Does this really work?

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Ok all so some of you may have already read my previous post about being pregnant and having a possible IC issue, I have questions about this program and how it's worked for you. Do you really notice a difference? I've been sifting through this forum and am getting so many different mixed signals on whether or not you all are being helped. Which I hope you are. I've been on the diet for a few days (dr Brizman wants to wait to actually treat me after the baby) and it seems like I'm getting worse which makes me feel like this isn't food related. I would love some positive stories. I think looking through the forum is actually scaring me more than anything, especially when I see people who are going on 2 years and still are in discomfort. It makes me curious as to why the posts get so many views but not very many responses. 

Christine222's picture
Christine222

All I can say is that it has worked for me. I am about 11 months in and I feel about 98% better. I asked her if I was the norm in all this and this is what she told me. About 20% sail through, I am not in this group even though I have donve very well. About 30% do suffer and take awhile to get there, I am also not in this group. And about 50% do about as well as I have done and in that 50% she said I am in the middle. So does this work, yes, can it take more then a year, yes, but what are your options. I feel so blessed to have taken this path to healing.

SarahC's picture
SarahC

Hi there, it's working for me. I've been in treatment 10 months. When I came down with IC I had frequency (12-15 times a day, 3-4 times a night) constant urge, buzzing in my urethra, bladder pain (like an animal scratching to get out), pain throughout my pelvis, vulvodynia, IBS, and vaginal pain. My remaining symptoms are occasional very vague urge (like I might be *about* to need to pee), soreness on and off in my external tissues and some  irritation in and around my vagina - itching/tickling, also on and off. The diet helped me very much, and since I've been in treatment I've improved steadily. I started seeing a definite difference around 3 months in, when I had 3 days of very low symptoms in a row. I keep a journal of my progress and last month had 10 symptom-free days (my highest total so far).
 
It's not easy, and one of the hardest things is that things seesaw: having bad days again after good ones is almost tougher, psychologically, then feeling steadily ill, I find! But it gets easier to be positive as you feel better. yes, it takes some people years to get to the point of being symptom-free, but most see improvement over that time, so it's not like being stuck in the same place of feeling 24/7 awful for all that time. And take it from me: when you're feeling good, you completely forget about IC, so quickly it's almost alarming! I don't have any symptoms tonight and it's as if IC never happened!
 
I've also found it helpful to note the tiny improvements (because the better I get the harder it is to get better - or the harder it is to see the improvements because they're less dramatic). So for example up to around christmas time I used to get this feeling over my urethra that wasn't pain so much as awareness, like having a light shined on it. THis has now been gone for three months. Last weekend, I slept through the night, got up to pee at 7, and went back to sleep until about 10 (my son was at his father's!) and when I woke at 10 I couldn't feel my bladder at all! this was AMAZING for me  - if I go back to sleep after peeing I'm always just aware of my bladder when I wake - not pain, just that it's there. So this was a big change. I'm hoping to feel more or less symptom-free at the two year mark- that's my hope!
 
Anyway, long story short - I am confident in the programme and in Dr B. Bear in mind that people come on here when they're feeling bad - when you're feeling good, you're off living your life, and don't bother. So the picture you get on here is necessarily tilted. The best thing I can say is that if my best friend came down with IC I'd have her on the plane to LA before her feet had time to touch the ground.

SarahC's picture
SarahC

Hi Cristine, that's so interesting! I reckon I'm in the middle 50%, though I haven't done quite as well as you I don't think - I'd say I'm more like 85% just now. But am hugely grateful for my progress, and (really never thought I'd say this) for the changes this has brought to my life. I've embarked on therapy (which I REALLY needed to do), am calmer, take pleasure in smaller things, appreciate my son more. All sorts. On the good days (of which there are more and more - and today was one) I feel blessed.
 
Actually, as further encouragement - my day today: staying up with my parents with my son, got up with him at 7, then got sent back to bed by my dad (I LOVE my dad :)). Woke up at 9.30, peed, felt fine. had a shower, ran some errands, feeling fine all the way. Had lunch and drove out to a great big bookshop, where I bought secondhand books, showed my son a toy train and drank a lovely cup of black coffee in the cafe. Only symptom through all this was an ache in my labia(!) which is a pre-period thing for me. Came home, had tea. Have peed 3 times today I think. Read to my son, got him to bed, watched some TV with my parents. About to go to bed myself now (it's nearly 11pm in the UK!). And still no symptoms. Looking forward to reading and going to sleep, and hopefully sleeping through! When I compare this to when I was staying here a year and a half ago when IC had just hit - and I was just sobbing all over my dad, feeling AWFUL, like I was trapped in a nightmare and  couldn't possibly raise my son while feeling like this, I feel astounded at my recovery.
 
So so delighted you're feeling so well Cristine - and that you're taking time to come on and encourage others! Well done you, lots of love xxx

Christine222's picture
Christine222

Sarah I am glad to hear you are doing so well to! It's nice to have normal days isn't it? I know what you mean about forgetting all about IC when you feel well, I think the thing I really forget is the pain and the fear. The beginning was such an awful time I am glad not to remember it. I have most days now with no symptoms, if I do have any it's a feeling like I need to pee. It's just annoying and really doesn't interfer in my day. I was even bad and had take out pizza last night and it didn't bother me AT ALL! It was really so nice just to feel normal.

