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Hi, my name is Amanda. This is the first time that I have posted to a forum to discuss my IC.
I'm 27 years old and was diagnosed with IC about 5 years ago now, but have had IC symptoms for about the past 8-9 years.
I have tried numerous different treatment options, including: Bladder Installations, dozens of OAB medications, herbal remedies and had the InterStrim Implant Surgery done back in January 2014. I've also recently started going to a Pelvic Floor Therapist and have had four visits with her so far. Nothing seems to help.
I experienced great results with the Interstim during my almost two week trial period (wires attached to an outer pack), but ever since I received the implant, my symptoms are back to exactly the way they were before the trial.
I'm really at a loss. I don't know what else I can do and just can't imagine living the rest of my life this way. I feel hopeless. As it is now, I need to go every hour, but it's very unpredictable. I could have to go every 15 minutes for two hours at a time and then go back to every hour for the rest of the day.
I'm getting married in just under two weeks and am terrified of my symptoms during the ceremony, reception and during travel for my honeymoon.
This disease has made me an incredibly fearful and anxious person- something I never was before. I want my life back. I don't want to feel like I'm anchored to a restroom anymore. I'm willing to try just about anything at this point. Any insights on treatments that have worked for fellow IC sufferers would be greatly appreciated.
Welcome Amanda,
Welcome Amanda,
I, too, developed IC in my twenties- 13 years go. Most of us ICAMA ladies have done some level of Western Medicine investigation of "treatments" and have found -as you have- they are not a treatment and are fairly ineffective. I am three years into treatment and my bladder has healed tremendously......I didn't even understand the concept of a flare because I was in one, long, continual flare- the pain/ discomfort never abated. This treatment works but it is quite a lifestyle overhaul and yet- I can not imagine my life or that of my family's- any other way. I would recommend you ordering Dr Brizmans dissertation on Amazon as a starting point for understanding treatment.
There is much hope here- Again, welcome.
Katie
Dear Ellebee,
Dear Ellebee,
I know exactly how you feel because I began this IC journey just days before I got married. I broke out in hives literally days before the ceremoney. Everyone thought I was stressed about the wedding, but I wasn't stressed at all. It was so weird. The hives were so bad that I had to go on drugs to get rid of them. I got them on the honeymoon as well, So Scary for a new bride. Frequency (meaning peeing a lot or feeling like your peeing) didn't come till after we were married. Than I started to get nauseated and dizzy. I thought I was pregnant, but I wasn't. Than I started to pee a ton, and it didn't feel good. But I didn't have bladder infection. I went to several doctors, who gave me all kinds of drugs for all the different symptons. Nothing worked, and it made the frequency worse. I couldn"t run or hike, I had no energy, super weepy like crying all the time, and was very anxious. I wanted to have kids, but how could i have children feeling as awful as I did. I was getting really scared, and thinking I was crazy. No doctor could help me. My Mom has IC as well, and she began to notice that my symptoms resembled what could be IC.
So my Mom advised me to go to her doctor named, Dr. Matia Brizman. Her alternative medical office is called Bomamed, and is located in LA. So my husband and I drove down to LA to meet her.. Her and her husband specialize in this diseae. I told her all my symptoms, and for the firs timet a doctor did not look at me like I was insane. She spent a whole hour with me, which blew me away because all the western medical doctors could barely spend 15 minutes with me. She helped me so much.
Too make a long story short. I have been with her for 2 years now, and am now almost fully recovered, and have got my life back. I can run, hike, and i have no more tears, and my energy is awesome. I am on the road to start a famlly, which was just dream when I got this disease because I never thought I could try to have kids being so sick and all.
My advice to you my dear is get in touch with Dr. Brizman or go on Bomamed.com, and get their phone number and make an appointment. They will help you so much. This alternative medicine approach was an answer to prayer. On this Icama sight as well they have diet plans. Start list one! Dr. Brizman will most likely start you on that, and get you probiotics, but I'd wait for them to tell you what to take.. Get off all sugars, dairy, gluten, and soy etc. Just look at the food on list 1, and only eat what's on it. When I first went to Dr. Brizman I was already off sugar. gluten, and absolutely no alcohol because the alcohol really sets it off. Just starting the diet helped me so much.
