More on the Progression

[Godwillhelp]

Thank you so much for your input on progression....I read what Dr. Parsons said about the early/mid/and late stages of progression. If I had to try to pinpoint it I would say that I was in the early stage about 9 years ago.....I would feel pressure in my bladder but than it would go away and come again a few months later....it would last about a week or two.
Now....I would have to say I am in the mid stage....according to Dr. Parsons....that means that you go around 10 times or more a day with freq/urgency and moderate pain. Dr. Parsons also says that if caught around this time, the patient can keep themselves from moving onto the advanced stage by taking meds and watching what they eat. By doing this.....they should beable to avoid progressing. Don't know what to really think about that....I have been on different meds....watched what I eat and drink and I still find that I get knew symptoms or worsening symptoms. I haven't found the combo that makes it go into remission. I just don't think I could survive the advanced stage....some of the posts are pretty scary and I am not a strong person. Plus I have a husband that is in the military and gone quite a bit and I have three kids to take care of.....

Thanks again for your thoughts and for caring,

Dana

[ICLori]

Dana, I understand how scary it is. I'm a military wife, too, btw. No kids, but I have two cats I treat like kids. Sometimes I'm glad I don't have small children to care for, because there are many days I just don't feel well. A lot of times I feel tired and need more sleep, maybe because I don't get very good quality sleep with the IC, or maybe for other reasons (if this is an autoimmune disease, then it's common with autoimmune diseases to feel enormous fatigue.)

Like you, I haven't found anything yet that has really worked all that well for me, for long. I have found some things that have worked for awhile - Doxycycline and/or Elmiron (don't know which one because I started them both at the same time) gave me a five-month remission. I thought the IC was gone forever. It came back, bad as ever, maybe even worse than ever. Probably worse than ever.

Then recently I tried cytotec and had a good one or two month remission. Sometimes my bladder still had some frequency at night, but I was eating and drinking what I wanted and happy. Then I got a UTI and my bladder got really bad again and it just seems like every time I get a UTI, my bladder gets worse and worse and never gets all the way better again.

So now, after trying every herbal/alternative medicine type treatment on the planet, and after having tried: Atarax (hydroxizine), Ditropan, DMSO, Elavil, Pamelor, several SSRI's, Wellbutrin, Flexeril, Singulair, Tagemet, calcium in various forms, l-argnine, TEN-S unit, physical therapy to rule out pelvic floor dysfunction, hydrodistentions (which don't work well for me but work well for others to give remission), Percocet, Cytotec.....I'll bet I'm forgetting a few medicines, honestly...oh yes and the Bion, an experimental neurostimulation device.....I'm still here with a bladder that drives me nuts. Oh, and I tried vaginal estrogen cream. And various antibiotics. (Cipro makes me feel better while I'm on it but I can't get a doc to let me just stay on Cipro forever...and that's probably just as well, since it wouldn't be safe I guess...) Oh and of course I tried pyridium - it helps if I have a real UTI but not for an IC flare.

My bladder is especially sensitive to medications, and will really flare horribly if I take any OTC pain relievers or antihistamines. So that means when I get cramps, headaches, you name it, hives, etc. I just have to pick between unbearable bladder pain and whatever ailment I'm suffering.

I'm trying to kind of live my life in spite of this disease. I volunteer one day a week and bake cookies one day a week to bring in to the hospital. I try to paint (bad) watercolor paintings for relatives (for some reason they actually seem to like my paintings, they probably just pity me...) and friends. I try to cook nice meals for my husband and keep the household neat and clean. I try to do things I enjoy each day, like watch TV programs I like and read things on the internet. I spend time nearly every day thinking about IC and trying to figure out how I can get myself (and maybe others) better from this disease.

Does that sound kind of like you? You are trying to live your life as best you can, but sometimes you really don't feel well, and you're pretty tired of the bladder symptoms?

Anyway, just wanted to say, I totally understand.

My case is progressive, but not everyone's case is. You have so much on your plate to worry about already with having this IC...best to let the future take care of itself.

There is some hope - they have been doing so much research lately on this, they've found the anti-proliferative factor (APF) in IC'ers urine, surely it won't be too much longer before there is a test and a remedy based on that, that will work for nearly all of us.

Have you had pelvic floor dysfunction/and/or overactive bladder ruled out already? I'm sure you must have. But some Ic'ers find that they actually have PFD instead of or in addition to traditional IC, and they get much better when they have physical therapy for that. That's something worth exploring...

Also, what meds have you tried so far? Any rescue instillations or DMSO? DMSO didn't help me any (actually I think it made me worse because I got infections) but it does help some a lot.

Anyway, the next great thing I'm trying is called Cyclosporine-A. My doc said I could try it when I'm ready. I'm thinking of trying it at the end of May or so. If you do a search on the board (you can see the search key at the top of the message boards in the blue band) you can read good stuff about Cyclosporine-A. It's a really risky drug but it seems to have some success according to some studies, in IC patients.

Actually I'm not even really sure how risky it is exactly. I can't get a feel for it. Nothing terribly horrible happened to the people in the study (two developed temporary high blood pressure, which resolved when they lowered the dose) but if you read the potential side effects, it's enough to scare anyone away. I wish I knew how common those potential side effects were. If they only happen to one in a million, I might not worry so much. If they happen to 20%, then I'll be really worried, you know?

Well, I'll let the board know how it goes when I start the Cyclosporine-A. It's kind of gaining favor as a treatment lately with urologists because of recent studies. Anyway that's one more drug to read up on if you've tried everything else and are going nuts from your bladder.

Blessings,
Lori

[Godwillhelp]

Thanks Lori....I am not happy that any of us have this disease but it is nice to read a post from someone that can relate to what I am going through. What branch is your husband in? Mine is in the Marine Corp. He is to deploy in July...lets hope I am in remission since we have three wonderful kids.....
It is definately hard to live with this day to day and to think about it all the time.....obsess is more like it. I know I need to not worry about the future but when I look at where I started with this and now where I am at....it is hard not to get panicky. I have a very low pain tolerance and I don't know what I would do if I had the severe pain that I read about.
I personally think that a birth control pill has thrown me into this mess and I am having the WORST time getting it out of my body!!! Either that or it is something I can't identify.

Thanks again for your thoughts...

Dana

[ICLori]

Hi, Dana, thanks for writing back! My hubby is Army. (Both are ground-gaining forces!)

I hope the deployment goes by quickly and your husband will be returned to you safe and sound. Waiting for the deployment date is probably the hardest time of all.

I obsess about IC too. I try to learn all I can about treatments, what to try next, etc. I'm determined one way or another to get better, no matter what it takes. I'm hoping so much the Cyclosporine-A will help me. Have you read anything about it?

I don't like pain much too. Mostly what I hate is that my bladder wakes me up so much at night unless I take a pain med. And Ultram has been working well for me for that, but lately it's been irritating my bladder and last night I felt like I didn't get any relief at all from it. So that really scared me, I had a bad night last night. Maybe I need to go off it for awhile and then try it again. I have that problem with meds, all of them really irritate my bladder. When I tried narcotics full-time, it got to the point where my bladder was so irritated from the narcotics passing out of my system, that they didn't even work anymore for the pain, the pain was too huge.

I always flare each morning when I take my BC pill. I think hormones do play a big role in IC but each person is so different that I'm not exactly sure what the answer is. It would be wonderful if we could all just take one hormone pill and be cured of IC, wouldn't it be? Or just one pill of any type. I wish this IC would leave us all alone! I hate it.

Well, hubby is home for dinner now, gotta run, will write more later,
Blessings,
Lori