Forums:
I know a lot of people just get better, don't look back, and move on in life. That sure would be nice! I started treatment about 2 months with Matia now. Let me start by saying that I love Matia and her comfort. I have put my all my faith, my hope and my life in her hands. My symptoms are extreme bladder soarness, heavy bowling ball feeling when standing, achey back. It started just out of the blue one morning when I woke up feeling a bit like a bladder infection, but different. Luckily, I had a knowledgable gyno who put me in with his uro friend and I was diagnosed within 2 weeks by one of those cytoscope things. He said he was surprised how bad it was in such a short time. Anyway, I guess I thought that after I started treatment with Matia that within a month or so I would feel some big change. I just want to hear from others that maybe they didn't feel a big change in symptoms for while. It's hard not to get scared when your not one of the lucky ones that feels better as soon as you start the diet, or have done treatment for a couple months but don't have any change in symptoms. I have had a couple good days, less noticable pain, but then I go right back to misery and I don't understand why the next day doesn't offer some relief again, or the next or the next. I understand we are all different - our conditions are all different. I would just like to hear other people's strugglethat maybe they didn't feel a change for awhile. To keep my head up and that it REALLY DOES GET BETTER when you hang in there! My energy is good, my spirit wants to move on, especially with spring coming, but my bladder won't budge in being a constant reminder of it's condition. Is this normal what is happening to me, my lack of improvement or break in ouchiness??? I'm just wanting a sign that this is going to work from my body!
Thank you.
hang in there it will come
I've been a patient of Matia's for a little over a year. I struggled with the program a lot in the beginning. I would say it took about 7 or 8 months for me to notice some improvement. And I didn't get any major improvement - it was mostly small, incremental progress. Occassionaly I will get a flare that reminds me how far I've come -- I'll lay down in bed in agony and think --- wow, I can't believe I used to feel like this all day log. It's a really big motivator for me when I all I want to do is gorge myself on Korean food and wash it down with lots of alcohol. But I still have a long way to go. I have a tendency to read the IC success stories obsessively and compare my progress to other people, and then I end up feeling really bad that I haven't come as far as some of the others who were basically cruising at this point. It was really helpful for me to stop reading those stories all together and just focus on myself.
Thank you for your reply. I
Thank you for your reply. I really do appreciate and like hearing from others and how far they have come and what they have been through to get there. I had a couple better days and now this week has been back in the pits. I wonder if anyone else, or if they remember back, had a mentholy or acidy smell to their urine when they were in a flare. I know that sounds discusting, but I notice that everytime I'm in a lot of pain, my urine takes on an odor. Maybe that's inflammation - not sure, but sure would like to know it is common. ??? I'm still having a hard time getting my bowels to work right - that is so frustrating with all these vegies, it should be easy! I would love to hear more stories from people, they really are what keeps those of us getting started and scared going. Poor Matia has to reassure with every phone call, her shoulders take on a heavy load.Thanks to all for their time.Ditto
Ditto01
Urine having an odour sounds like an infection or maybe a kind of detox effect?
I wonder if you are drinking enough water? I've started the List 1 diet (independently) and have worked upto drinking 6 glasses a day. I'm told the advice is to drink 1.5 - 2 liters water a day.
I'm having the same problem with bowels - giving up other fiber sources is what's causing the problem and I'm not used to eating fish or chicken so guess it takes the body a while to adjust. Usual solutions: prunes etc are not allowed for us!
Drinking enough water and doing moderate exercise like walking is supposed to relieve constipation.
walking does help, if I am
walking does help, if I am not getting any exercise it does take an over all effect. I have an indoor bike so I can just sit and take it easy if I need to. Also I live in Fl and sometimes it's just too plane hot to walk out there for me.Warm water also helps with constipation. I always start my morning with a hot cup of water to kick in digestion.
Stick to the diet
My symptoms were not as severe, but I had IC for a long time. I've been on the diet for over a year, and as long as I stick to the diet I'm fine. It's very difficult at first because it feels like the diet is so restrictive. I just ate at home and made my own meals whenever I would be out so that there was no reason to cheat. Whenever you have any problems, call Matia- She may need to change the supplements.
Fear
The terrible discomfort of IC makes the waiting so difficult. I've had treatment with Matia for 10 months now. Sometimes I feel that IC is going, or gone completely, only to find symptoms return a few days later, for no apparent reason. This seems to be a common pattern for many patients. The alternative to Matias program is not an option I would consider (the urologists approach). On bad days, I also wonder if my body is the exception to the rule and won't respond to the treatment. But I realise that I'm not that special - and I will over come this, as others have. I also appreciate all the other diseases I'm preventing in following Matias program - besides IC. I find it helps not to have too many expectations - and then I'm often pleasantly surprised. Hang in there, and don't let fear get in the way of your recovery.
