Dear all,
I realise that this is a difficult question but are Dr. B's predictons regarding progress correct, e.g., when she says that someone will feel this or that in two/three/ whatever months or when they will end treatment? I've been in treatment for one month so don't know yet!
Also, does anyone know or what people think happens to the bladder lining once it's healed - does it regenerate itself, does it put down a new layer but one that's inferior to the original, etc.? Are we actually able to regenerate our linings, but more slowly than 'normal' people or do we not regenerate them at all? Does anyone know? I've been reading DR. B's blogs and she mentiones quite a bit that many people do go back to their previous lives - suggesting that their bladders can take it without too much trouble. This implies that healing is 'as new'. What do you think?
Well, she's human so she's not a crystal ball. I do know that her timeline predictions are not always correct for everyone. That being said, every "prediction" she's given me has been spot on. I'm only 4.5 months into treatment, so I don't know about the final end date thing yet. She gave me an estimated time frame of 2.5 years, and right now I have no reason to believe that isn't true, but I'm not so caught up in that. Every time she's told me to expect something, it's happened almost exactly to how she thought, even when I doubted. Here's an example. During my appt in December, I was having so so so much constant urethral pain. It felt like I was sliding backwards and wasn't progressing. She told me not to worry because she thought I'd be mostly out of pain within a month. I thought that was crazy talk considering how terrible I was feeling. But it was true. It started to subside and at my last appointment at the beginning of this month, I was happy to report that I was mostly out of intense pain and was just feeling some discomfort and sensitivity most of the time.
Here's the thing about predictions though... try not to get too caught up in them. Sometimes they happen, sometimes they don't. If you invest a lot of energy in believing everything will happen exactly according to plan, you will be majorly disappointed if it doesn't happen the way you expected. And when you get disappointed, it becomes so easy to doubt treatment and to doubt healing when in fact, healing is still happening. I think one thing that's helped me is that I never believe predictions because I don't want to be disappointed if they don't happen. I have no expectations in treatment. If I expect something to happen and it doesn't, I would beat myself up over it and doubt. And I never want to doubt.
She told me I would be about a year. Right now I am starting my 9th month. I feel about 90 - 95% better. I think by 12 months I will no longer have ANY symptoms. But if I still do I will just keep plugin' along because where I am now and where I was then is a world of difference.
Early on I had bladder pressure, burning, urethra stinging, lower back ache, frequency. It was slow and up and down but it does go away. I now have gone for over 8 days with hardly even knowing I have a bladder. At first it starts as a few good hrs then it will get to a few good days then it goes to a few good weeks. The bad days just get less and the good just get longer. Hang in there!
I had been doing her diet for over a month before my appt. so that had made a big difference for me already. I was no longer in any pain, it was on a level 2-4 in discomfort most days. She felt that was a great sign and said I would feel much better in about 3-4 weeks. I didn't notice much of a change though until about 3 months then it just kept getting better little by little.
You are SO blessed. I'm sure you know that! I can't help feeling really jealous of you! : /
I started the diet 2 months before seeing Matia, and I have not cheated on the diet. But Matia said she thought I'd feel better in a year. Well, it will be two years this feb. And I still struggle a lot with bladder symptoms. Sure some things got a lot better, but man I do not feel out of the woods at all.
She's not God, and you have to just be glad we have someone like her who really does want to help.
I do feel blessed to be doing so well. Please don't be jealous. I think I have a lot of factors in my favor as to why it is working so well so fast. I have always been very healthy. I was born to a healthy mother. I was never on the pill or any kind of medication. I've only had antibiotics 2x as an adult. I did not have any other condition prior to this like IBS or Fibromyalgia. I was not working when I got sick so I was able to rest a lot in the beginning. I sought treatment right away and never did any of the conventional treatments offered by western medicine. I've never had any allergies and I've had a pretty easy time adding in foods. As of now as long as it is real food I can eat it. Everyone is different and has different circumstances in their lives as to why we got this. Some just have more issues to work out with their bodies but I think we will all reach the same place in the end, good health!
Its not taking me twice as long as she predicted. It's taking me longer then that. I still have a lot of bladder symptoms. But yes, it has gotten better, my bladder that is. For example. I used to have many days of going 40 times a day. Now, its down to about 20-25 for a normal day. I used to have burning ALL the time, and now only when I know I am flaring. My periods used to be horrid, and they got to be better.
But, I still have a hard time feeing "healed" at all when I have to pee that often, and still "feel" my bladder all the time.
I know I need to not be jealous of others, how silly. But my human nature struggles not to be! Its easy to have a pity party when you have something like IC. I have had it over 10 years, I am only in my middle twenties... never did drugs, didn't drank a lot, only on antibiotics 3-4 times. But I think what got me was extreme emotions stuffed down all growing up. And insomnia, and having to take sleeping pills every night for over 7 years. I never ate really bad either.
Matia has only said to me the same thing I read that she tells everyone else. Some people take a lot longer then others. Right now I am not looking for the day I am completely better, as morbid as that sounds, I just can't imagine it. I am only trying to take one day at a time and just survive, and not let my emotions run wild, or my fears control me.
Hopeful just wanted to say I wish it was different for you. (((((((hug))))))))
Thank you deir. i do too. But thank God, I know this is only a temporary body : ) I have heaven to look forward to, and no more pain or suffering.
I wish I were stronger, that I could be more encouraging to people on this site. Sometimes though, I need to release how I am really feeling I guess. Thats part of the reason I am so sick, bottling things up!
Thanks Vin43 for your encouragement. Yes, you are right. I have gotten better. It is just so slow, and it feels like I have such a very long way to go. And the symptoms are still really hard to live with.
I have asked Matia over the years about acupuncture, and she always says a big NO. She says it could stir things up that will cause me a lot of pain. I think like with a lot of things, though there is a chance it could help if you went to the right person, she has no way of knowing if I will go to a qualified person, who would do it like she did. And the down side could be pretty negative of an outcome.
She told me I would be a 2 year patient and it has been a year today and I do not have absolutely any bladder symptoms whatsoever anymore. I do have other problems like muscle problems, dandruff, and I am not giong regularly like I would like to so I am going to continue being her patient. I am not being a great one though. When the bladder pain stops it is really hard to be so strict with the lifestyle!
That's awesome LeeLee!!!
She told me I would be feeling so much better by the 4th month in treatment and she was absolutely right. 3 days in a row without bladder pain, sleeping through the night 2-3 days a week and all the horrid vaginal symptoms gone... I just dreamt about days like these... I still have problems with urethra burning and frequency depending on what I eat, same with the bladder pain. Of course I don't expect all my symptoms to faint one night, I cannot eat most foods and have a long way to go to heal the gut....I'm walking through a minefield, but healing is taking place.
Thanks for this. have been having a bad day today so had been going back over her words - as you probably know, it's the only thing to hold on to sometimes.