I think I have IC and need treatment

[orbeck33]

Hello all...this is my first post to the site.

I was treated for a number of years for recurring UTIs. The treatments (antibiotics and OCT pain meds like pyridum) worked for awhile. I got UTIs so often that multiple drs told me to take an antibiotic as a profolatic each time I had sex. I did that for a while for 2 different years.

In the past year things have changed for the worse. Antibiotics no longer treat what I now think of as flare ups, not UTIs. The pyridum stopped working for the pain as well. 4 months I've had three bad flare-ups and the one I'm in now is by far the worst. I've been in bad pain for 5 days and it doesn't seem to be getting better.

I don't have health insurance right now (I'm a grad student with little income and the crappy insurance I had ran out in December without my knowning). I'm afraid if I see someone now and get diagnosed with anything then it will qualify as a "pre-exisiting condition" and I won't be covered for treatment of the condition for one year (this is what the insurance co. told me). I was going to try to work something out with Dr. Kaufman here in NYC (who i learned about through this site) but GHI (which is the insurance I can get through school) is the one insurance he doesn't take!

Does anyone have any ideas for me or know of any other good urologists in NYC? I saw a gyno-urologist in brooklyn a few years ago who I liked (I had oxford insurance at that time) but I cannot find him online (and can't remember his name).

I'm willing to try to go to to dr. and pay out of pocket at this point and hope they'll hold off on a formal diagnosis until I get insurance (which by the way isn't available until October). If anyone has any advice I would love to hear it. I'm at a total loss and in horrible pain and feeling rather scared.

Oh, I've been working with an herbalist for the past 2 months. We're on our third treatment. the first 6 days of the treatment (chinese herbs) were like a miracle. I felt 100% normal for the first time in months. then 6 days into it this most recent flare up happened. I'm not sure whta the deal is. i ran out of the pills while away on vacation but he's ordering more and wants to have me take a higher dose of them. I'm willing to try it as I'm desperate.

I stopped eating the 5 bad foods on Saturday (after visiting this site). I haven't had any liquid except water since then and am avoiding the other problem foods. Hasn't helped at all yet...

Thanks,
Orbeck

[Sarojini]

:hi: and :welcome: to the ICN boards!

Whew, it sounds like you are going through a lot. First off, I know exactly how it goes with graduate school insurance -- I got my Ph.D. at UCLA, and their insurance for grad students was pretty lousy. You had to be seen at the student health center for a while and they rarely would give a referral -- and even if they did half the doctors (even at the UCLA Medical Center!!!) wouldn't take the insurance. Plus, I had mine run out on me one quarter and it was lousy.

First off, give the diet a little more time -- have you checked out the full description of the diet in the Patient Handbook yet? There may be some weird food you're eating that is on the "no-no" list besides the "Five Worst." It could be that eliminating that thing could help even more...

While I'm not from New York, I do know that Dr. Robert Moldwin is there and he is supposed to be an excellent IC specialist. He has written the "IC Survival Guide" and other books, and is a guest lecturer in our chat room sometimes. I have NO idea if he will take the insurance you've got, but it may be worth a try.

[orbeck33]

Thank you thank you thank you. I'm going to look him up.

I did look at the more detailed list of foods and have been trying to be really careful. Today I ate carrots and hummus (is hummus ok?) and oatmeal. I'm avoiding any kind of acidic foods (fruits, tomatoes, etc), I've only eaten mozzerella cheese, etc.

I guess I just want to be seen by a dr. But it seems like if I do have IC there isn't going to be a whole lot he or she can do for me. It seems like it's something one learns to manage slowly, no?

[KokoBean]

:welcome: by the way!

I would say that IC is something we learn to cope with but treatments help keep it managed as does the diet and other therapies. I find that my urologist helps me a great deal. I was recently diagnosed but I have found relief from hydrodistention and an instill so far. I just started Elmiron and I am hoping that will help me manage my symptoms more.
I also see a chiropractor and use a TENS unit and of course a heating pad and chamomile tea.
I wish you the best of luck! Hope you feel better.
steph

[orbeck33]

Thank you both. I am having such a hard time right now. I just found out that I have to move by Sept. 1 (found a place, thank goodness) and school starts again in Sept. I'm trying to be accepting but feeling sort of panicked. I jsut called Dr. Moldwin's office and they don't take the insurance I can buy in Oct (GHI). I guess I'll just look for a urologist in NYC. If anyone knows of a good urologist in NYC please let me know and I'll see if they take GHI.

This site is such a blessing. I didn't know abotu the foods, hot water bottles, anything until coming here. I'm going to go home and try some baking soda in my water. I've already used a hot water bottle and it got me through the last two nights.

[KokoBean]

You must be in a lot of pain???
I am in school too. I just finished my teaching degree but now I am going to nursing school beginning this fall. I am so nervous now b/c of the IC. I find it helps to remind myself sometimes that I am sick and allow myself to relax and pamper myself. I hope you find a good doctor that takes your insurance. One possibility would be to call that insurance and get a list of participating uros. (If no one here has any recommendations.)

Warm wishes...:angel:

Take Good Care of yourself!

steph

[1blessed]

Hello all...this is my first post to the site.

I was treated for a number of years for recurring UTIs. The treatments (antibiotics and OCT pain meds like pyridum) worked for awhile. I got UTIs so often that multiple drs told me to take an antibiotic as a profolatic each time I had sex. I did that for a while for 2 different years.

