View Full Version : Just Diagnosed
A month ago I was diagnosed with IC. I can't believe how miserable this makes you feel. I especially hate sitting at my desk as a medical transcriptionist. I feel like my bladder is being squeezed, and as far as the frequent urination, I feel like taking stock in toilet paper. I've had the cystoscopy with bladder distention, am now going through heparin treatments once a week for the next six weeks. The first one worked fine, but the second did absolutely NOTHING. I'm on Elmiron, Urised, a antihistamine, and a pain killer (which puts me to sleep). Is there any relief on the way? Would like some help in this matter being a newbee on the subject. Any good stories helping to feel better?
10-13-2004, 01:08 PM
Hi and welcome to the board. Take a look at the patient handbook http://www.ic-network.com/handbook/ it has a lot of great information. I think that you will find that each one of us has to work with our docs to find what works best for us. There isn't a one size fits all with this disease. The good news is that eventually many of us get some kind of relief once we learn what triggers our flares and what helps calm them down. I hope you find your personal combination of treatments soon. Good luck.
Thank you for the info about the ic-network handbook> I really appreciate any input I can get on this.
Most of us do find ways to manage IC and there are lots of things to try. The boards are like a gold mine rich with uplifting stories, differing treatments and their successes and boards for almost every aspect of IC and it's impact on your life. Plus, this is one of the most caring online communities you could possibly find. Very supportive of each other in this struggle.
It sounds like you have a great doctor there! Looking for what works for you will take a while and having a supportive doctor is very important. What may help almost immediately, unlike the meds, is working through the IC diet. Take a look in the online handbook linked above and in it you will find the diet. In addition to the diet, try Tums or Prelief to help reduce the acidic nature of the urine.
Changing what you wear may also give you some relief. Try not to wear things that put any pressure on your lower abdomen or pelvic region. I have ordered one of the special pillows sold on this site that sit you up in a way to reduce any pressure upon the pelvic region. I'm hoping it will help.
You can try heat or cold to the areas that hurt, some find one or the other very helpful. And some alternate the two. I finally discovered, after using heat and hot baths stopped working, that cold truly gives me
long lasting relief. Although I don't work any longer, I do sit a lot and sometimes it seems to me that sitting in itself can cause pain. So, when pain starts, I sit on an ice bag and it really helps.
Enlist your friends and family as a support group for you. You may need to educate them, but the more emotional support the better.
Welcome!! :welcome: Glad you found us!!
10-13-2004, 02:06 PM
:hi: and :welcome: to the ICN family we are glad you are here.
I do agree the handbook is a great place to start please also check our the ic diet while you are looking at the handbook you will be amazed how helpful the ic diet can be some people control there ic with diet alone :)
I however take heparin treatments daily at home they have been a blessing for me so please don't give up on them yet you may be amazed by the time the six treatments is up.
We all are so diff. one thing doesn't work for all but at least we do all have something in comman here we all have IC we all support each other and care.
if you need anything please let us know we are here for you.
sending you hugs and prayers
10-13-2004, 04:29 PM
We all know what you mean about how miserable IC can make you feel. Who'd have ever thought a simple bladder could be the source of such grief?
The other ladies have pretty much covered things, so I'll just say welcome! I hope you soon find treatments to make you feel better!
:welcome: There are many positive stories out there, MLK. You will find that most people posting here are still searching for the treatment(s) that will help them, but MOST ICers do find treatments that help them lead fairly normal lives.
I feel really good most of the time now. It has been 3 years since my diagnosis and my uro and I were able to find a medication combo that has worked for me. I hope this happens for you, too. Just hang in there - it can take some time --- but don't give up hope. :)
10-14-2004, 01:35 AM
:welcome: to the IC Network. You have a very challenging job! I spent 25 years working in a major hospital and I always wondered how the transcriptionists ever managed to understand the dictation when some doctors talk so very rapidly.
You've been given some good suggestions --- especially the IC pillow idea. I have one at my computer and one in the car and it really helps.
Elmiron can take up to six months or longer to be effective so I'm glad you have other treatment options that may help in the meantime. It may take a few weeks for the heparin to kick in too so hang in there. I'm glad you have some pain meds.
Sending warm healing thoughts,
10-14-2004, 04:30 AM
Hello and welcome, IC is very frustrating and has even taught me patience because this is not a quick fix type of thing. Good luck with you pain mangament.
Thank you so much for your wonderful story. I do believe there is light at the end of the tunnel for me. You are such an inspiration. I too am going to stay on the Elmiron and have had no side effects (yet, okay a little drowsiness from one). I am going to have my 4th treatment on Tuesday, two more to go. Hopefully between them, the Elmiron and other meds I will start to feel somewhat better. I am then going to have to try to keep a diary of the foods I eat. Thanks again, I really enjoyed your story.
10-15-2004, 10:22 AM
:welcome: :hi: .. here you will find a wealth of info.. and support that is neverending.. I am glad you found us..
10-15-2004, 06:32 PM
Hi MRK! :welcome: to the ICN!
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.
Let me know if there is anything I can do for you! I hope you have luck with treatment ....remember it isn't only our doc's job!.....so glad you found this site!!!
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