Replied By Elizabeth (Nashville, Tn) on 11/17/2010
There is, in fact, no special test to diagnose IC. The doctors review your symptoms and test for bacteria. If no infection is found then they go right to the IC diagnosis. I don't have an IUD so I can't help you there but my symptoms started the way yours did (with the uti's, yi's and bv... I constantly had something going on down there. I was diagnosed last year after I had a cysto with a biopsy done to rule out anything life threatening. He wanted to put me on Elmiron, but the side effects were very alarming to me, so I decided against it. I now only have periodic flare ups, actually going through one now :( I have been next to symptom free for the past eight months. Right now I'm throwing everything I got at the IC... Uva ursi, turmeric, oregano oil, msm and I'm looking into other herbs. I hope you find some relief. God Bless!Replied By Gailde (Holiday, Florida) on 01/27/2011
Yes there is a test that can be done. I had the test done last week at my obgyn office. A Registered Nurse did the test. When it came to the potassium omg I thought I would die , it felt like a blow torch was burning my insides. This is how they tell you have I C. So I have been looking at natural things I can do for this and I will keep hunting and researching on this matter. I did just try the baking soda and water and I had instant relief. More than likely because people with IC are very acidic. So I am going to try to get my acid level down. You should get some urine test strips and check your urine to see if you are alkaline which is what it should be. I will see how I do. Will keep in touch. I also suffered for yrs with UTIs all the time.Replied By Barbsdawn (Lakeland, Fl Usa) on 02/07/2011
I don't recall her exact words but I understood my doctor to say the only way to get the diagnosis is to have a biopsy. OH, NO, NO, NO! My bladder has been truamatized enough through multiple bladder surgeries which created this condition to begin with. Even the insertion of a catherter tube caused spasmatic episodes for days. How I wish, before the surgery, I had had the pelvic floor PT. It did wonders for me and I might have been able to avoid this whole mess.Replied By Jean (Wellsboro, Pa) on 02/07/2011
I was diagnosed with IC 1 1/2 yrs ago after a urogynecologist did a rectocele & urethral sling surgery. She suspected it before surgery & after testing in her office she said the only true way to diagnose this is during surgery when the surgeon fills your bladder with saline to full capacity & then takes films of the bladder. IC shows as tears in the lining. I had tiny tears and the treatment recommended was Elmiron(which I declined as it is a type of blood thinner), or bladder instillations (which I was taught to do at home) especially diet.
Eliminating caffeine, all artificial sweetners, all citrus & tomato products and advanced kegal exercises. These have helped me quite a bit. Baking soda 1 tsp in water 2x day gives fairly fast relief. My IC is not severe but extremely uncomfortable. Marshmallow root tea was also recommended in a book a read. Also helpful, but I'm not very disciplined, is the gluten=free diet which helps overall body inflammation. Did I mention I also have Sjogren's syndrome (severe dry eyes, nose, mouth, etc.) And allergies. I'm going to try the colloidal silver. Hope this helps someone.
Replied By Marcie (Cheshire, Ct) on 03/02/2011
Jean I noticed you said you have Sjogrens and IC. I have them both as well. I have successfully used Elmiron. It takes a while (a year) to notice a difference, but it has changed my life. I would be very cautious about using supplements without checking with your rheumatologist because certain supplements can cause major problems with autoimmune conditions like Sjogrens. Two great resources are Women and Autoimmune Disease by Dr. Robert Lahita and The Interstitial Cystitis Survival Guide by Dr. Robert Moldwin. Both are experts in their fields. Have you been given Restatis eye drops? They really help the dry eye. Also, elimination diet for the IC is essential. Best of luck to you.Replied By Renae (Minneapolis, Mn) on 04/20/2011
I FOUND THE ANSWER TO THIS NASTY IC DISEASE. There is a book called "The Better Bladder Book", written just this year. In it, it says that Gluten Intolerance is the problem for 91% of the people with IC. I had been off most Gluten already, but was still eating croutons and chicken, and fish that was breaded, etc. I bought a basic book on "Gluten Intolerance" and WOW. One month later, I feel great!!! I can go without straining!! I can go in the public restroom again. Wow!! I don't sit and wait, and wait to go. It is way less of a diet constriction to go gluten free than remove all the IC foods and feel like I'm left with nothing to eat. I am already not eating sugar (IBS-I use stevia instead) and no dairy (face breaks out) so eating is difficult already.
