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Hello ladies,
Aquick question in the hope that you can help with my fears. When IC first showed up in 1997, and I had a cystoscopy, it showed nothing. My recent one showed obvious bladder wall damage - some glomerulations were seen. Do even bladders with glomerulations heal? What about scar tissue? Does that heal? I can imagine healing a 'new' IC bladder, but what about an 'old' one?
Yes! All bladders can heal.
Yes! All bladders can heal. ... there are many success stories on here who have had IC for quite some time and with significant damage. I, myself, have had IC on and off for 11 years and my bladder is doing very well (I am in month 7). In fact.... I think I remember reading that every single cell has been regenerated in you body within 7 years... essentially, you are a new "you". Some organs regenerate much more quickly, but my understanding is that yes, all bladders can heal.
As a side note, I had multiple flares every day throughout treatment with windows of relief here and there. Then one day in my sixth month I was flare free and I haven't had a flare since. Hang in there, Katie
Yay fahlmank
Good for you Fahlmank, my bladder/urethra only hurts in the morning, and at night right now. I am waiting for it all to be gone. Dr.B told me 6 months, I am on my 5th right now, and patiently waiting. I think what affects me most though is the die off, being tired and weak, feeling like I have a flu/cold. But I am so glad to hear that you are doing good.
glomeration
Those could be from the procedure itself. The epidemiology is unclear if there is reverse causation. Meaning--do you have the "glomerations" because you there is something organic or is the test giving you the glomerations!!
Btw Katie, I totally wish there was a "like" button. Congrats.
Thanks both - I don't think the glomerulations are
from the procedure because I did not have a stretch - they just filled it with 200 mls., or however much they have to put in there and looked inside.
Katy - I don't seem to have 'flares' - rather - I have significant pressure in my bladder that is constant. It lessens a little sometimes but is always present. I USED to have 'flares' with long periods of 'normal' in between. My worries are that the thing has progressed - and there must by now be damage.
Hi Again, Vin- I feel as
Hi Again,
Vin- I feel as though I have had a couple different "types" of IC. I have had the pressure all the time IC (my most recent journey-for about a year)- the flares with fairly normal in between and the remission journey. Don't know if this may help you, but I found there is a tremendous amount of energy I used trying to decide if this treatment would work and if I am getting better and the tough answer is.... you won't know until you try every day and give it time (which I know you are doing;) I made the deal with myself that I am not going to make an assessment regarding my progress until I have a year under my belt. Until then, I would try to let go all the worry because it certainly wasn't helping me be well and wouldn't get me anywhere faster. We are all so very different- I understand- but this thought helped me a great deal when I was in constant pain and thinking I was too far gone to help. I hope this thought helps.... sending healing energy to you:)
Researchnerd- Thanks! How are you feeling after your rough patch a few weeks ago? What is the PHD you are working on? I always meant to ask.
Calieve- So glad to hear you are doing better as well! I bet that discomfort will go away quickly!
Katie
Hi Fahlmank - you are so
'sorted' with this disease. I am still in the 'headless chicken' phase. You seem to calm and collected. How do you do it? It must have been tough being diagnosed at 19. Have you just decided to 'live' with it - until now, that is? I know that I need to clam down and take it one day at a time but having children and this changes the goalposts substantially. I admire you for being so cool and collected.
Hey Fahlmank, I like that you
Hey Fahlmank, I like that you said that you are not going to make an assessment regarding progress until you have one year done. That is really good advice for me, and I am going to use that myself. Dr. B told me I would feel significantly better by 6 months, and I'm almost there =). But I have to remember that to be completely healthy again, the body needs time to heal. And it seems like it takes patients between a year to 3 years to get there. Like Selichan posted, I am waiting to get healthy so I can start having kids. But then I think, I should enjoy myself as a healthy person before jumping into that right away. Anyway, I really like the one year thing. I think I was trying to assess myself everyday, and every month but putting a year on it is more realistic. That way, I won't get down on myself or depressed if I am having a bad month.
Hi ladies, Vin- I appreciate
Hi ladies,
Vin- I appreciate the compliment about being "sorted" about IC. Believe me, I was not always, but I am out of constant pain now and being out of pain allows the mind to rebalance. I would not say that I have decided to live with it.... from the moment I was diagnosed I have had a "plan"...lol. I remember sitting in the urologists office at 19 after the "typical" horror show that goes along with IC and urology and he told my parents that if I proved to be a severe case, then the option to remove my bladder was always there. At that moment, my parents and I decided (love my parents:) that conventional medicine had no idea what they were doing and that their methods would cause more harm than good so.... I have always taken an alternative and moderate approach to IC. But I think all disease, and healing from it, is about perspective. For example... it does not make sense to me to "fight" IC. For me, I needed to accept that I have it then work on rebalancing it, and acknowledging it at the same time. Does that make sense? Because "fighting" it increases stress hormones in the flight or fight response and frankly, made me very tired. I hope that once I am rebalanced with Matia that I will never have to deal with it again, I think it is more realistic to imagine that I will need to manage this imbalance, to some degree, my whole life. I view that as a gift... it keeps me from living a lifestyle of the complacent and forces me to be awake.
Calieve- I am happy that the one year concept brings you some comfort. It has made a world of difference in my recovery. Second guessing yourself/treatment decision every day was very taxing on me.
Hope you are all feeling well soon,
Katie
Hey Fahlmank, Wow I can't
Hey Fahlmank,
Wow I can't believe that the urologist said that the option to remove your bladder was always there. Oh man, that sucks. I read about how they did that to some patients, and the IC eventually came back. I was so sad for the patients that had to go through that. I completly understand what you mean about not fighting it. I feel that inside, sometimes I wish I just didn't have it, and that I was healthy like so many other people are. Fighting it just causes more anger, and stress which makes everything worse. But it is so much better to accept it, and work on it, and fix it. It is blessing actually. I am cooking so much more than I ever had. And I have learned so much about the body, the gut, and about food.
You write some very good words, seriously they are an inspiration to me. Everything you say totally hits home with me, and helps me out a lot.
BTW, I'm still going through die-off this month, but it is not as bad as last month. So hopefully, it just gets less, and less until it's gone. =)
Thank you Fahlmark
Thank you for your comment about the mind being able to rebalance when it is out of pain. It has helped me to not be so hard on myself for still feeling fear, and anxiety and the miriad of thoughts and feelings that rush over us, I seem to cope better emotionally for a few days and then go under again, but I am in constant pain, the levels change throughout the day and somedays are better than others but I have not been out of pain since my IC started so I should not berate myself for still struggling mentally/emotionally and wishing I was so much stronger.
I am so pleased for you that you are out of pain, how wonderful. Of course I so want that for me but I know that it is not my time for that blessing, I think my body still has along way to go so I must wait patiently for that day. But how amazing that just one day it stopped and has not come back yet.
Your philosophy about ensuring balance so you keep in recovery is such a wise one and is exactly how I have thought about this.
I hope you continue to heal and stay pain free.
Beautiful words, Haflmank.
Beautiful words, Haflmank.