View Full Version : hello. first time poster on the ic board.
09-10-2004, 06:37 AM
hi, i have had ic for some time now---at least three years.
in early 2001, my first urologist suspected that i had ic. he performed two in-office cysto's. he origianlly didn't see any ulcers or inflammation. i didn't know at that time that the in-office procedure would not show what is needed to diagnose ic. he put me on 2 elmiron a day anyway. i didn't like the medicine so i stopped taking it. he gave me bextra for inflammation. he was not a specialist in ic. during the second cysto that he performed, he stated that i had urethritis. he put me on a low dose of antibiotics.
i suspected that he wasn't giving me the truth. or actually, i think he had no idea how to diagnose ic, so i sought out a second opinion. i didn't feel good about his resposes to me, which were very few. he listened, but never really said too much when i told him about my symptoms.
thank goodness i found a new urologist! two of them.
The second urologist performed the cysto under anaesthesia. the exam showed that i had/have severe petechial hemorrhaging of my bladder. the picture that he took looked like i had measles in my bladder. yikes...
this doctor referred me to his associate. this third doctor is one of only two doctors in austin, tx who specialize in ic. i had no idea that most urologists don't specialize in ic. they don't even know much about it.
this doctor sugggested that i take up to 9 tablets of elmiron a day. i tried the elmiron again with the second doctor and i got a really terrible heacache for days with spasms of the neck and back. so he suggested that i take antioxidants--aloe vera & quercetin with bromelain. i also found that coq10 & bovine lactoferrin are good supplements, too. this doctor is really great because he is open to natural remedies.
i will not do the bladder installation therapy for fear of many side effects. my body is too sensitive. i have bought many books on amazon about ic. there are many theories about what will help and how woman get this condition. i know, some men get it too. sorry guys!
the ichelp.org or ichelp.com web page really helped me out a lot. i am filing for social security. my new doctor wrote me a letter stating that i was disabled. i sure hope it does the trick with the ssa office. the ica of america also confirmed that my current doctor is highly respected. if anyone has concerns about doctors, please call the ica of america in maryland. they can also refer you to a doctor in your area.
i never knew that all of my pain and fatigue went along with ic. i am sure glad that i had the cysto under anaesthesia for confirmation with a color picture to verify.
i know that i will never feel 100%, but i'd like to have more good days than bad days.
any successful claims on ssa, please respond. thanks.
oh, i use coffee tamer and prelief in foods and liquids. it helps a little.
we do have a ic therapy group in austin that i have attened. thank goodness there are others out there that i can talk to face-to-face. some have light ic and some have it as bad as me.
:toilet: :toilet: :toilet:
thanks for letting me express myself about my ic.
any responses are appreciated.
09-10-2004, 07:16 AM
:hi: :welcome: I am so glad you have found good doctors. Good luck with the Social Security. I hope you are able to qualify. I am also glad you have found a support group. Finding people who understand what you are going through is such a big help. I was so glad when I found this site. Most everything I know about IC, I have learned here. The people here are so helpful and supportive. :)
09-10-2004, 07:17 AM
hi and welcome,
Here is a link to the handbook http://www.ic-network.com/handbook/. Good luck with SSA.,
09-10-2004, 07:32 AM
We are in the process of moving there in the next year, and my sister also has been having the same problems as me and I fear she may have IC as well, but she couldn't find a good urologist.
09-10-2004, 08:31 AM
dr james reeves is his name. he is suppose to retire this year, though. i understand there is one other doctor here in austin who specializes in ic. i will find out his name. my email is firstname.lastname@example.org. the ic meeting is on monday. i will get his name. eventually, i will have to go to him when dr reeves retires. the other guy is suppose to be good, too. i got into see dr. reeves because i saw his associate, dr horan. like i said, these urologist don't all know ic. they think they do. lol....
call the ic of america in maryland from the ichelp.org web page for a current doctor referral in your area.
good luck all!
Hey, welcome!!! :welcome: Glad you found us and glad you have such a great doctor. I was really surprised to see he had you trying 900mg of Elmiron a day?! Wow...