I know you're at the end your rope, but you have found the best site, which is full of information that can help you until you become a patient of Dr. Brizman. Please get in contact with them. You will get your life back! I know that feeling if being anchored to the restroom, and living in fear and anxiety of never going to get better. You will get better! I used to be just like you, and now I rarely think of going to bathroom unless i have too much coffee :D. Prayers going your way!
-Abbie
Abbie,
Abbie,
Thank you for your response- I do appreciate it!
I live on the east coast- so going to the actual facility is out for me. I'm sure you understand how insane travel can seem with IC. The books and reaching out seem like a great option though.
I've researched a ton on IC, but have never really come across anything about gluten or dairy- could you elaborate on this? I do already stay away from soy, artificial sweeteners, acidic foods, etc...
Also- I don't know that I could stop taking my bc. I read up on this and the hormones effecting IC, but stopping doesn't quite seem like an option at this point in my life. I will speak to my doctor though and see about other alternatives besides just condoms and spermicides.
Thank you again!
Hi! keep reading on this site
Hi! keep reading on this site if it interests you. Many of us have flown from the East Coast or even Europe and Australia. If healing naturally in this way seems appealing, keep reading!
Best of luck!
Hi Amanda!
Hi Amanda!
I just wanted to say that I also live on the East Coast, so when I called BomaMed and was told that I would have to see Dr. Boaz Brizman in person for the first appointment due to California state law, I almost cried because traveling that far seemed out of the question for so many reasons. But after nearly four years of fighting this condition and finding no answers (and very little compassion) from traditional Western medicine, I felt like I couldn't give up on this option, which had cast a ray of hope into my life of darkness and despair that I would have to live like this forever. My husband was 100% supportive of my decision to pursue this new method of treatment (I've been married for a year and a half now, and it has so negatively affected our ability to be physically intimate that I think we were both willing to try anything), so I made an appointment and flew out to Los Angeles last month.
The first thing Boaz did (having read the detailed history I'd previously sent him via the online new patient form) was to assure me that I would get better. I cannot tell you how hard it was for me to hold back from bursting into sobs right then and there (although my eyes did tear up and I could barely speak for a few minutes). By the end of the appointment, I was confident that this was the place I needed to be - that under the compassionate guidance and instruction of these people, I could eventually get my life back. It's been only a month, but I am still just as confident.
I guess all I'm trying to say is this: I know the hell you're going through physically (never mind emotionally and psycologically), and I wouldn't wish it on my worst enemy, so please just know that a fellow East Coaster did manage to fly across the country and has not regretted it for a second!!
All the hugs in the world going out to you!!
Sarah
I agree with kati, Amanda.
I agree with kati, Amanda. This is a total lifestyle change, but the rewards of it are awesome! I never felt better, and I have learned so much about food and a healthy lifestyle. My husband is benefiting from it. He has a healthy wife, and also he eats healthier as well.
-Abbie
Another thing that I didn't
Another thing that I didn't mention is that Dr. Brizman will tell you to go off any birth conrtol. This is another huge enemy of IC. I know this is crazy to tell you go go off since you're getting married in like two weeks, but just to give you heads up they will ask you go off it because you will not recover if you do not. So ya sorry if this is overwhelming you. There is lot of to learn in going in this method. But like I said it worked for me.
-Abbie
Amanda, you only have to go
Amanda, you only have to go once to LA to meet with the Dr. I went from GA. it really wasn't that bad of a flight, a little over 4 hours. As for birthcontrol... I have been married for 23 years and have only used the rhythm method and withdrawel, both have worked very well for me. I never tried to get better with conventional medicine because I knew there was no getting better that way. After three years in treatment I can honestly say I hardly ever think about my bladder, but I do think about how my life has changed for the better and how I do realize how important what we put on and into our bodies is. If you want to get better, this is the way.
