand your diagnosis).

I will be happy to talk to you about it if you want to send me a message.

Good luck. Again, I am so sorry to hear about your diagnosis and I will be happy to talk to you anytime, even if it is just to vent.

Best,
E.

S.,
Although I don't have IC, my urologist did give me a an IC-Smart Diet. You may already be following a diet like this but it might not hurt to ask your Dr. about it. Certain foods can cause additional distress when you're suffering with IC. Typically, foods high in acid and potassium as well as beverages containing caffeine and alcohol, should be avoided. Hope this helps! ~ D.

Have you ruled out any dietary causes? Usually chronic urinary tract infections are caused by food sensitivities. Some of the most common are gluten, soy, and milk. Try eliminating these foods from your diet and see if there is any change.

S., from what I read, I feel so bad for you. It seems like it is a constant pain. I am sorry you are having to go through this.

From what I have read... here are some ideas, some in which you might have already tried.

Transcutaneous Electrical Nerve Stimulation

With transcutaneous electrical nerve stimulation (TENS), mild electric pulses enter the body for minutes to hours two or more times a day either through wires placed on the lower back or just above the pubic area, between the navel and the pubic hair, or through special devices inserted into the vagina in women or into the rectum in men. Although scientists do not know exactly how TENS relieves pelvic pain, it has been suggested that the electrical pulses may increase blood flow to the bladder, strengthen pelvic muscles that help control the bladder, or trigger the release of substances that block pain.

TENS is relatively inexpensive and allows the patient to take an active part in treatment. Within some guidelines, the patient decides when, how long, and at what intensity TENS will be used. It has been most helpful in relieving pain and decreasing frequency in patients with Hunner's ulcers. Smokers do not respond as well as nonsmokers. If TENS is going to help, improvement is usually apparent in 3 to 4 months.

Diet

There is no scientific evidence linking diet to IC / PBS, but many doctors and patients find that alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages, and high-acid foods may contribute to bladder irritation and inflammation. Some patients also note that their symptoms worsen after eating or drinking products containing artificial sweeteners. Patients may try eliminating various items from their diet and reintroducing them one at a time to determine which, if any, affect their symptoms. However, maintaining a varied, well balanced diet is important.

Smoking

Many patients feel that smoking makes their symptoms worse. How the by-products of tobacco that are excreted in the urine affect IC / PBS is unknown. Smoking, however, is the major known cause of bladder cancer. Therefore, one of the best things smokers can do for their bladder and their overall health is to quit.

Exercise

Many patients feel that gentle stretching exercises help relieve IC / PBS symptoms.

Bladder Training

People who have found adequate relief from pain may be able to reduce frequency by using bladder training techniques. Methods vary, but basically patients decide to void (empty their bladder) at designated times and use relaxation techniques and distractions to keep to the schedule. Gradually, patients try to lengthen the time between scheduled voids. A diary in which to record voiding times is usually helpful in keeping track of progress.

You can check out the Bladder Diary here.

http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialc...

Also I obtained the above information from this site, there is much more to read about:

http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialc...

S., I have this same condition. If you google it you will find good info. My Dr. told me that it is misdiagnosed quite often as having urinary tract infections, b/c the symptoms are the same. I was diagnosed with it last year by my gynocologist. He gave bladder treatments (I had to do for a year, ended about 1 month ago). These treatments started out 3 days a week for approx. 6 months, then 2 days for a approx. 6 months, then 1 day for a while and I finally gradually weaned off the treatments. The treatments are injected through a catheter into the bladder. I also take a medication named Elmiron. I feel much better now, still have some discomfort once in a while, but nothing like I was having. This can also be controlled by a low acidic diet. Contact me if you have any further questions. I hope you can try to do these treatments and feel better.

I also have been diagnosed with I.C. I am 25 now but was diagnosed with it while I was in high school - even though doctors used to assume that it was a problem women didn't have until they were much older. I have had symptoms since around puberty. I'm sorry to hear of anyone having this, but at the same time it is nice to know that I am not alone. For a year or two I took a medication called Elmiron that is supposed to help build back the lining of your bladder. I took it everyday and didn't notice any side effects - it also does not provide immediate results, but I do not suffer from IC symptoms near as much as I used to. You may want to check with your doctor about it. I have never noticed any foods or drinks that aggrevate my symptoms - but I will get a flare up if I have not had enough fluids through the day. I know that water gives my bladder the most relief - I still struggle to make myself choose water over other drinks though. If you like tea, a great alternative I now use is green tea - you can buy the bags and make it just like you would regular tea and it tastes just as great...and is easier on your bladder. Drinking lots of water everyday is the best way to help alleviate pain. I will admit that in the last few years if I'm experiencing burning I will drink a beer and that seems to help flush me out and stop the burning temporarily. I have also been treated with electrodes like the other lady mentioned. I did not happen to have pain at the time I recieved the treatment, but I do think it helped pain and burning from occuring - ask your doctor about it - it's relaxing too! I hope this helps you - I know the pain can be overwhelming and very uncomfortable and it's hard for other people to understand. Relief is possible even though I almost gave up - so hang in there and you will find a solution, don't give up!

