Jen, you have come to the right place. Most people that see Matia and stick with her protocol end up having success. I think it's about 95% that get better. I say the odds are pretty good! I've been in treatment for almost 9 months now and I am much much much better. Most days I feel basically normal, it's wonderful! If there is any way you cen get out to LA to see her I know you wouldn't be dissapointed.

I'm sure birth control pills started my IC.  You were wise to get off them.  Try doctoring with Matia.  She helps loads of people.  She is very kind, patient, and understanding.  Maybe finding this site was a step in the right direction for you.

I agree.  Matia is great, I've been up and down, but mostly because I was stupid in the beginning.  My mom had IC for 35 years and was done with treatment in a year.  I would recommend starting list 1 for a month and then make an appt.

Jen- so glad you have decided to make the appointment! That is  great. I second everythign everyone else said. I totally believe in Dr Brizman's treatment. She is not a magician and this is a nasty disease but she is the best most comprehensive healer I have ever met.It seems like you have done all the research, reading and even treating that you can do and it has brought you here. You will be in good hands.
 
I am having a B day today (I have a scale g-good, ok, m-medium and b-bad) It is hard to stay positive on a B day but this is the first B day I have had in January!! I'd say that is pretty darn good considering this is January 29.
 
Welcome and best of luck!
 

Hey there, and hi everyone! Sorry I haven't been on for ages - good to see how everyone's doing (and deir! so thrilled you've had a good month - though sorry today's been bad). Quick update on my progress for anyone who's interested (sorry for thread hijack, jproffer!) - I've been doing, on the whole, really well. Had about a month and a half, from mid-November to the beginning of January, with only niggling symptoms (and many days symptom-free). Had a bit of a flare up mid-Jan with slightly more urge/irritation, but seems to be back under control after some herb adjustments (though diarrhoea is currently a bit of a problem, harrumph). But basically doing really good. When I look back at where I was this time last year, I'm thrilled.
 
All of which is to say, jproffer, that if it's feasible for you to see Matia, I'd highly recommend it. Echo what everyone's said about her compassion, and I'd add too that she's very calming, which helps a lot. Sounds to me from your reaction to the antibiotics that you absolutely fall within the ball park of her patients (I was prescribed abx when my IC started and was lucky enough to see a correlation immediately between me stopping taking them and feeling a bit better). I had constant urge and frequency when this started a year and a bit ago; now I go 3/4 times a day and only wake up to pee when I'm flaring. My vulvodynia is more or less gone. I have no pain in my bladder. I don't feel like everything is irritated after peeing. I still get periods of vague urge, and have a few remaining vaginal issues (mainly weird sensations on my cervix - itching/tickling and pressure, super odd!) but comparatively - honestly I can't tell you the difference. I could live like this now (though of course I want to get fully better, not least because I want another baby!) (I'm 34 by the way). I've only been in treatment since last May (so 9 months) but the difference is huge. I had lots of spots on my back at the beginning of treatment and they're clearing up too. My IBS is still a bit dodgy (as I said, diarrhoea is back since I've adjusted down my probiotics) but I've had that for years, so I imagine it'll be the hardest thing to solve.
Really hope you get your appt through soon! let us know how you're doing.

Hi Jen and welcome! I also agree with what everyone has posted! I am having my fair share of issues, currently having to take a break from all herbs to get some further blood work done!:( This itself is making me very anxious, as I was finally having some good progress, so very ready to get testing done and be able to focus my attention back on healing!  I am currently in my 10th month of treatment. It has been a rough road, but well worth it! I have never met a more companionate practitioner than Dr. B!
I too am 28 and was wanting to start a family, but as many others have posted, this has been put on hold until my body is in better health. I see you are a speech therapist, I am an occupational therapist.
To answer your question about rice flour, yes this is safe to use while in treatment, and if you can tolerate raw veggies that is fine, but steamed is okay as well.
Well, wishing you the best as you start treatment and hoping you have a speedy recovery!

