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I have suffered debilitating pain in my bladder and vagina for about 6 years. These past months have been by far the worst. I have lost my career and my marriage has been jeopardized.
Of course I have seen a dozen doctors with the most recent telling me I need some barbaric vaginal surgery that will have me recovering for two to three months.
This sent me into absolute despair, plus the doctor has no solid concept of what the origin of my pain is so the surgery could be a failure.
This site had been recommended to me by a great friend and client of Dr. Brizman. She has had decent success but is confident in her progress.
So Saturday began my journey to eat only list 1. I have to say, I have never been more ill in a different way than I have ever been before. I am sweaty. I am itchy. I am fidgety. I am nauseated. I can't sleep because my muscles are tight and sore. I feel like I have the flu but I have no idea what my body needs to feel better.
Can anyone please help me to understand if I am trying too much too fast? To go from a sugar, bread loving fool to a veggie only diet... Is this dangerous? How can I get some relief from what I believe is the die-off toxins? How long can I expect for this to last?
I appreciate your thoughts and kindness as I lay on my couch watching the Price is Right with a puke bucket at my feet. :)
Die Off
Erin, I am new in treatment with Dr. Brizman. My advice would be to order Matia's dissertaion. Then I would read Matia's blogs. It will give you a really good idea as to what is going on with your body. Also, there have been several women in the forums that had die off symptoms right away. If you follow them on-line, you can read there progress. Often, they end up on the boards less and less as their symptoms decrease. They get busy living their lives again and only ask questions from time to time. The diet is one third veggies, one third protein, and one third carbs. It isn't bad once you get used to it. It is important that you have a qualified person guiding you through this process as th diet alone will not help you fully recovery from IC. The goal is to add foods back into your diet as your body recovers. I hope you can start treatment with Matia. We have a suport meeting this Saturday. Maybe you can call Lyn and get permission to join by phone. Glad you found Matia.
response to veryhappy mom
I appreciate your words.
I live in Colorado and I can not afford to travel to meet with her in person or afford the cost of any ongoing treatment from her. I have read Dr. Brizman's dissertation and for the past four days have been following list one in terms of portions.
I have been surprised at how significantly better my vagina feels but at the same time I feel overcome with weakness and sweating and exhaustion. I was just searching for some tips as to how to relieve those symptoms.
Thanks.
Die Off
Erin, Your symptoms should wax and wane. Even staying off of sugar should make a big difference in your health. Regarding the cost of treatment, I would advise to exhaust all options. When I started treatment, my husband was unemployed and I was not able to work due to IC. I talked about Mataia to my entire family and prayed like crazy. We had to make huge adjustmetns in our life in order for me to start treatment. Many people get cheap arline tickets and see Matia and leave the same day. I am spending about $200 a month. I think that the cost of herbs and probiotics can be much higher if your need appointmetns or herb changes in one month. Some people are able to find significant relief in 6 months to a year. Glad to hear that you are feeling improvement
Die off's
Erin;I would think if you are used to eating a lot of sugar and carbs that just quitting them like that and eating all the veggies, you will most certainly get die off symptoms from yeast being killed off. Go slowly with the diet. Quit the sugar, but add in a small amount of starch, like potatoes or something. Your body needs a little starch.
Starch
Erin, Definitely eat starch. I agree with clueless. Cut the sugar and go on the diet slowly if you are having problems. The diet is pretty balanced with the exception of orange vegetables, which are sweet. Matia's philosophy is that your body needs to get rid of the yeat overgrowth before she can add sweet food back inot your diet. Temporarily going off these food should also help with your pain and inflammation The flu is going around. I hope youare feeling better today Hugs.
Glad you found the site
And I think it's good advice to keep the starch in, be a little gentler with the diet, maybe a little more gradual with taking things out. I don't think there is any other way to avoid die-off. Sometimes we have to just go through it, no way around it. I had a lot of die-off in the beginning of treatment, would get sick with flu and things like that. Almost 6 months in, I still get bouts of stuff, like recently I got conjunctivitis pretty bad, my eyes oozing and red for a couple of weeks. Yuck!If there is ANY way you can come up with the money to get started with Matia, it will be the investment of a lifetime. I know Matia well, I've been through treatment with her once before this time, 7 years ago (went back to old habits, and 2 babies and IC presented again) and I can truly say there is no other way for me, because I tried EVERYTHING the first time before I found Matia, after stuggling with IC on and off for 10 years before that. I know it can be so hard financially; perhaps friends and family would be willing to put together a fund through donations. Just a thought. Meanwhile sounds like your healing journey (and healing crisis!) is well under way, and I think a seed has been planted just by you coming to the site and you will get to Matia one way or another.
