newly diagnoised and don't know a thing

[michie]

undefinedundefinedHi my name is Michelle and i'm 32
i was recently told i have I.C. I have had problems with my bladder for little over a year. I have been treated for bladder infections that I rarely test positive for. Antibiotics never seem to work, I have blood in my urine all the time infact i have never tested negative for blood in my urine. I had always assumed that i had sever bladder infections and just kept going to the doctor 4 more of the same treatment. I finally got fed up and decided to see a new doctor (a urologist) he did all the same test the others have done and i tested negative for vernerial diseases, vaganitis, cancer, ect....in October he did the cystoscope and bladder dist. which he said at the time i was getting another bladder infection and gave me more antibiotics and sent me home feeling depressed and disgusted with myself and thinking i was crazy and maybe i was bringing all this upon myself. Last week I got a bad bout of it and call the dr. the nurse asked me to come in and give her a sample that the doctor was out but she wanted to test my urine. I went and waited for the results which (no big surprise) tested negative for infection and only showed blood in my urine. I got upset at this point and couldn't understand why i was the only one who seemed to think this was a big deal. The nurse the told me that this was normal for someone with I.C. I asked what it was that the dr hadn't said that i had anything. she gave me a brief discription of the swelling of the bladder wall ect. and told me i could have a cream injected into me once a week but the procedure was very painful. I came home more upset then before now i knew i had something but didn't know much about it, i was still is horrible pain and my doctor had neglected to tell my husband and i that i even had I.C. the next thing i did was get on the internet and find all the info i could and that landed me here and thanks to you guys i have learned alot more about whats going on with my body

[Dixiefireball]

:hi: and :welcome: to the ICN family.
you need to check out the I.C diet you would be shocked on how many foods and dranks can cause us to hurt you can find that at www.ic-network.com/handbook you can also read about many treatment for I.C.
I use heparin and marcaine a cocktail treatment that goes into the bladder to help it
many people use a drug called elimron. that also helps heal the bladder you take elimron by mth. you may want to talk to your doctor about this drug the down fall its can take up to six mths to a year to work.
heparin goes straight into the bladder and works faster.
others use a treatment called dmso. you can read about that on the website i gave you also.

You will find lots of support and love from this website. we are here for you and we do care! ask all the question you need.
sending you much love and prayers
Rhonda

[VickiB]

Hi michie and welcome!

I'm sorry you have IC, but we're glad to have you with us!

Please do check out the diet, as Rhonda mentioned above. For many of us, that one step made a major difference in our symptoms.

I'm a bit astounded that your doctor had found IC, but neglected to tell you or your husband about it! -Or give you any treatment for this! It sounds like an appointment might be in order to talk to him about his findings from the cysto/hydro, and possible treatments options.

Again, welcome! I hope you're feeling better by now!

Vicki

[michie]

thanks it blew us away when we found out that he neglected to mention this to us i printed some diet info earlier and am reading about it now. I think were still pretty much in shock by the whole thing. I have an appointment with my doctor on tuesday and am presently looking for a new doctor hopefully one who has dealt with this and can be straight forward and honest about it with me. I think the scarry part is not knowing what tomorrow holds does it get worse or better or stay the same i've ready that it gets to a point and kind of evens out and stays there coming in flares and remissions. I'm glad to finally have a name for whats wrong but very confused on how i got it i guess thats the big question why me? also i was reading in another thread about patches of dry skin or rash and was it related. I have the same thing on my back that comes with the flares.

[kelly McC]

Hello,
Glad you found us! The handbook has alot of information glad you were able to look at it. There is a section in the handbook for doctors take a look for your area. There are many treatment options available you can also check those out in the handbook. Make a list of questions you want to ask the doctor.
Huggs,
Kelly

[ibtracy]

:welcome: to the ICN Family. You'll find a wealth of knowledge and support here. Someone's always here for you here. It's a safe, secure and loving place and who knows you might even meet some close friends that you'll talk to everyday, I have and love the entire ICN Family. I highly recommend you buying the book, THE INTERSTITAL CYSTITIS SURVIVAL GUIDE, it's a wonderful resource to explain IC and all the possible procedures or treatments you might endure in the near future. It's worth the money or check your local library to borrow before purchasing if money is an issue. I was diagnosed in March 2003 and I still go back and reference it from time to time. Hang in there...

Tracy K.

[bunnymoomoo]

halloo michie, welcome! i'm sure you are feeling very frustrated, not only because you have these symptoms that aren't being relieved, but also because you're doctor wasn't very supportive! not even telling you about IC ... *shakes head*

the dry skin/rash you are talking about, is it maybe allergies? many people with IC also have allergies. it's possible to be allergic to certain foods and your bladder be even more sensitive to those foods. sorry i can't be more helpful T_T

i hope you find some relief soon and don't forget to check out the IC Handbook!

~ bunny ~

[kadi]

Hi Michie
I can really relate to your post. One of my first doctors told me that another doctor had been reluctant to diagnose IC because "it's a terrible disease and all the treatments are painful." My thoughts were, "Well, if that's what I have, maybe I should know." and since I'd already seen this website, I already knew that the "all treatments are painful" is outdated information. Elavil (tricyclic antidepressant used for pain management & anticholinergic properties), Atarax (antihistamine), and Elmiron (to recoat the damaged bladder lining) are all oral medications. They are the mainstays of IC treatment and many many patients find relief from one or a combination of them.