Welcome to this community of immense support likw no other!  I will be 4 months into treatment with Dr. B on Feb 7th.  I started this IC 1 year ago yesterday, and it was the scariest, most debilitating medical issues I've ever had.  I believe that this was based on several key factors:  Being on Birth Control for 4 years after our son was born (due to heavy bleeding), major life changing situations from losing my job, having to foreclose on our home, going through my first nervous breakdown the night I was laid off from a company which I devoted 13 years to (it was my passion/my dream job), only to be thrown out on the street.  At the same time, my parents seperated and my siblings took sides.  I internalized all of this for 2 years, anger and depressing took over me.  This was too much for my body to handle.  I can go on an on but its too painful and its something which I truly believe led me to IC which I'm now trying to leave behind.  One day, after having two back to back operations (colonoscopy, then a cystoscopy which I learned I had endometriosis this past August), I was desperate, ready to end my life.  Thoughts of suicide NEVER crossed my mind, yet the pain was too much.  I prayed to God and he led me to Dr. B.  All I could think of was who would take care of my baby which I longed and fought hard to have?  I had just started acupuncture in September but she couldnt offer me a diet change.  My husband was at his wits end with dealing with me, I lost a year of my son's 4th year of life.  But I can tell you today, I really didnt think I would be alive this past Christmas.  I can proudly say, I owe everything to Dr. B.  She gave me my life back!!  Just a few minutes ago, my husband told me how much more calm I am.  I am in no way close to being cured. But in close to 4 months, I have changed who I am as a person, as a mom, as a wife.  I have alot further to go and am working towards every personal goal I want to achieve in 2012.  I still face anxiety issues, stress due to work (nasty, negative people which makes my IC worse) and family related issues is huge.  Just 5 minutes ago, my oldest brother called me (he never calls me) and I answered the phone... "is this bad news?"  He said 'yes'.  I told him I will NOT get involved.  This is huge for me to stand up to my eldest sibling!
But what Dr. B has taught me, perhaps has taught all of us, is that we come FIRST.  I still face sleep insomnia (I must have only slept 4-5 hours last night), I still get up 2-3 times to pee but the pain is only there when I have stress or anxiety.  I worked my tail off today getting ready for our son's 5th birthday party next Sat with hardly much sleep.  The herbs she has me on are finally settling in nicely and working like they should.  I still have discharge, IBS when I stress but its not to the magnitude from where I was when I first started. I didnt think I would be alive past 2011.  The point I'm trying to drive in is that Dr. B knows 110% what we are going through.  Why?  Because she had IC once long ago.  And she cared enough to devote her life to helping woman with this horrid illness.  So I happily will tell anyone who cares to listen how passionate I feel about Dr. B and what she has done for me in 4 months.  She literally has saved my life!  Just a few days ago, I had the pleasure of speaking with a young woman, Alena, who travelled from Prague to see her.  I am inspired by her courage to come alone to a foreign country with no support from family.  We were able to chat a long time over the phone and it felt wonderful to reach out to another IC patient.  It helped me to heal by merely speaking with someone who understands.  What a gift that was!  Unfortunately, Mrs A, Alena and a few of Mrs. A's family ended up with the tummy flu.  I was soo looking forward to having them over my home Friday night and meeting them in person.  It just wasnt meant to be but that is OK because I know this forum is filled with tremendous support.  I pray Alena got home safe.   She will get better and has her whole life ahead of her. 
I encourage you to not give up.  I still am paying off thousands of dollares in medical debt from last August, but I see this as a learning curve on where I was before and where I'm heading now.  I can tell you that this is a life changing journey in many ways.
I look forward to my next call with Dr. B this week.  I'm on List 3 yet trying new foods at my pace.  I tried asparagus (list 2 today) no flare!  small baby steps but its ok.  I am proud to say I've been sugar free since July.  wow!  My husband tells me he is proud of that, especially as I made my 1st ever batch of Star Wars cookies from scratch with icing for our son's birthday party.  I guess I dont crave it anymore.  I am finally being the mom I always wanted to be, right there for my only child, watching him grow and me living again.  But this time, treasuring life one moment at a time.
Take care and keep us posted on your journey.  Its not easy but it surely is worth it.
Wishing you the best,
Adriane

Boarshead meats do not have nitrites in them, but they are still processed meats.  If you are going to eat that type of thing, Boarshead is the lesser of the evils.
Sarah C - I read that you have problems with diarrhea.  I have had really loose stools for many years.  How much probiotics have you had to take to get rid of it.  I'm still struggling.