After only 2 weeks I was off Hydroxyzine HCL (a antihistime for the bladder). I was able to cope just fine. After one month, I still go 2-4 times per night, but feel great during the day. I can eat onions and tomatoes again. White wine. I need more time to reintroduce most IC trigger foods, but I believe I will be able to slowly bring them back into my diet over the next year. The book said that most people getting off Gluten will take awhile to get better. This depends on how long you were sick and how bad. I was 5 yrs and in the end was a 10 out of 10 for constant severe pain. Now I can drive long distances and go on airplanes. This is HUGE for me. I can drive or sit though church/seminars for 1.5 hrs without a restroom break. I had been down to 5 minutes before getting off Gluten. That included at night. The auther of the book said she is overwhelmed iwth responses from IC people. I would love to see a seperate area on this website for people's responses to Gluten Intolerance. Do a search on the Author's name for more info.
Replied By Wendy Cohan Rn (Portland, Or) on 04/25/2011
This is in reply to Renae from Minneapolis. Nowhere in The Better Bladder Book do I say that 91% of IC patients have gluten intolerance. You are misquoting a study on a subset of psoriasis patients who tested positive for anti-gliadin antibodies, and of whom 91% then went on to see an improvement in their psoriasis symptoms. Figures on the percentage of IC patients who are both gluten intolerant and who improve on a gluten free diet range from 31% (the ICA survey) to 41% (the Baylor study, which has not yet been published). I'm glad you got well and are telling people about the book.Replied By Renae (Mpls, Mn) on 09/08/2011
http://www.wellbladder.com/bladder_symptoms__gluten_sensitivity
Thought you wrote this. Looks like you (the author) wrote this. I will quote part from above: "
But there was a glimmer of hope from the small percentage of people who seemed to heal spontaneously through a holistic approach involving self-treatment, relaxation, stress reduction, and purposeful attention to diet. One of the food sensitivities mentioned frequently was gluten. Patients in support groups for disorders like IC and celiac disease, a hereditary, autoimmune form of gluten intolerance, self-reported that eliminating gluten helped resolve their bladder symptoms, and in many cases, it was the only "treatment" that made a significant difference. " Anyways it advertises your book and talks about gluten being a big cause! Thanks.
Replied By Mary (Edina, Mn) on 12/02/2011
If you have tried everything, and you can't get relief, try what I have tried: It's a acidophilis product found online or in large health food stores. It contains:
Lactobacillus rhamnosus GR-1
Google these for the product. If you look under amazon for it, there are hundreds of Vaginial Bactriorosis stories, but also some on IC. So hey I bought a bottle and WOW was it helpful. Pain gone. Like fast. Except I still can't cheat on the diet. But I can sleep, and go in the car on long rides, etc. For anyone with pain: Here is the fastest route to use this product: Day 1 eat 2 in AM, and 2 in vaginal tract. Just push the capsules up there. They will disintegrate. Within one hour, the pain will go to about zero. Then eat 2 b4 bed, and 2 more vaginally, After that, eat 2-3 per day, and 2-3 vaginally (especially 2 b4 bedtime). Stools may get looser. Maintain at 1 to 2 per day per oriface. Must be refrigerated. Buy the 60 capsule bottle as it 's almost the same price as the 30 capsules. Not a cure, but insanely helpful. I've been on this stuff for 3 weeks. I was about to go crazy. I had tried everything over 5 yrs. Side effect: at 3 capsules/day vaginally, the vaginal fluid smells acidic. Almost like stale pee. But hey it was just a few days. After 3 weeks I still can't try new foods, as when I do, I must do a vanignal capsule to calm down my bladder, but I am not in pain after about 1 hr. Blessings, Mary
Replied By Catherine (Halifax, Nova Scotia) on 12/15/2011
I had bladder surgery (cysto) and that is how my IC was diagnosed. I have had it for approx 15 years. I recently had another bladder stretching and now am getting an implant to help control the spasms. I am a Grade 3 and have tried everything to control or maintain the pain from IC.Replied By Tracy B (Richmond) on 08/23/2015
It's interesting to read about The IUD then the bacterial infection followed by numerous yeast infections. Same thing happened for me in that order. I wonder if the IUD is the cause? Bummer cause I was probably the healthiest person in the world prior to developing IC.
Some information tho or hope for others going through this. I went to a Naturopath 2 months ago who found I had massive amounts of solvents (I work in automotive) in my body along with too much yeast. I started taking solvent removers and Unda 38/8 and after 1 week I quit having the symptoms of IC and have not had any in 2 months. I sleep through the night without having to go to the washroom and don't have the sudden OMG urges I used to.
IC is caused by something and once that "something" is removed, the bladder starts to heal. It's worth a shot!