Thanks for the kind words
I am significantly better today.
I think I can be so type A and I want to be careful not to overtreat myself. It is also no use to be so sick.
Within a week I have gone from my darkest place to a place of hope. It is all very overwhelming.
die-off
Hi Erin! So glad you found the website. I've been in treatment for 6 months and i've improved a lot. So die-off...it's extremely uncomfortable, but there really is no way around it. your body is getting rid of all the crap and in the process producing very uncomfortable symptoms like flu, itchiness, breakouts, etc. I had die off SO bad right from the start, almost instantly. Matia said it was my "crisis point" and that some people have it in the beginning, others in the end, maybe others not at all. I felt awful, was all over the map mood-wise (crying, yelling, miserable), had flu stuff, particularly chills and really sore throat, yeast infection-like discomfort, headaches, horrible jaw ache. you name it i've probably had it as die-off. I would like to tell you it passes quickly but mine really stuck around. I was so exhausted I could hardly get up and move around but got up everyday for work anyways and pushed through. It wasn't fun, but it was necessary. It will get better, or at least come and go and won't be as intense. Plus, symptoms can also change. For instance, nowadays my hair has been falling out my scalp peeling, and i am itchy on my shoulderblades and get nausea and severe heartburn. FUN! My point is, this is a good thing. I don't think you can "overtreat yourself" just by going on the diet, in fact, it will only do good things for you. It may not feel like those symptoms are a good thing, but believe me, they are! Unfortunately there is no cure for these ailments and you have to just power through and remember that it's not permanent, eventually you will feel better! I got so much better on the diet alone until I could see Matia so don't give up now! When you can afford to see her having been on the diet will put you ahead. And like everyone else already said, find any means possible to find the money. I am truly poor and scraping by but found help for the first appointment and it was so very worth it. all my current income goes into treatment and good food, but it is the best thing I've ever spent money on. upsetting to have nothing left over, but it won't always be like this... and there is nothing more important than your health and subsequent happiness!
Thanks wcorisa
I appreciate the information. I felt better yesterday but had some potato and today woke up stiff and sore. It was a reminder of how I have lived for so many years.
Now that I have some sense that I have probably been suffering from yeast overgrowth, I have looked into specialists here in Denver.
yeast die off
For the past year I have been trying to follow the Candida diet. Yeast and sugar free. The symptoms you described are exactly what I would have the first 10 days of following the diet. Then about 14-18 days in, I wake up feeling much much better..except my bladder. The problem, is I would always cave and start eating crap again around 3 weeks in. I started Matias diet a few weeks back and everything was worse again, just like you say. I started feeling better a few days ago, but not my bladder yet. I know that will take a long while. The diet is one of the hardest things I have ever done. It is sooo hard to stick to once you are feeling a little better and have the thoughts that "I can have a little" then it starts me in a whirl wind of breads, sugars, and fries. So, Yes, I believe this is normal to feel so bad at first. I posted something similar when I started. For me, when I feed myself sugar, my bladder symtpoms improve after I have been following a sugar free diet for a while. That confirms I have a yeast problem and the yeast/bacteria make my bladder pissed when they want to be fed.
still sticking it out...
I seem to be doing well. I am eating non stop to try and keep my energy stable. I just can not get over how well my body has responded with such a significant change in my overall muscle pain.
I have also been soaking in raw apple cider vinegar baths and using virgin coconut oil on my v to sooth. For about 10 minutes after I am essentially pain free?!
I have two referrals locally so I can get some guidance.
What a journey!
Cocunut oil
Erin, You might want to type coconut oil in the search section as it often flares IC. Olive oil or Jojaba Oil should work well on your personal area. Regarding finding a local healthcare provider, please make sure they are an expert on IC. Hopefully, they even have several patients who have recovered from IC that you can talk to. Many pracitcioners are generalists and are not experienced in treating IC. Several women on this site used local healthcare providers and lost precious time recovering from IC. I wish you all the best. I am so glad to hear that you are feeling better.