Hi Amanda,
Hi Amanda,
If you click on the upper tab of integrated aproach you will find the diet there. Like others have said - start with list one.
You need to drink just spring water, discontinue sugar, alcohol, soy, fermented anything, vinegar, mushrooms, blue cheese, peanutbutter - to mention some of the big no no's.
When I first found this site, there was no way in hell I was going to get on a plane and go to some LA Eastern Medical quack - my Dad had raised no fool. However, I spent weeks being drawn back to this site "stalking" the people and Dr. Matia's words. The sense of having found something pretty damned special was stronger than anything that I"ve felt in my life. In painful desperation I tried out the diet - for me the relief was instantaneous. I also stalked the site for glimmers of what her patients were taking - I can't recommend this to you as others who have done this ended up causing harm to themselves. However, for me, when all this strange icky stuff started pouring out of all orifices, I was fast becoming a believer. I even tried buying some herbs through this site - this was where I was "caught". It turns out that these supplements can't be bought without being seen by one of the Brizmans. So, feeling like a damned fool, I booked my trip. I actually drove out to the office the night before my appt. I wouldn't have been surprised if it didn't exist and my credit card payment was being used to give some internet creep some drug money. However, this was not the case and I will never regret that plane ride.
Take Care,
Amanda,
Amanda,
I also live on the East Coast. I did traditional western IC treatment for over 10 years and was functioning just fine. Then my body just couldn't sustain it anymore and everything crumbled, because the meds I was taking were only masking the pain, not taking care of the CAUSE of the pain.
I know this all feels like the biggest interruption in your life and to your plans, and it is. I know this all too well. But the sooner you start getting your immune system healthy, the sooner this will all go away. And the docs at Bomamed know how to help you make that happen.
One more thing, if you try to
One more thing, if you try to get your immune system healthy through a different program, you will probably end up hurting yourself more. Our bodies are so out of balance that it takes very careful manuevering to do this the right way without upsetting things even more. I don't know anyone out there who understands this like the Brizman's do.
Hi Amanda, welcome. Ive been
Hi Amanda, welcome. Ive been with Dr Brizman for nearly a year now and its the best thing i have ever done. Complete lifestyle overhaul it is, but this treatment teaches you so much about why and how we get IC and it I am well on my way to being healed. in eight months i would say i feel 60% better and my life is so different to what it was when I sterted. I was not a severe case, but bad enough and I travelled all the way from Australia to see Dr B. Best.Move.Ever. I cant tell you enough that you have found the answer to you pain right here.Get on that plane and go! you only need that first appointment then you're able to do long distance for the rest of the treatment. I was very skeptical at first of everything about this treatment and worried that they werent even real but everything that is written in these forums is real and honest and full of positive stories and healing. Good luck to you my dear xxx
Amanda
Dear Amanda,
Dear Amanda,
In reading your post it looked like most of your treatments tartgeted the bladder. If you can, after the wedding, download Matia's dissertation and read it. She targets the intestines. Her premise is that there had been a breakdown of the intestinal barrier that keeps the bad micorbes from leaking into the body and lymph system. This break down is caused by chemicals like anti biotics, birth control and processed foods, hair dyes etc. that we use without any awareness of the consequences. The bladder has recieved small anounts of these bad micorbes over the years and compromised the bladder lining. The trick is to heal the intestines.