I am glad you've been able to find some other ways to find relief. There are a lot of people here who are interested in a more "natural" appraoch to healing their bladders. hopefully you will hook up with them at some point on the boards.
Again, welcome, andshope to see you around. :)
P.S. If you go to the board here specifically about SS you will find lots of info about applying, etc.
09-10-2004, 09:15 AM
Too bad he's retiring. Can you email me when you find out the other name? I would really like to get my sister in to see someone. I was down visiting last month when she went for an appt. with a urologist for the first time and they didn't even run ANY kind of tests, whatsoever on her, just put her on ditropan. I even asked them about the Potassium Sensitivity Test and they said it wasn't accurate. My sister is still miserable, I feel so bad for her, so if you can find out that name, I would be much appreciated. Thanks a bunch.
You could always just leave a private message for me on this message board. :)
09-10-2004, 09:32 AM
the doctor stated that i would have to take up to 9 tablets a day because my inflammation/hemorrhaging is so severe. i decided against it because i am so sensitive towards meds in general. he didn't push me to take them.
this doctor is really nice. i told him that i was so ambivalent about all the procedures to alleviate my pain, frequency, spasms, burning, etc.
i am currently taking some norco for pain and valium for relaxation of spasms and stress. i have klonopin because i can get agitated if i cannot go to the bathroom. meaning if i am driving and don't know where to go to the potty, i can get pretty nasty to my husband. once i have voided, i am a kitty cat.
looking into buying a potty thru rei.com. someone told me to go to a camping store and buy a potty. rei is the closest type store.
i have had the ic for a long time not knowing what it was that i had, so i have adjusted to staying home or trying not to go places where i am unfamiliar
******ambivalent adj 1: characterized by a mixture of opposite feelings or attitudes; "she felt ambivalent about his proposal"; "an ambivalent position on rent control" 2: uncertain or unable to decide about what course to follow; "was ambivalent about having children"
thanks. i will look for the ss and natural stuff on the boards. :)
thanks for all the replys.
09-10-2004, 10:18 AM
I wanted to welcome you to the ICN. You sound like you're very proactive in dealing with your IC, -that's good! I'm glad you were also able to find doctors who are knowledgeable on the subject.
Hope you find many pain-free days ahead!
09-10-2004, 10:45 AM
yes, i think it is really important to find a urologist who has a specialty in ic. most of these guys deal with men's pee-pee's. :lmao:
thanks for the support.
09-11-2004, 05:11 PM
I was just diagnosed with ic on Wednesday. I have been feeling awful for like 5 years and have been going to many doctors. All of the doctors could never tell me what I had and I thought that I must be the only person in the world feeling this awful. At first it wasn't that bad but definetly uncomfortable. But it was getting to the point that it would ruin my plans to do anything. I finally found a doctor that told me what I had and I was just so excited that there were finally a name for it. She started me on Elmiron and it is expensive stuff. But if it will do the trick I guess that it is worth it. Isn't it??? Does your hair really fall out? I'm scared of some of the side effects and she said I might have to take this forever??? Does anybody know how long it takes to work??? I have lots of questions if anyone happens to know alot about this disease. I am glad that there is a place where there are other people know what I am going thru. I would explain to the doctors and my friends and family how I feel and they didn't understand now finally people that know exzactly what I am feeling..... Any info would be greatly appreciated.
Welcome, I'm not too far from you. I'm probably 3 or 4 hours. I live near Baytown, Tx. I'm also, very greatful for my Dr.!
09-11-2004, 05:51 PM
Hi and Welcome :welcome::welcome::welcome:
shenna n.....sorry you have IC...glad you found us and all the other things you have done to help yourself with this condition! Great Job!!!!! Let me know if I can help you with anything.
hush::welcome: Ask away with your questions! There are a lot of that may know a lot about this disease by now:hiding:Anyway we will start with Elmiron...I think the percentage of people who deal with hair loss is about 20 or so. I did not...but some have. I have heard from a few that say after stopping and starting again the hair loss went away. Also if you get stomach ach or direrhia try taking it out of the capsil and drinking it it usually takes from 4-6 months to work....sometimes longer....very few shorter. You said you were suffering for 5 years so I suspect it will take you atleast 4 months... sorry. I was told too that I would most likely be on elmiron forever. Ohwell.
