View Full Version : So the verdict is in...
09-23-2004, 08:33 PM
I have spent the last hour or so crying and I really don't know why because evn though I hadn't been "officially diagnosed" I had pretty much come to terms with having IC. So I thought! I had my visit to the top notch uro today- she specialises in IC, different to the idiot uro I saw back in April who didn't have a clue. Well, she did all the urodynamic tests and went through all my notes and ALL my results and pretty much said straight away- you have IC.
Lile, I sais, I don't know why I am so upset. I guess it's different thinking you probably have something and being told you definately have it. All these thoughts are going through my head:
1) So I will be sick and in pain for the rest of my life
2) this is never ever going to go away
3) I have nothing to offer my husband or daughter- I can't work, I can't have more children (I'm too sick to look after the one I've got)
4) Without me working I can't afford any of the meds and I don't have private cover
5) What the hell did I do to deserve this?
6) Is it going to get worse??????
I've been coming to this site long enough to know I'm not the only one with these problems. I'm sorry for sounding self absorbed and pathetic. I just can't believe this! I feel defeated. I feel completely so full of pain that I want to scream and scream and scream until it goes away.
I'm sorry for this. I thought I would feel so much better once I got the diagnosis. Guess I was wrong! :rolleyes:
My uro basically said there is no med that is considered an effective treatment for IC. She is currently underataking a study in which they inject Botox into the bladder and wants me to put my name down, providing I pass the criteria. Any feedback????
09-23-2004, 10:21 PM
Hello, Anxious One. I'm so sorry that you are feeling badly. This might not make you feel any better, but I'm in the same boat as you. I haven't gotten the official diagnosis yet, but my doctors think that I have IC.
"I feel completely so full of pain that I want to scream and scream and scream until it goes away."
That sounds like a thought from my own mind. It hurts all of the time, doesn't it?
I wish I could help, but for now, all I can say is that I relate to your pain.
09-24-2004, 01:13 AM
I went through all the things you are going threw now. And I'm sure I'll have more bad times where I continue to ask those questions. But, I'm concerned on how your doctor told you that there are no good meds for IC.
I'm new to this as well, so I don't have all the answers but I have done a ton of research on it and the medications they give, plus reading all of these ladies stories give a lot of input as well.
Elmiron, is the best over the counter medication for IC at the moment. I also had the great pleasure of meeting a lady by change who also has IC and to her tell me how she's been on Elmiron for three years and is living an almost normal life was very inspiring! She said "almost" because she eats things she shouldn't sometimes and pays for it but that's her own fault. She said if she kept to the IC diet, she would be normal.
I know that her story is a very lucky one but it is still possible. I'm on Elmiron, 4 pills a day, Elavil 10mg 1 time a day, and on Ditropan XL, 1 time a day. I truly believe these meds are helping me plus I have completely changed my diet. And believe me that was hard! :yikes: I was a person who would eat tomatoes every day like apples. I am also a big lover of wines and I haven't drank it in over 2 months. :dizzy: but, it's worth it.
I'd go back to your doctor and ask why she didn't recommend any of these medications but once to put needles in you????
Elmiron does have the possible side effect of hair thinning but some women haven't experienced at all. I guess everyone needs to decide for themselves what is more important, hair thinning or the pain. No one can make that decision but ourselves.
I hope I have helped you. Please let me know if I can do anything else.
09-24-2004, 01:27 AM
I can relate also, and I'm sure we all can to your pain. You cannot give up!
There are stories here of hope.. Start with your diet and start cutting out trigger foods. Caffenine is a huge thing.. Drink lots of water and then try treatment options. I don't understand why your uro is not suggesting any treatments options besides this new one. There are a lot of people here that are on different types of meds that seem to be helping. Elmiron, Elavil and there are also antihistimine drugs that work for some people. Please don't give up on yourself. I know that things are hard now.. I understand because I was just diagnosed and haven't started treatment yet so I'm in pain more then feeling good. Please don't give up and we are all here to support you.
09-24-2004, 01:36 AM
I'm so sorry you're feeling this way, Anxious One.
I think part of the problem is that you are not being offered any treatments to try by any of your doctors. I realize that you're in Australia, and some of the meds might be different there, but it really seems to me that your docs could be doing more to help you right now -- it seems they all have this dire outlook and are offering you only what we consider "last resort" treatments here in the US, and I think that is having a very negative effect on your mindset.
Have you tried printing out lists of treatments from this site (there is even a drug glossary on the home page that lists drug names and what they are called in countries besides the US) and taking them to your doctors? I have a hard time believing medications like hydroxyzine (Atarax or Vistaril in the U.S.) or amitriptylline (Elavil in the US) are unavailable in Australia, and these two meds have changed the lives of many IC patients around the world. In fact, I just looked at the drug glossary, and in Australia, Atarax is available under the exact same name (Atarax), and amitriptylline is available under the trade names Amitrol, Endep, and Tryptine. (I'm getting this info from http://www.ic-network.com/glossary/ by the way.)
I really think you should bring this info to your doctors and ask to try some of this stuff first, before you do Botox. A lot of the meds have changed peoples lives, and I'd hate to see you undergo an experimental procedure before you've even been given a chance to try them!!
As for whether or not you'll get worse, probably not -- IC is not considered a progressive disease, and indeed most patients stay pretty stable throughout their lives. There is a tiny percentage that do progress, but it's rare.