In my case, I am unable to take Atarax or Elmiron, but I have gotten considerable relief from the diet, Elavil, birth control pills, and DMSO cocktail instillations . (5 meds put into my bladder & held for 20 minutes). The DMSO instills are not comfortable, but the improvement I feel for the 4-6 weeks afterwards is worth a couple hours of discomfort (which is nowhere even near the pain or frequency I had before diagnosis).

I highly recommend finding a doctor more knowledgeable (and willing to work in partnership with you) and also recommend you read the Patient Handbook section of this site. The New Patient Kit on sale in the ICN bookstore is worth checking into. I still use the books from it whenever considering a change in treatment.

Wishing you better days soon and a healthier, more hopeful 2005!

[SharonA]

Hello, Michie... :welcome:

You have already received some very good advice. I do want to tell you that there are many treatments and/or meds out there for IC. There is life with IC. Many of us have found what works for us and so can you. It may take some time to discover the ones that help you, but is is possible. I wish they were the same ones for all of us, but that is not the case.

I agree that you should look for another doctor who will work with you and give you the medical care you so deserve.

Stay with us and continue to post. We are here for you and will help you along the way as much as we can.

:grouphug: and :kissing:

[michie]

thanks for all the great advice i'm compiling a list for the doctor tomorrow. hopefully something good will come of it. I was wondering if any one els had the blood in their urine all the time the way I do. I've been reading the handbook and a few other things that I've gotten my hands on but i have yet to read that or maybe i'm just not understanding what im reading its been so much to absorb. thanks michie
ps i'll update you if tomorrow brings any new changes :bonk: :bow:

[michie]

Thanks I'm going to make an appointment with the dermotologist and get an all around allergy test and see what he thinks hopefully its just an allergy. I appreciate you taking the time to help with this and hope you and your daughter are doing well.

michie

[Dixiefireball]

i always have blood in my urine i can't always see it but they can when they test it. :( hope all goes well tomorrow i will be looking for an update from you.
please know my prayers are with you.
Rhonda

[michie]

dixifireball
thanks so much I looked and looked and couldnt seem to find anything about
blood in the urine and was worried maybe it was something els and was going
to cause this to just get worse. I will let you know what he says hopefully he'll do something. He keeps perscribing pain pills which I fear taking because of the addictions they cause. i know there has another way and i think its to early to go to exteam measures. I plan to try the diet and have already cut most of the foods and drinks out already. thankfully I quit smoking 2 yaers ago so thats no worry. I have gone on about me but how are u you seem so confident and sure of every thing its great to know u can go through something like this and give so much hope to others thank you :woohoo:

:) michie

[Dixiefireball]

first off try not to scare your self about taking pain medicine you are lucky you have a doctor who is willing to give them to you without thinking your a drug head :(
Please stay on top of things don't let your pain get to bad or it will be hard to get under control. You are not adt. because you need pain pills as long as you take them only when needed and the way your doctor said too.
you may have to use your pain medcine more until you find the best treatment for your self.
I had a wonderful 18 mth remission but i'm not in remission now i'm fighting to get it back and know i will.
This family here has kept me sane so to speak and kept me believeing in my self when i felt like all odds was against me.
before i.c i never took pain medicine but i do have pain medicine now i take perocets 10.325 klonopins 1 mg which is great for relaxing the bladder! it also helps with sleep i don't have to get up half as many time threw the night to pee. and it also helps keep your pain medicine in your system longer.
i also take heparin and marcaine cocktail treatments which helps coat my bladder and numbs my bladder i find much relief in the cocktail treatment.
keep fighting hon stick to that diet. you will over come this just believe.
sending you hugs and prayers
Rhonda

[michie]

well Im back from the doc. He wants me to go into the hosp. on thursday the 13 for another cysto/hydro. He says he didnt tell me because he was hoping i would respond to meds. and that he was wrong about what i had but he wants another look to be positive what ever that means. i guess we will see :rolleyes: i think i'm hoping against hope that this is some crazy night mare and i'll wake up very soon. :loco:
Rhonda.
good luck i know you'll achieve your remission, its just around the corner. I want to thank you again for everything without this website i dont think I would be able to get through this. You have been such a great help and I know that you must have an angle :angel: sitting on your shoulder for you to be the wonderful help that you are to so many of us who are trying to find our way in the dark. :grouphug: :kissing: michelle

[Sarojini]

Just wanted to extend a belated :welcome: to the ICN to you!!! I really hope you can find some treatments that work for you soon... there are many out there, and there is no need to suffer. Good luck to you :grouphug: and remember we are all here for you when you need support and love!

[Rosalie]

Michie
Just wanted to say Hello and that you have come to the right place for help and support. It seems a lot to take in all at once but you will eventually find what works for you.
Rosalie

[michie]

thanks i plan to start with the elimination diet after the trip to the hosp. on the 13th. I guess its time i get some control back and with any luck ill find it soon.

[michie]

thanks if i have to have ic i couldn't have found a better group of people to help me through it. Its hard to talk to family because like me they have never heard of this until i found out that i had it.

[kittymom]

Hi and welcome.. ;)

I had the same procedure 2 weeks ago.. I was very sore but it seemed too help a little bit. I don't want to JINX myself. Good Luck

[michie]

thanks I found i'm allergic to a soap we were using it was the same brand different scent an I didnt realize that we grabbed the wrong one.