Let us know if we can help you anymore.
09-11-2004, 07:21 PM
I to know what its like to look and look for the right Dr.I went to 6 different Dr. before i finally found out I had IC. I went through cysto with hydrodylation and themI had to have DMSO treatments which I still think was worse than the cysto but in the end it did really help. As of now im getting Acupuncture which is wonderful. I feels like a giant heating pad its so relaxing. I know this post might not be much help but I just wanted to say I know how you feel and I hope everything goes well with you. Hang in there and welcometo the family.
09-12-2004, 02:52 AM
I'd like to welcome you to the IC Network. You'll find a lot of information and support here.
There are very few urologists who actually specialize in IC --- most areas don't have enough IC patients to support a medical practice. I was very fortunate in seeing a urologist who is familiar with IC and keeps himself informed about treatment options. I first saw him thirty years ago when my IC first reared its ugly head and I was diagnosed about six months later.
Elmiron can take up to six months or longer to be effective, but those who are helped significantly will tell you it's well worth the effort. And only a very few experience hair loss.
I encourage you to put yourself on an IC diet. Nearly all ICers are effected by things like coffee, tea, sodas, fruits and juices, tomatoes, and some other foods and drinks. You'll find diet information in the Patient Handbook.
All medications, including natural remedies, have the potential for side effects, Even the common aspirin and tylenol. We have to weigh the potential benefits against the possible side effects and make our decisions about medications based on that.
Sending healing thoughts,
09-12-2004, 05:17 AM
Welcome to the boards:) you will find a wealth of info among these pages... I have Ic and I am on SSD, I am one of the few that was approved the first try.. If you get denyed, appeal it! Best wishes to you..
09-12-2004, 07:26 AM
at this point, i am going to stay away from the elmiron. i got a devil headache from that medicine. went off it and the headache finally went away. started it back up, and the darn headache came back. i am glad that it is working for some people. my body is really sensitive!!! :dizzy:
the doctor wanted me to take 9 elmiron a day. i was just taking 2 and got that headache from h-ll...
i am trying to watch my diet and i am taking aloe vera tablets and quercetin. no problems with the supplements so far. have norco (like vidcodin) and darvocet for pain. the darvocet is like candy. really doesn't help much. the valium really relaxes me, too.
have fatigue, joint pain in my fingers/hands, pelvic/back spasms, and just darn spasms all thru my body at times. i told the doctor i feel broken. he said like the man who fell off of the wall, humpty-dumpty. i said, yeah! this dr. reeves guy is soooo nice. just like a grandpa. i love those old-guy doctors. they go slow and they really show caring. :)
of course i have the bladder pain and tenderness. a given with severre ic... :rolleyes:
QUESTION?? to the girls who have had the bladder instillations: what have your side effects been? dmso or heperin (sp). thanks in advance.
still very ambivalent about most of the procedures.
ambivalent: adj 1: characterized by a mixture of opposite feelings or attitudes; "she felt ambivalent about his proposal"; "an ambivalent position on rent control" 2: uncertain or unable to decide about what course to follow; "was ambivalent about having children" :toilet:
side effects --- :yikes:
yeah blue, we aren't too far away. i am just north of bastrop. on i-95, south of us 290.
09-12-2004, 07:35 AM
was/is both sad, happy, and amazing to read!!!
are you still on disablity?
sounds like the device has changed your life.
i, too, am not sure what to do.....
just know that i feel unwell, but too scared to try many of these procedures that have many side effects.
it is calming to know that you also couldn't make a decision on which way to turn.
09-12-2004, 09:43 AM
Shenna, as far as instillations go I had a lot more success with Heparin than I did DMSO....with DMSO I had bad days before good....too many side affects! They were pain, smell, and frequency!. Heparin so far has been an improvement right away. My first day I had some burning right after (which went away in a few hours)....other than that no side affects....I believe it is helping me first week which is way better than DMSO did for me. Good luck on getting treatment that really helps you!!
Let me know if I can help you anymore! ((((hugs))))
09-12-2004, 09:47 AM
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