In the past year things have changed for the worse. Antibiotics no longer treat what I now think of as flare ups, not UTIs. The pyridum stopped working for the pain as well. 4 months I've had three bad flare-ups and the one I'm in now is by far the worst. I've been in bad pain for 5 days and it doesn't seem to be getting better.

I don't have health insurance right now (I'm a grad student with little income and the crappy insurance I had ran out in December without my knowning). I'm afraid if I see someone now and get diagnosed with anything then it will qualify as a "pre-exisiting condition" and I won't be covered for treatment of the condition for one year (this is what the insurance co. told me). I was going to try to work something out with Dr. Kaufman here in NYC (who i learned about through this site) but GHI (which is the insurance I can get through school) is the one insurance he doesn't take!

Does anyone have any ideas for me or know of any other good urologists in NYC? I saw a gyno-urologist in brooklyn a few years ago who I liked (I had oxford insurance at that time) but I cannot find him online (and can't remember his name).

I'm willing to try to go to to dr. and pay out of pocket at this point and hope they'll hold off on a formal diagnosis until I get insurance (which by the way isn't available until October). If anyone has any advice I would love to hear it. I'm at a total loss and in horrible pain and feeling rather scared.

Oh, I've been working with an herbalist for the past 2 months. We're on our third treatment. the first 6 days of the treatment (chinese herbs) were like a miracle. I felt 100% normal for the first time in months. then 6 days into it this most recent flare up happened. I'm not sure whta the deal is. i ran out of the pills while away on vacation but he's ordering more and wants to have me take a higher dose of them. I'm willing to try it as I'm desperate.

I stopped eating the 5 bad foods on Saturday (after visiting this site). I haven't had any liquid except water since then and am avoiding the other problem foods. Hasn't helped at all yet...

Thanks,
Orbeck
:welcome:
Just wanted to say hang in there been there done that. I know that every time I have Sex I start to have bladder spasms for about a week each time. A cuople of weeks ago I went through it the Dr. put me on PROCED/DS for thae spasms works well.

[orbeck33]

Thanks KoKo. In my better moments I take this as a sign to slow down and focus solely on myself. I'm studying to be a psychologist and spend a lot of time worrying about friends, patients, professors, bosses, etc and not enough about me. But not having much $ and not having insurance and feeling so much pain (and not getting paid if i don't show up at work- no sick days!) is leaving me in a panic.

[KokoBean]

I really hope you can find a doctor near you that takes that insurance you will get.
Finding a good uro should help a great deal. A good uro WILL help you with your pain and/or discomfort.

Best wishes until you get insurance.

How much more schooling do you have?

Since you are interested in pyschology.....what do you think about stress (emotional and physical) making IC worse?

I really believe my IC sprung on when it did b/c of emotional stress....I believe I had symptoms already anyways but the emotional stress made it all worse.
My uro told me too that stress will only make my symptoms worse.....interesting huh?

Well I hope you can find some pain relief. Warm baths and ice packs help too! Try some chamomile tea for relaxation....it really helps and it tastes so good.

Glad to meet ya,
steph

[orbeck33]

i think stress def. makes my IC worse. The first 6 days of my vacation I felt AMAZING, then when it got closer to the end I had this flare up. I've had headache and stomach problems all my life too- I think I hold a lot of my stress in my body. Thing is, it's so bad it can't JUST be stress. I do yoga, work out, eat well, get 8-9 hours of sleep. I try to incorportate deep breathing etc, into my day. But being broke, moving and being in a phD program are things that cause a lot of stress! I can't wait until this flare is over and I can start to get some control over this situation.

I know you all aren't drs but I'm wondering if waiting to see a dr. in October when I know I'll have insurance is a horrible idea. I know I'm in pain now but I'm not so sure a dr. will be able to relieve that right away.

[KokoBean]

I would say the sooner you can go, the faster you may find relief, but this is just from my experience. I found out that I had IC in the beginning of June and my uro and I are still trying to find me relief. All of the IC treatments seem to take time to kick in if they are going to help.
However, I don't know what I would do without insurance. See I don't have continuous pain....rather I have frequency/urgency everyday.
If I was in bad enough pain.....maybe what I would do is find a really good primary care doctor to help out until you get insurance. The primary care doctor will cost a fraction of what a urologist will. Maybe the primary care can help you with the pain until then and your uro can give you your definitive diagnosis and treatment options.
Hope that helps some.

Hope you feel better soon. Did you read some of the threads about flare coping strategies? That may help too.

Best of luck and warm wishes,
steph

[sacausa]

Today I ate carrots and hummus (is hummus ok?) and oatmeal. I'm avoiding any kind of acidic foods (fruits, tomatoes, etc), I've only eaten mozzerella cheese, etc.

Hummus is usually not okay. It often contains lemon juice which can wreck havock on the bladder.

There are quite a bit of people that flare from oatmeal too.

[sunshinegurl]

Is it true that if IC isn't caught in early stages it will progress?.ive chatted with someone who said the doctors didn't find hers in time and now theres no help for her now.....her bladder can now only hold a ounce of urine...i thought the treatment was to help manage the pain and symptoms not to stop it from getting worse.....does anyone know about this?

[KokoBean]

I recommend reading the thread called "Is IC progressive?" It's very recent and can be found either under "new posts" or "pain management"
Jah started the thread I believe.
From what I read, initial treatment with early diagnosis sounds like a life saver.
Defintitely take a look at that thread if you can.

My from experience, I was luckily diagnosed quickly and began treatment quickly but my uro told me that by starting treatment right away, he was hoping to prevent my IC from getting any worse.

steph