I'm not sure exactly what that is, but I do know that the women in my family USED to get a lot of UTIs until we heard about this: If you put a of teaspoon of the herb "thyme" in some boiling water and let it sit for a few minutes (thyme tea), then strain it and drink 1 - 3 glasses a day, it will eliminate a lot of bacteria in the bladder, keeping things flowing in less trips to the bathroom and my family has done this for years, when I have a UTI, I make a whole pot of thyme tea in the coffee pot and the UTI is gone after 3 days of drinking it throughout the day. It also clears up bacteria in other places in the body and aids in better lung function during allergy season. AND it's CHEAP stuff, at the grocery store. good luck, I don't know if UTIs are part of that problem, but Thyme helped all the women in my family!

I got diagnosed with this same condition 5 years ago. The doctor perscribed my oxybutynin to take during the day. I pinpointed what made me hurt. For me it was any kind of liquid with real sugar in it. I cannot drink soda's, kool-aid, etc... Everything has to be diet or splenda. I can eat foods with sugar. It's basicall liquid sugar. Write down what you eat during the day and you should be able to correlate the pain with your diet.

If you start to hurt, drink a bottle of water. And stress can make it hurt too. I am pregnant now, so that is my only remedy (water). But pop one of the pills I recommended they make the pain stop within 20 minutes and there are no side effects.

GOOD LUCK! No that you are not alone! You need to be overly paranoid about your bladder. Pee often, drink lots of water, and pee before and after sex. Go in the middle of the night. Pinpoint what makes you hurt and give it up, it changes everything! Coffee will make you hurt too. You don't have to quit it, just change the sugar to splenda.

I too have IC and for the months before the Elmyron started working my doctor and I did the rescue bladder irrigations at first 3xs/week then went down to 2 now I go to him when I have a flair up of symptoms. He also put me on atarax at bedtime to help relax my bladder and allow me to sleep at night without having to get up 5-6times a night, and vicoden 7.5/500 for when the pain was really really bad. From what I understand everybody is different on what works. Also you might want to check out www.ic-network.com They have alot of information and boards with nice people to help you out. Hope this helps
J.

Hi! It is nice to finally know someone else who has been diagnosed with the same problem as myself. I was diagnosed with interstitial cystitis about 2 years ago. I was given several medications to help temporarily put this disease in remission and for the pain. One medication is called Elmiron. I dont know if you were told that when you are diagnosed with this, they are really saying that you have no lining in your bladder and that you have many ulcers that have busted and spread throughout the bladder and that is what causes the extreme pain. The Elmiron helps heal the ulcers to try and ease some of the pain, along with a semi strong narcotic pain medication. As I am sure you were told, this is a disease that is everlasting, so it is important that you find something that agrees with your body to make your pain as comfortable as possible, as I have. I take Elmiron on top of Oxycodone. Also try a heating pad, limit soda and acidic foods and drinks, especially alchohol, thats the worst. Good luck and again if you would like to talk further about this, my email is ____@____.com

Hi S.,
I was diagnosed 15 years ago with intercystial cystitis, at the time I was miserable and stayed that way for a long time. I have been seeing the same doctor for 7 years, Dr. Curtis Matthews with Carolina Urology, he is WONDERFUL!! I have been on the same meds for a while and for the past few years I have been having one treatment done as an outpatient, it is called hydrodistention (that spelling may not be right). The best thing I can tell you is drink lots of water, stay away from any type of acidic foods or drinks (citris or tomato) and no caffiene. This is a little personal but this is something else they will tell you, don't take sits baths, wash with antibacterial soap only in your private area and only use your hand, no washcloths or anything that can have bacteria on it. I hope this helps, please let me know if I can answer anymore questions for you.

S.,

I was diagnosed with IC two years ago after having issues with it since marrying at the young age of 20. Mine flares up improper diet and sex.

Basically, if I follow the diet restrictions (which you should have received) and don't have sex I'm fine. I CANNOT have any caffeine or I am quickly affected. I also drink 100 oz of water/day - mostly just because I like water. But also because if I don't, I get a UTI.

I also get UTIs after intercourse. The best action there has been to drink lots of water (again) and I usually take a Nitrofur (antibiotic solely for the urinary system). If I need anything further, I go on a round of Urised which is incredible stuff.

Mostly, I avoid caffeine and drink lots of water and put off intercourse as long as possible, as horrifying as that is.

Good luck!