Forums:
I guess i should start by saying how grateful I am for Matia and this website. AND hello to all of you either with or recovering from IC. I have been with Matia for over 5 months now, and can say that I'm feeling a bit, bit better (so grateful for that) BUT as many of you probably understand there is still an overwhelming amout of fear that comes with IC. I have read most of the success stories, and it is difficult finding one that matches (even though i know I'm not supposed to compare). My main symptom is intense bladder burning. I can hardly tolerate any foods or herbs without feeling like someone poured acid in there. I guess, simply put, I was just wondering if there was anyone out there that is/was like me. If anyone with intense bladder burning, anyone who could hardly tolerate any herbs, has gotten better? A little hope would go a long way. Just thought I'd reach out.
Thanks to all who are reading,
M
Not the same, but understand fear
I understand what you are going through. I have been a patient for almost 3 mths now and get very scared when I don't see much change. My symptoms though are blader pain in the sense that I can feel it when I'm walking, sitting and then I feel like I have a bowling ball between my legs by the end of the day, that is when my pain is the worst is toward afternood and end of the day. Even my bottom will hurt! Do you ever have that heavy bowling ball feeling? I read the success stories a lot too and have a couple great people that have been through the program successfully that help cheer me on. I wish I could understand better why some it works so quickly, or notice changes so quickly and some us don't. I wish we all knew that our day of success was coming soon! I just wanted you to know that I understand your fear, especially when I am in a flair! Hope you are feeling better soon so you can be one of the success stories others read for their support.Hang in there -Ditto
Hang in there and communicate
Hi - I haven't posted a lot on this, but I want to help you (and others) know that this is a temporary and short-term issue. Do NOT be scared.
Yes, I had an incredible amount of pain. More than I think I could ever explain to people. Funny thing is, I am going on two years without any IC symptoms - so, at this point, I am reading your descriptions and saying, "oh yeah..."
I have completely forgotten that pain and how to describe it. When people ask what I went through, I struggle to explain or come up with terms that you all have at your fingertips (and I'm sorry for that).
Here's the deal, though. You need to communicate your symptoms in detail to Matia. You need to log details about you have been doing/eating/drinking as things that you don't think are related, very well may be.
There will be an inflection point where things start to change (positively) rapidly for you. In the meantime, the more you pay attention, communicate with Matia, and then make changes in your life (temporary changes BTW) and do "the work," the more likely it will be that you reach the next level quickly.
Hi All: I am so greatful for
Hi All:
I am so greatful for this site. It helps to read others stories. Symptoms might be the same or different but it seems that the emotions are all similar. So even if I can't find someone with the exact same story, I do find others stories helpful to read in terms of knowing that others had struggles along the way. It helps me to know that this is normal. It helps me to continue on this path.
I was diagnosed in January, 2008. I was taking the UR drugs. I tried other Naturopaths. I made the trip to see Matia about 1 month ago so I am very new to the protocol. I am having a bit of a difficult time right now with the supplements so having been switching things around with Matia's direction. I thank God for her patience. I am always happy to speak with her with all my symptoms because she can put my mind at ease. I have had so many other symptoms besides the bladder such as fluid in my ears, blurry eyes(even though I have had them checked twice and been told I have 20/20 eyesight), inflammation in my left side of back which has been painful... My main bladder symptoms is frequent urination especially at night with some burning.
I do plan to do the "work" because I so desperately want to feel "normal" again. I do feel healthier and I have been told that I look better and healthier. I do fall asleep in between going to the bathroom every 1.5 hours (before did not feel that I could go into a deep sleep). I have to keep looking at all the little steps I have taken towards better health to keep me going. I am also thankful for all of you that share because as I said before that keeps me motivated and hopeful.
Kriste
I had burning when I ate
I had burning when I ate anything acidic, like lemons or vinegar no matter what amount. It has been a year and a half and I still can not eat it directly, but I have no problem with it in recipes. I can eat an orange again, but still can not just drink the juice. Overall, that is a huge improvement for me and I'm willing to give it more time and take the small victory.