On a practical level I would suggest immediatedly reading and following her diet number 1 which is on this website. No sugar, no sugar subs etc. And if you have time order prelief from amazon.com. Simple pills that are made from calcium and magnesium. That's it. Take several before each meal. It serves to remove the acid from your food and thus from burning your bladder. Matia will take you off of these eventually as your body needs to do it without them but for now it will help. I got immediate relief from this although it was still there I was able to walk and talk and sit without agony and I was able to be with others without the constant worry. I hope it will help you with your wedding. You have found a place that will return you to health, whole body health so rejoice in that. You don't have to look further to doctors that can't help and use medicine and methods that constanly let you down. How do I know? I was there in my urologists office when he said there was nothing he could do and that the side effects of the medicine were worse that the disease. I found that hard to believe, but its' true. And now after a year and a half with Matia I can sit through a movie, go shopping, and all I have is urgency, no burning. I'm working on that alot. It's just not a magic pill way, it takes time. So be patient and know you will get better. soon. Love and joy to you on you wedding day. Julie
Dear Amanda,
Dear Amanda,
I did not have all the symptoms that follow, but bear with me and read on. I WISH someone had told me when I was in my early 20s, that painful periods were not normal. Common, but NOT NORMAL. That acne and excema and psoriasis and rosacea are NOT NORMAL. That constipation or diarhea or heartburn or ear infections or sinus infections or recurrent bouts of strep throat, bronchitis, or skipped heartbeats, or yeast infections after sex, or bladder infections are common, but NOT normal. That sugar cravings, feeling grumpy and irritable and super hungry before meals are NOT normal. That low grade anxiety or obsessive, recurrent thoughts are NOT normal (and a sign of GI imbalance). That vegetarian diets deplete the body of nutrients and change the balance of flora in your intestines creating conditions for IC. That chemical birth control dries out ALL THE MUCOSAL tissue in your body, laying the foundation for gut disbyosis (imbalance of flora) and ultimately a leaky gut and any number of auto-immune conditions including IC. That antibiotics, even topical, cause the normal yeast in your body to go haywire creating firther imbalance and symptoms. Having even one or two things on that list can mean you are headed for a life of chronic illness. I wish someone told me that the health wispers I had in my early 20s would lead to endometriosis, difficulty in getting and staying pregnant, chronic back and joint pain, early and unexplained perimenopause and then eventually IC that broke like a damn one day and turned my life upsidedown and stopped it cold. Many, many people are trying to self-heal their IC, or they have signed up for 3- 6 western drugs with a miriad of side effects and no hope for true healing of their IC. Here there is another choice, another chance at full and vibrant health, NOT a masking of symptoms
I have been in treatment for 18 months and my life has done a 180. For much of the month I have low or no bladder sx unless we are doing heavy cleansing. The body heals in layers and takes time to restore to balance. By the time you have bladder pain, you have a GI tract that needs repair, plus deep nutritional deficiencies so it takes time. Being young you have an excellent chance to reverse this before it effects your fertility or your chances of having a family (if that is what you want) and being a productive member of society. When my urologist told me that she and her top urologist colleagues scratch their heads at conferences when they talk about IC jI knew I was in trouble with a western approach. Thankfully I had successfully used Chinese Medicine for painful periods in my 20s, and also for fertility issues in my 30s so it was one of the first things I thought of when I got sick. And thankfully people in treatment here or who had finished treatment REACHED OUT to me to share their story and give me hope.
I hope you buy and read the book Taking Charge of your Fertility by Toni Weschler. This is a MUST read for young women. You do NOT have to take chemical birth control and change your own body chemistry in profound ways. Why must the health burden of controlling fertility be placed solely on the woman in a relationship? This book will show you how to safely plan or avoid starting a family, without the need for birth control. I have seen too many of my friends end up with all kinds of health conditions from birth control, even the supposed "low-dose" and yet doctors still hand it out like candy. It is not normal to suppress the body's regular functions in such a way. You take chem birth control, but there is a price to pay and that price is seriously compromising your health. Many of my friends on BC have profound regrets about this choice later. Not to mention, vulvadynia, a painful vaginal condition is much more likely to occur with IC when one has a history of chemical birthcontrol. For your future, please reconsider and read Taking Charge of your Fertility. Don't let doctors do it for you. It is your body, your life.
Finally, if you decide you want to treat your body holiistically and restore it to health, you can absolutely find a way to come to California for ONE visit with these doctors. I can guarantee you it will be among the best decisions you ever make. Many young women of limited financial means have made the trip and regained their health.
If we don't excel at health, the only other option is disease.