PLEASE do some research and go back to the doctor and find out why you are not being given the chance to try oral meds or instillations first.
Good luck :grouphug:
09-24-2004, 02:34 AM
I am sorry to here that things went so bad for you. I just can not understand why the DR is not prepared to try other meds such as Elmiron or even DMSO Have you had these before? I asked my DR in adelaide about the Botox & he said that whilst they are given reasonably good results now that the longer & longer you use them the less effect they will have. No different from how they have them in their face, works fine for the first few then little improvement as the treatment goes on for longer. I don't claim to know alot about it though, only saying what I was told. So I suppose good for a short term fix not long term.
I agree take a print out of the drug listing on the site to your DR get him to look at it. All he has to do is enter the drug in his computor & it will tell him if it is available her in Australia. I did this with my DR & we come across a couple & some are just under different names.
Did you get my PM I had sent you earlier today.
Hang on through the tuff times girl we are all here for you. Anytime you need a chat just let me know. As you have discovered my PM usally go on & on so I don't mind a chat.
09-24-2004, 03:12 AM
:grouphug: :kissing: Jen gave you very good advice. Please do as she suggested. Don't give up trying to get help. There are many treatments that may help you.
When I was first dx'd, I pretty much felt the way you are feeling right now. If we are all honest about this, I think most of us have had these feelings at one time or another. It took me a while, but I did find the treatments that helped me regain my life. I take 25mg of Elavil at night and have done so going on 3 years. I also watch what I eat and drink and use Prelief. Most days I am pain free and am able to forget that I have IC. There are those times that my bladder gives me a reminder that it is still there, but the pain is nowhere close to what it once was. Please get involved with your health care and take charge. Don't let doctors dismiss you. There ARE treatments and there is HOPE. :thumbsup:
09-24-2004, 03:54 AM
You're expressing some of the same feelings I had when I was diagnosed with IC almost 30 years ago --- I was relieved to know what was wrong, but at the same time upset about having IC.
What I have found is that, with treatment, I feel good most of the time. I do have to avoid some foods and drinks --- and I can tell you where most of the restrooms are located in my city --- but I do live a normal life.
IC is not considered to be a progressive disease; only a very tiny percentage of IC patients do get worse.
Sending warm healing thoughts,
09-24-2004, 11:35 AM
My uro was very nice and seemed to know what she was on about, but she honestly said, and if I can remember her exact words, "There are many medications available to IC patients but none are proven effective. I have had no success at all with Elmiron and wouldn't recommend it."
She also pointed out that as none of the meds are on the PPBS over here, they are all hideously expensive and as I do not have private cover I wouldn't be able to afford any of them. She did suggest DSMo installations (Is that right?) If I do not want the Botox but I will have to travel a 4 hour round trip weekly to get them and she can't promise they will work. She said she had never heard of Elavil.
I feel so discouraged because this woman is the head of the IC association in Australia- honestly, if she doesn't know what she is on about- who does??
The thing that scares me with the Botox is that she is worried hat in my urodynamic tests I did not empty my bladder fully- the Botox could work "too well" meaning I may not be able to empty my bladder at all and I will have to be catheterised twice daily for up to a year! :yikes:
I really don't know. I am so down about this. Like I said, I was glad for an answer but honestly was hoping for a different one I guess!!
Thanks so much for taking the time to write to me :kiss: :grouphug:
I think I will at least make an appointment with my Gp who is very good at explaining things and take it from there.
09-24-2004, 11:51 AM
I'm sorry your in so much pain. The shock is quit scary. I believe I'm still going through shock. I have been calling out so much from work lately. I just feel sometimes like rolling over and dying but you have to get up and just move on. IC is horrible, but I just think that I've managed to live with it for 8 years and not know what it was. I just have to keep on going. IC takes all the fun out of life. Just try to not let it get to you. It's hard, but you feel so much better. Chelsey
I HATE it when I hear uros say they haven't seen Elmiron be successful!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Drives me absolutely C-R-A-Z-Y! There are many of us out here who now lead pretty normal lives thanks to Elmiron. Oh well....
Anyway, please don't see the diagnosis as the end of your life. Many, many, MANY of us feel good again. I promise. Yes, some people absolutely don't get to that point, but many of us do. You just don't always read about it here b/c people generally disappear from the boards when they reach that point of feeling good. :(
Don't lose hope, OK?!?! :kissing:
09-25-2004, 09:01 AM
Sara, I'm so sorry you're in this position! As others have said, your feelings of discouragement with diagnosis are fairly common. I remember finding this site before I was diagnosed, thinking that's what I have, yet hoping with all my heart I was wrong! Still, when I heard "IC" from my Uro I felt devastated because of the same reasons you listed in your original post. Yet today, through medication, diet, and a bag full of coping tricks (many thanks to this site!), my life is almost normal again. Don't give up hope!
I'm wondering if you can see another Urologist? This lady may be the head of the IC Association there, but that doesn't neccessarily mean she's 'the best'! Sounds to me like a second opinion is called for!
Hang in there!
09-25-2004, 02:04 PM
Sara, I am sorry you have IC....do not loose hope. This may be one of the hardest if not the hardest challenge you have to face.....but that does not mean you will not find a way to cope and live and grow and learn in ways that turn out to be good.
:kiss: :pray: :grouphug:
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