Fear
I tried to put a new comment in yesterday, so I hope this doesn't show up twice I didn't see it yet though. I have been in treatment over 4 months now. It is helpful to hear any and all stories out there of peoples success and/or treatment progress. Just to know that others are going through the same thing and are seeeing improvement makes one feel not so alone. This,by the way, is a very lonely disease. It is also a disease that robs. In a reletively short amount of time it has robbed me of my marriage, quality time with my daughter, my job, and the plain enjoyment of everyday life! Pain can do awful things. I would love to hear if anybody else ever has, or had, the feeling that they were packing around a bowling ball, intense heaviness and that more than just their bladder is effected or not right, like their lower GI tract is too. Mornings are always best for me, by late day my symptoms are intense. My fear is that this is never going to end. Everyday I get up I pray that today is different than yesterday. That my symptoms are less, that my immune system will begin to work.
Any comments would be greatly appreciated.
Thanks,
B
Hang in there
I have been in treatment for almost 3 1/2 years. That may sound like a long time, especially when you are just starting out but when I look back I am truly grateful to have found Matia and to be back on the road to good health. The beginning is very hard but hang in there. My improvement was very gradual so that I wouldn't notice a difference day to day but when those negative feelings would start creeping in, I would look back at how I felt 6 months ago, or 1 year ago and realize that I was improving. I would cling to those realizations of improvement and that helped me to stay positive. Matia will help guide you to better health, better days are in your future.
Thank you Sydney
Sydney,
Thank you so much for the response. Just hearing that others had similar symptoms and are soooo much better is so encouraging - I am always afraid that Matia is going to get upset and give up on me when I am so scared since I haven't seen the movement others speak of at 4 months. I know her treatment works though I read it over and over from people like you so I know it has to work for me. I just wanted to thank you for your response, it means a lot right now.
Sincerely,
Brenda
Sugar
I am new to the site and have only been seeing Matia for month or so. I was wondering if anyone has had trouble with sugar withdrawals. It is very hard...I did not realize how addicted I was until I had to give it up and so far I have not been completely successful (to say the least). I tend to be the kind of person who just sucks it up and does it, but the stress of the IC and having to give up what calmed me in the past has proven to be difficult. The IC is just really hard.
Any hints would be helpful.
Thanks
Sugar
Hello Cassandra. I have been in treatment with Dr Brizman for about 2 1/2 years now. Since the day I started treatment I have not eaten 1 grain of sugar or anything containing sugar. It took me about 3 months to get over this toxin (before IC I was addicted to chocolate, muffins and cookies). I do not ever want to eat sugar again. Today I have a new life, my bladder feels better and I feel healthy. Do not touch the sugar, it is not worth it! You can do it :) Be strong! Angela Harrison.
How do I make an appt for a consult
Hi, I have spent a long agonising year deciding whether to give Matia a go having been diagnosed with IC for over a year now. I have now come to the conclusion that she may be my last chance for a better quality of life. My big question is how do I contact her clinic. I live in Brisbane Australia and I can't find a contact phone number. Can anyone please help with Advice on how to contact her.
Thanks
For Greta
Hello Greta, You can contact Her office. The phone number is 310-231-3300. Angela.
For Angela
Does she have a direct website, as I don't quite know the time difference from Brisbane, Australia.