Erin
I want to second what Sharon said- Please find a practitioner who has been successful helping IC patients-and who has EXTENSIVE EXPERIENCE AND SUCCESS treating them. I cannot stress to you how important this can be. I realize now that I was one of those patients who wasted time and $$$ on trying to treat with someone locally. Now the guy I found to treat with was a good doctor but just not I realized expereinced with IC - If he was then he would not have chosen the things he did. ( my costs with the local naturapath ( excepting the flight out to LA) are the same as what I spend with Matia- honestly sometimes Bomamed's costs are less than what I was spending on all those homeopathic tinctures! I'm on less medicines than what he had given me too! When I started treatment with my naturapath who had helped me before and who had helped many people I knew overcome their candida issues and other chronic illnesses- my Ic was relatively mild and under control. I sought him out to help me resolve what I thought was a lingering yeast issue causing the IC. I knew for sure that yeast was at the bottom of my problem. It turns out IC is more complicated than just "yeast" and the process of treating someone with IC even with someone experienced is quite a challenge! I'm not saying this to acquire Matia a new patient- I'm saying this cause I wish someone had told me before I wasted almost a year of treating with thsi guy only to get deeply worse. I have spent the last year undoing the inflammation from cleansing so hard so fast at first on top of the die off and all the toxicitiy coming out of me. My naturapath treated me as someone who had a candida yeast problem not realizing that someone with IC should not be exposed to some of the foods and herbs he had me on. I developed a severe inflammation and what was an annoying chronic waxing and waning but managable case of IC turned into a hellish 24 hour 7 days and week situation of intolerable pain. I had no idea exactly how sick I was until I was in the middle of treatment and all the crap was getting stirred up! I have gotten great releif with jojoba oil applied to the pelvis and vaginal area at nightime - It's very soothing to my tissues! I wish you profound healing and for you to find an affordable and successful local or accessible practitioner. I would love to hear about successful practitioners of bringing IC patients back to wellness. The more resources available to folks the better! Gppd luck and I hope this doesn't sound like some preachy lecture- I just know about this all too well. I'm glad the diet is making a difference for you! It can be really scary but it is possible to get well. Thanks for writing in- for sharing and for reading. peace be with you! Mary
I just wanted to add to
I just wanted to add to others' comments something that for some reason stuck in my head a while back, and definitely deeply influenced my choices, and saved my life: someone on www.icaroadtorecovery.com wrote that after a long and hard search she figured for herself that Matia is the ONLY DOCTOR IN ENGLISH SPEAKING WORLD who truly knows how to deal with this horror. And every time I looked else where to test that statement I learned the hard way that it was true.
I hope this helps you in your decision a bit.
I want to "fourth" what the
I want to "fourth" what the previous ladies said here. I don't claim that there's no one else out there who can treat IC successfully, but just as a caution, I was one of the many who wasted years and money on other practitioners -- all of whom had best intentions and were knowledgable each in their own way -- but whose treatments not only didn't help me but in the long-run worsened my disease. I too wish you all the best of health & recovery!
I think I was mistaken in my
I think I was mistaken in my understanding of this website. I thought it was a safe forum for support for all people suffering from pelvic pain and not just for Dr Brizman's patients.
Erin
I am here to support anyone needing support - whether Matia's patient or not. I found great support here myself long before I became a patient. The posts above are from people who are just telling their experience. They are trying to help. I'm sure there are other practitioners out there who can help IC, the tricky part is finding them. I struggled to find help. IC is much less well known here in UK, many doctors and alternative practitioners have never heard of it. I heard of a Chinese herbalist in London who helped someone with IC back to a normal life but he was not a specialist in IC. After reading Matia's doctoral dissertation on IC I realized she was the person I needed to see. It was the right decision for me.
Erin
I just want to be clear in case I was not- I never intended my message to be anything less than supportive. My sincerest apologies to you if my comments came off as preachy or worse. I was sharing my own story my own experience- and I understand that what I have been through is something far different than what you going through. You absolutely have to do what is best for you. Everyone's pathway to health is different. This forum is open to anyone. Again sorry if you felt excluded. I am totally sincere when I say that the intent of this site to support IC/VV/pelvic pain patients back to balance. It so happens that alot of us here are Matia's patients - and alot of us going through very different yet similar symptoms and experiences. any enthusiasm regarding Matia's proticol is because the things we did before current treatment were not helping. It was not a criticism of your choice - it was concern.If something is working for you and it happens to be outside of the box Matia's protical then that is fantastic. I respect that. In fact I repeat- I would love to know if there are other practitioners out there who have helped others recover from IC/pelvic pain. I am sure they are out there but I have yet to meet anyone else. Thanks for voicing your thoughtsand sharing your experience. May peace and wellness be with you. Mary