Faith is to do what you believe is right regardless of what others, i.e. coworkers, say. Honestly, until someone walks a mile in our shoes, they won't understand. I would discourage someone to fly across the country, let alone using alternative practitioner, if I didn't have IC. Most people cannot relate. They think objectively and pragmatically. We, on the other side, hang on the thread of Faith. Some see it materialize, some not, perhaps yet. You won't know until you try.
Btw, I learned not too share too much and not to discuss my challenges of achievements with others because everyone has an opinion, often without having a clue about the subject matter. The less I say the safer I feel about my treatment. 
No one other than my husband believes in what I am doing now. My best friend who has a PhD in Physics, who has been there for me through thick and thin, uses any opportunity to talk me out. I learned not to bring this topic up in conversation; thus, save our friendship. It was puzzling to me that someone so close doesn't understand the level of pain and despair this disease brings. She, btw, has a light for of IC, herself. But because hers is light, she cannot relate what I go through. Not her fault. 
IC can be a lonely place if not for faith. You don't have to have other's approval to follow your heart.
 
 
SarahC, I am thrilled to hear that you are doing well!
 

Maybe not enough people have IC to draw attention to the problem, I don't know.  They seem to have trouble getting enough money for research.  The ICA has been working to get the word out to doctors and the media.  They have been working at it for quite some time.  Also, I wanted to mention that before I decided to see Matia, I was very very apprehensive of doctoring with someone so far away and also taking a chance on yet another doctor who might not help or who was just going to be a drain on my bank account.  I researched her background carefully as I could at the time.  Then I talked to a few others who had been doctoring with her for a few months.  My friends and family thought I was crazy when I told them I was going to give her a try.  After I started with her, nobody in my family, except for my husband, was understanding of the herbs, diet, etc.  It has been a long road, but IC isn't a disease you get rid of over night.  I just wanted to tell you that I am not sorry I made the decision to doctor with Matia.  She knows the disease better than anyone I have been to, both conventional and alternative docs.  I also want to say that she is on the list of doctors that the ICA recommends (at least she was the last time I checked).  Put all of those doubters out of your mind and go with your gut instincts.  Your inner self will lead you in the right direction.  Just listen to it.

Oh, what I called mild IC is the following.
My friend has what she describes as immune defficiency to resist Strep A bacteria confirmed by tests.  Sounds almost familiar, right?
She does not believe in alternative medicine. She does to some degree, but she says that everything available in nature is accessible through synthetic fast acting replacements, i.e. pharmaceutical agents, so why bother. As a result of negative experiences, my friend is weary of doctors. Nonetheless, she believes in medication and she takes it quiet often. So far, no serious problems occurred, but who knows what awaits in the future. She deals with her bouts of increased symptoms (for example, when she sees blood in urine) by taking antibacterial agents long forgotten in the US. She also takes antibiotics if antibacterials fail to work right away. Her symptoms subside within hours then completely go away within a day. Important fact to highlight is that my friend never has to suffer for more than a few hours. She knows what medications she responds to and keeps it in her purse at all times. Sometimes her flairs start at work, sometimes on vacation. By using her knowledge in chemistry and biology, she pretty much self treated until it worked to her satisfaction. She knows it is not ideal, but that is the best it will be for her. I used to consider her lucky because she found her 'remedy'. Nothing worked for me until recentl improvements. She encouraged me to find that 'something' that will work for me so I may have productive life. I tried many things, but they brough serious pain and took away the quality of life I had prior. Go figure. 
 A short footnote, her husband had a stage 4 rare cancer and was given short time to live. She got involved after the original surgery turned into a failure because the surgeon mis-handled it. She did a lot of research, took her husband to the best surgeon and oncologist specializing in his type of tumor, and controlled the whole process intensely. Her husband lived, he is very active and happy now. That experience added confidence.
An additional detail is that her mother has had the same symptoms majority of her life. She is trying diffirent things, none of which firmly worked so far, but they improve her life.
Did I mention that my friend smokes and has no intention of quitting? As you can imagine, our conversation about healthy life style can easily get heated because my statements feel as targeted attack to her. I, on the other hand, developed a conviction that I am not about to change. She leans toward the opinion that genetics are the reason of all illnesses. Everything else is insagnificant. I don't believe that! But we are still friends! I respect her opinion and she tolerates mine. Plus, we have common health issues that only two of us can understand. 
ok, this was a detour from the original topic, but perhaps helpful information for someone.