website
www.icaroadtorecovery.com
read it, be informed, be encouraged. try the diet--I jumped on it and started it even before I began with Matia. I had been placed on so many different diets for this or that ailment, I was relieved to finally be on the right one. see if the diet helps any
For Greta
I was diagnosed in January this year and I too agonized over going to see Matia as I live in Canada. I also felt like it was my last choice. I went there about 6 weeks ago and never for 1 second regretted my decision. I am already seeing improvements although I know that I have a long way to go but every little improvement gives me hope. It has not been smooth sailing but I have a better understanding of what is going on with me due to Matia. Last month was the first month in my whole life that I did not have to take any pills for my menstruation pain. I did have pain but it was tolerable and a little heat helped me to get through the worst part. I also have had some nights that I have slept a 4 hour stretch. A little while ago I was up every hour to go to the bathroom and also keeping the heat close for comfort. I have not been bringing the heat to bed for a couple of weeks. I went for a 12 km hike last week with my son and daughter, I went on our version of the subway last week. These are things that I was afraid to do because there are not washrooms available. There have also been down times such as trying to find the right combination of herbs and supplements that I would not react to but with Matia's patience we figured out the right combination for now. Maybe when we change again I will react but I know that Matia will be there to help. When I was reacting I was so worried about bothering Matia but she always responded to my emails. All in all this is so far been a good experience. I probably am going to have more bumps along the way but having hope will get me through those bumps. I am on list 2 of foods and have reacted to some but also have been able to add a few. Good luck to you Greta
Kristeen
Thankyou
Thankyou for sharing your experience with me. I find it hard to acknowledge what I have even after 14 months and a diagnoses. What makes it even harder is that I am not allowed to discuss this anymore with my husband, as he puts it "He is sick of hearing about it". I do not like burdening my friends even though they are wonderful and do ask how I am, I quickly change the subject as I am conscious about boring them. This is the first time I have spoken in a forum as I can't bring myself to let this disease become real even though I am suffering some pain every day. I am hoping this is just one big nightmare. I have travelled my own journey with this, as yet I have not found my missing piece of the puzzle. I am highly allergic to so much food and supplements, that at times I think I am lucky to still be breathing, as I think at times I am living on air. I have lost so much weight due to this, that I am embarrassed to look in the mirror. At times I think hell maybe more fun.
so once again thankyou for sharing your story, I wish you all the best.
Greta
I am really sorry your husband is unable to understand what you are going through. I'm lucky my husband is sympathetic but I think its taken a while for him to understand how bad it is and only after I'd sunk very low. Other people like my mum are unsympathetic and a bit indifferent really, all she thinks is "what do I tell people?" when I can't attend family events. Other relatives don't seem to take it seriously and behave as if it's an invisible problem. Maybe I'm hard to please because I hate all the "Are u better?"
If we had a more common illness which they could understand (and had heard of) things would be different and we'd get more understanding. There's some good stuff written by Matia's past patients on www.icaroadtorecovery.com/
From my own experience I would say I have learnt to look forward and not back and also to focus on the recovery and not the illness. I've got to this stage only after going thru an angry phase and a grieving phase (with lots of crying) so I know it isn't easy.
Have u read any IC books? I can recommend some if you haven't come across any. Best wishes.
For Jane
Thankyou for sharing your experience with me.
I have read catherine Simmones book a "road to recovery" and have tried to follow her reccomendations, but I didn't see any huge change. I was under a very sympathetic Urologist in New Zealand before I moved to Australia and the bladder instillations were not pleasant or very helpful. I have never tried Antibiotic treatment and never plan to as my biggest problem has been yeast in my system.
I am at the stage where I need to get my life back on track, as this has robbed me of my chance to have more children.
Thanks
Greta
Greta,
I think you may be confused. Cathrine simone wrote along the healing path and although that book lets you know your not alone it is not really a place for answers.
The link Jane sent you was for Matia's sucess stories and diet protocall. It also has intrerviews with Matia. Go check out http://www.icaroadtorecovery.com/
The thing you may try for your face is the natren probiotic masks. I would call Boma med and make yourself and appointmet asap. check out the links section in this website it has the phone number to make your appointment I think it is also in the above post.
Know that you are not alone and your path to recovery is obtainable.
Sending healing thoughts
Nicole
For M (Similiar symptoms)
Hi I was just reading your blog about your symptoms, and mine are very identical. I am very limited as to what i can eat, and as a result I lost about 23kg. when I am lucky enough to have no burning I suffer from intense urethral pain, and around the time my period is due or ovulation I can have days of bladder burning with no let up.
I hope this helps to let you know you are not alone.
dryness
I am just wondering if anyonne has or had problems with dry scalp and what they did to cope with that. My scalp and eyelids are so dry that they are raw. I know that I have to heal from within but in the meantime the skin is very raw. It hurts to shampoo and also to wash my face with soap. I have used jojoba and the Bomasense lotion on my eyelids but that is not helping. Any suggestions would be appreciated.