MinnieMouse's picture
MinnieMouse

Ok can I just say that I love you both so much right now?! Thank you for sharing your success with me it gives me something to hold onto. I'm calling Monday to set up my appt with Dr Brizman, she said she would see me for the first consult before my delivery so that I'm not leaving a newborn baby behind or trying to travel with one. The receptionist Lynn said some people actually like to bring their babies, not sure what that's all about, but I need to just focus on me right now, happy mom = happy baby. I'm in AZ so I'm not too far but still. I am definitely a statistics girl, I hate that about me sometimes, so thanks for sharing those stats with me. I do wish that 100% could just sail through but I understand that's just not the way life works and bodies are all different! Again thank you for sharing, and I hope if you're reading this and having success that you will share as well, I know it will help more people than just myself :) 

deir's picture
deir

Glad you're feeling hopeful Lyndsey!
 
I wish I had brought my daughter when I went. I'd love to  have Dr B as her dr too. I left her and it was tough because she was (is) still nursing but she was older and I pumped. The thought of flying across the country with a todddler was a nightmare to me plus I would have needed to bring someone else too if I brought her.
 
I think what it comes down to is I believe in this type of healing and Dr B is the expert on IC in particular so I feel confidant that this is the right path for me even though my progress hasn't been super speedy like I thought it would!
I am getting better by the way!

fahlmank's picture
fahlmank

Hi Ladies! Welcome Lyndsey;) Congratulations on your beautiful baby to be! I have had IC on and off since 2001, I am 30 years old and have two daughters. I am in my 8th month of treatment and am doing really well. If you track my name on here you will see it has been quite a journey! My bladder does not interfere with my life anymore. I do not have times of the day where I know I need to be home because (between 3-5pm) my body would just be sick. I felt discomfort 24/7 and became very fearful that this is how life would be. Treatment was the most difficult for me between 4-6 months because I felt as though I had been doing this long enough to feel better, yet I felt worse. I kept emailing Dr.B.... bless her patient soul;) and emailing other patients to ask about their stories. I am certainly not done with treatment. But honestly, if I didn't get any better, I could live like this. My bladder discomfort is almost gone. I regularly go 3 hours between voiding and I am doing well on tolerating list 3 foods. I still have some food sensitivities, but I feel comfortable they will diminish over time. I have also experienced a rapid heart rate that I was hospitalized for a few times that was diagnosed as an autonomic disorder called POTS... anyway, Dr.B is continuing to work with me and my heart is doing SO much better. Most days, I do not even notice it AND I am slowly weaning myself off of medication. Please feel free to email me with questions. I am happy to pay it forward... many did so for me;) Good luck and enjoy these moments, it's amazing how quickly these little ones grow up!

pterzwife's picture
pterzwife

These are REALLY FANTASTIC posts. Thanl you all so much for putting them up. I had my first appt with Dr. B on 2/24/12 and previously posted about problems with the herbs. I did not understand what Dr. B was talking about when she said that she could recombine them and I would stop getting an allergic sinus headache but that happened this week and I am thrilled because I know that herbs are an essential part of this process. It is too early for me to say too much more except that there is a lot of psychology involved in doing the diet and giving up sugar- but if I can get through those crunch times in the day, it is mostly ok. Also, today I had a really minimal bladder symptoms day and it sure gives one HOPE!

soniafa's picture
soniafa

I'm 6 months into treatment and I have improved considerably,
 
I flied to L.A. from LDN on September with 24h bladder pain 6-8 plus pressure. Frequency 20 times a day, waking up at night 3 times, horrid vaginal symptoms which include-crawling, urethral pain, irritation, awful dryness, swollen labia, redness, burning. I felt drained incapable of walk. My nails were half white, my hair was falling, and I was very skinny. Basically I was feeling awful. After meals I always felt my symptoms worsened.
 
I started to feel better within 4 months but at the 5th month I turned a big corner were pressure, crawling, urethral burning-pain have disappear. Now what I have left is bladder pain level 1-2 but is kinda external generally, like muscular pelvic inflammation, the area feels very tight and physical activity is a big trigger for me, specially when I sit on a chair and that's very annoying. I only tolerate the kneeling chair at the moment. I think I might have some sort of muscular-hip dysfunction plus gut and bladder inflammation, Dr B assures me all will go away when inflammation goes down... Sometimes I can get food flares were I get horrible gut-bladder pain- dairy, egg yolks are the triggers. Nails are very healthy now and hair is better. Vagina is doing very good as well, THANKS GOD! although sex is out yet..... Frequency is 8 times day and 1 or 0 at night. I also have more energy and I'm able to do more stuff.
 
Things that helped me to get better:
 
-Sticking to the diet religiously, NO CHEATING
-Finding the right water, mine is low sulphates, low potassium, low nitrates ...
-To have faith and KNOW that I am healing... Although is hard, take one day at a time and try to be positive. Your cells need to know that everything is ok, is a long way, but you will get there. Books-videos-audiobooks that have helped are anything from Eckhart Tolle   , Deepak Chopra, Bruce H. Lipton, Wayne Dyer...
-I also had to stop working, sitting and stress was unbearabe, since I did that I felt million times better. I'm freelancing now from home
-Eating red meat every day, is crazy but before IC I was kinda vegetarian and my body was craving for meat. My estrogen levels are MUCH BETTER thanks to my daily organic fillet. yumm
-An electric heating pad saved my life many nights
-Walking every day
 
 
I hope this helps and brings some hope
LOVE