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HI Everyone,
I would like more info on the healing process from any of you who are further into the treatment.
I have had a couple of days in which my bladder felt almost normal. But they are far and few between. I am always hopeful that I am out of the woods and then the frequency comes back. I have read that it is very up and down but I would like to know what your experience was, Did good days just keep getting longer and better?
I had a pretty good day last Saturday with almost no symptoms and I also experienced that the week before for one day. I am hoping it will grow to being two good days a week soon.
I wonder what makes it fluctuate so? I know there is inflammation etc. but usually with healing when it starts getting better, it gets better in a regular way.
Any input you have as to how your better days increased would be appreciated!
Thanks!
For me, this has not been
For me, this has not been "usual" at all. It can be very crazy-making! I know that I am getting better but it is slow and not gradual each day. Over time, I am having MANY more good days but my bad days can be almost as bad as ever although recently even that has gotten better. I keep track like this- Bad, Medium, OK and Good along with more detailed notes. Over time I can see without a doubt that the OK and Goods are increasing. I try my best to let go of expectations and only focus on each day. That's why the journal over time can be so helpful. I am 17 months into treatment. I want to reiterate that EVERY PERSON IS DIFFERENT but I hope thiis helps a bit! You are healing. IC is tough but we are so fortunate ti have Dr B and also to have the courage and determination to do this!
It does take time
I am 18 months into treatment and my progress has been very good. I went from feeling pretty bad to feeling improvement in month four or so. It kept getting better after that. The stretches of feeling good slowly get longer and the episodes of feeling bad got shorter and we less intense. I would say now I feel good 90% of the time, as in I have no symptoms. When I do I would rate it a 1 maybe a 1.5 on a scale of 1 -5. When I feel bad I can feel my bladder, I may have some slight pressure an a feeling like I could pee but I can easily go 2 hrs if necessary. When I feel good 4 -5 hours between pees in normal. Like Deir said, we are all so different in how we progress and she can attest to how differently we have progressed even though we started at about the same time and we both felt we weren't a terrible case. According to Matia my progress has been fairly normal so people even progress faster then me. You will get there just take it day by day.
I am 4.5 months into
I am 4.5 months into treatment & while I see things changing like better sleep & only waking up 1-2x to Pete at night . My mood anxiety & depression are definitely much better but unfortunately the pain... Bladder, pelvic pain is still there . That is very frustrating because it is the one thing that bothers me the most. I had 2 good days in a row this week then boom today I woke up & the pain is an 8/10. No reason nothing changed ugg its so confusing & discouraging. I would love to be at a point where I feel normal more often than not but it will happen:)
Thanks
Thanks for these comments. It does seem that this takes incredible patience and endurance. This is truly the most difficult thing I have been through mainly because there is no predicted formula for healing, such as "take this pill and you'll be fine in a week."
Lately I have realized how much the frustration of my family life is playing into keeping me sick. I have to take care of that and figure out a way to be happy at home. I believe it's all connected. It does seem though that most people get better but that it varies so much from person to person. I look forward to the day when I can look back on this time and be so glad it's over!!!
It is hard not to feel
It is hard not to feel somehow deficient sometimes. I am kind of disturbed to read that Christine's progress is fairly "normal" although it is further proof that for most people Dr B helps so much. I just hope that at some point, I become one of them. I hope you all do too
I am struggling today. it has been a long time.
For me a bad day is hard to
For me a bad day is hard to take because it makes me worry that it will never get better. I can imagine that would be how it felt too if you had been in treatment for awhile. It's good that you recognize the better days though. That's the only thing that could give hope!
Detours in the Healing Path
Hi Ladies,
(Hi Deir, it's been awhile. I have been thinking of you. How's Nora?)
In the beginning of treatment, I felt terribly. I had battled IC into remission once, but when it came back- it came with a vengeance. I was exhausted and an emotional wreck, anxiety ridden and guilty for not being the mom I wanted to be. My healing has not been "normal" either, but I am healing- and that is what matters. This treatment works.
After 15 months of treatment, my bladder is doing beautifully. I have gone back to work full-time as a high school history teacher and I love it! I love working... I think of all the things I am "able" to do in a day rather than what I "had" to do. Does that make sense? My bladder is not an issue in my day and although sometimes it is more sensitive or bothersome at times, it is simply that- bothersome, not devastating or debilitating.
I sleep- very well! My skin has cleared up, my energy is back and my mood is stable.
However, there have been many side roads for me- the most challenging has been my heart. I have had a host of challenges with my heart during treatment, but Dr. Brizman has simply been wonderful to me.
I contacted a bunch of "old" patients when I began treatment and 90% of them said wonderful things, but a few shared serious doubts - I am so thankful I listed to the positive stories and continued in treatment. I am not even going to imagine the alternative future without it.
Deir, Christine and I all started around the same time and all of us are healing- with our own stories. Work hard, pay attention to the details and be kind to yourself. You will heal.
Hope this helps,
Katie
Thanks Katie, I love hearing
Thanks Katie, I love hearing stories like this!
Hey Deir,
Hey Deir,
I just wanted to chime in here and say that I know how you feel because it's been about 18 months for me and I'm still struggling. Things are definitely better than they were when I first started with Dr. B, but I still have a long way to go. We will all get better if we don't give up :)