Hi Veronica and others in
Hi Veronica and others in treatment.Just wondered how you were doing in treatment now. Are you having more good days than bad? Do you think you will get to start adding in foods soon? I can relate to what you said about reading everyone's story. I just wish more people would write their success story. I know there are more out there than what has been posted here or on icroadtorecovery. They are encouraging that even if it is a long path, it has a good ending. What are your symptoms anyway?Look forward to hearing from you. Doesn't seem like very many people post on this.
I am doing so much better
I am doing so much better after a year and a half of treatment. I had severe bloating, burning/itching pains from so many foods (onions, citrus) and now I am at least able to eat them in combination with the diet. I can eat oranges, but still not drink the juice straight. I can eat everything in moderation, except vinegar, like in dressings, and spicy foods. It was so worth it to stick to the diet, eat lots of vegetables, and I still try to eat half my meal as vegetables. It did take a while to add new things into my diet. Sometimes I would go 4-5 months without adding anything. I think I had a mild case compared to others, but it was ongoing for at least 10 years. There was no solution when I was first diagnosed besides diet. I was so happy to find a healthy solution without antibiotics or surgery. And I feel really lucky that it worked.
Success Story
I have seen comments on the boards about wishing that there were more success stories posted.
Briefly, here's my story. After three bladder infections in three months (and no bladder infection the previous 10 years) and after an incredibly painful and scary "process of elimination" I was told - "you have IC."
Then, after months with one premier UR "specialist" where I left with a list of 8 drugs to take (4 of which I was told I would take forever) and a bad feeling that I was not on the right path, I chose to try Dr. Fugazawa's program.
Then, after three months taking antibiotics (one that I was alergic to) and several steps back, I found Matia.
I started with Matia in January 2005. I had some rough times for about 5 months after that. Then I started to feel a bit more in control when a flare would hit. They would last 2-3 days instead of week. FYI to all of you, my last flare was in June 2005 - six months after I started. I stuck to the program and worked hard. Sometimes I felt deprived (at restaurants), sometimes I felt like I was making great strides, sometimes I couldn't remember a conversation from the day before (the herbs made me foggy), and other times I felt relief just to have a three day reprieve from the constant raw feeling in my bladder.
As I got into the latter part of 2005, I was becoming used to the "slightly raw feeling" and figured that if this was the best it got, it was SO much better I could live with it. But by October 2006, I couldn't tell you where my bladder was let alone remember the pain that seemed to torment me day and night!
Yes, during the process, it seemed like an endless, painful eternity. The set backs felt like I was taking major steps backward, but I wasn't.
Now, it's June 2008! I don't eat tomatoes or oranges. That's it. The rest of my life is non-bladder concious. No flares, no pain, a normal life. Please understand that it may take time, but in retrospect, it was neither a long time nor a difficult time.
LOOKING FOR ADVICE
Hello Natasha,
My name is Tammy and this is my first posting to this site. The beginning of our stories are a lot a like. Between Feb. and April of this year I had three UTI's. I had had one other but many years ago. During the last round of antibotics I found that my symptoms were not getting better. Frequency and urgency are my only symptoms.
I was told by the nurse over the phone that my doctor wanted me to see a Urologist because she thought that I had IC. I didn't know what that was but quickly looked it up on Google. It didn't take me long to find Jane's website and I started "the diet" right away. I felt better within days. By my second (2 weeks later) visit to my new Urologist the urgency was gone and the frequency was much improved. My Cscan had come back fine. It showed a thickening of the bladder wall. My urologist said that she thought I had a bladder inflamation from the antibotics and told me it should go away in 3 to 6 months. She told me to come back if any UTI's were suspected.
This was happy news but that nagging in the back of my mind keeps telling me that I'm not out of the woods yet. All the stories I've read on Jane's site where people describe their symptoms...I never felt like my UTI's were gone but the cultures (after antibotics) came back clean all three times. I still get bladder spasms. I started my period and my frequecy flared up the day before and during. I'm wondering if anybody else has had a similar experience.
Matia's doing great work and I tell everybody who will listen to me about her. She doesn't even know me but she has already helped me tremendously! I will be on the diet for some time before I dare to stray.
Thanks for listening,
Tammy
Eyes
Hi all:
I am wondering if any past or current patients of Matia's have had any problems with their eyes. I was on meds that cause blurry and dry eyes until two months ago. I still have dry eyes which cause my eyes to be blurry. I have been to the eye specialist and my eyes are healthy except for the dryness. I am not sure if it is just because of the meds or is it a symptom of IC. This disease affects people from head to toe which is extremely frustrating. I have a hard time working because I am at the computer a lot of the day. I also have a hard time driving and being in the sun. Matia says that eyes can be affected but should get better. Just wanting to know from others if this has been an issue.
reply to Kriste
I 'm not sure if this is exactly relates to what you are experincing- this happens to me on occasion too. I also work in an office with a computer all day and notice that sometimes my eyes ache very badly and feel super tired at the end of the day which makes things a little blurry. I figured out this was caused by a possible glare on the screen which I corrected and indeed I do feel better and have not noticed this issue much since then. At the moment in my 7th week of treatment my eyes lookpretty red. just probably some cleansing going on. I do struggle with dizziness as a symntomn. Does anyone else feel this syntomn? I think there are probably any number of unusual physical manefestations of IC syntomns. In general my skin/hair is really dry right now too- I think in time your body will even out its moisturizing abilities.
Mary
For Mary
Thanks Mary for your reply.
You are so right that there are so many physical manifestations with this IC. Right now my eyes are a real bother. It is like there is a film over them. Today my head feels a little strange, sort of dizzy. My lips are also very dry. I am at the same point as you in treatment about seven weeks. Kristeen
To Mary
Hi Mary:
I am wondering if your dryness has got any better. I have noticed that my scalp has been getting much drier lately. I am also getting dry patches on my face and neck. My top lip is also very chapped. My eyes are also still dry. Have you been able to do anything for the dryness. I know that it is the best for it to heal from within but I am a little concerned about the patches on my face getting out of control. I think that you and I are at the same point in our treatment, just over 3 months.
Kriste
Kriste,
One of the herbs I take-goldenseale I beleive is responsible for really drying out my body. Probably good since the yeast is so damp-and yes I do have dry skin and my scalp is flaking up now too. My eyes feel somewhat sore/a little dried out now that you mention it. I am using jojoba oil for my skin. I switched to a new soap - its a plain soap and I think it's safe but I keep forgetting to ask Matia to be sure. I beleive it is KISS MY FACE brand. It is pretty much made with olive oil and salt and sapoins of some kind. basic as can be and that has helped my skin. I used to get dry patches around my nose/on my arms as a child and from time to time they crop up in my treatment. this is good because it probably means my large intestine is getting worked on and skin issues/elimination/intestines are connected.Staying hydrated, applying jojoba oil/olive oil and switching to a shower filter have helped. not sure how to handle the dry scalp without making things too oily/interfering with treatment. maybe a jojoba scalp massage then a mild shampoo? cautious experiments are in order. any suggestions out there for safe homemade product releif for itchy yeast infections? taking suggestions! thanks
everyone!
Mary
Mary
I would ask Matia what you can use for this. In the past I have added tea tree oil to my shampoo for this and then I was my head in the sink so that I don't get the run off. I have really short hair so it helps. I would talk it out in your next appointment though because Matia may have something she wants you to do.I really like her shampoo on the bomasence too. I didn't find the conditioner to detangle that well I had to use a lot. I should write about that in the reviews so it can be adjusted. I don't think there are many reviews.Thats all I have for now my area is more skin I am not sure about scalp conditions.
Honeybee
Are you talking about scalp itchy yeast infections or more intimate areas?
Just asking as I was going to give advice on the latter but maybe ur referring to itchy scalp?
yeast infections
Jane,
I would love to know what suggestions you may have for releif for vaginal yeast infections. Like my bladder flares I seem to get yeast infection flares too! The things I used to do before treatment are most definately too strong to use now. I appreciate it tremendously!
Mary
yeast infections
Honeybee, I use either live yoghurt (with contents of a Megadophilus capsule mixed in and applied via a bulb douche) or sometimes I use half a tea tree oil pessary. When I used a whole pessary it really burnt so now I cut it in half and use it overnight without any burning. I guess u could cut it into less than a half if u felt it may be too strong.
I think tea tree is very drying tho and am cautious with it - I don't use it very often tho always have some in the fridge. I find both of these strategies very useful but maybe too strong for some. The yoghurt is really cooling, can use it externally also.
Other advice I've found useful is to allow air to the area - where possible.
Stockings and suspenders rather than tights for example and no pants (where socially acceptable of course!) under loose skirt or baggy shorts/culottes.
The aim is to keep the area dry and cool as yeast love damp hot conditions.
JaneJones
Oh Thank you so much! You are great!
Mary
Honeybee/Mary
I'm really glad if I can be of help. Let me know if any of the advice works for you.
Best wishes, Jane