Uro says its not IC

[Rosalie]

Hi guys
Well I really don't know what to think anymore. I saw Anita Clarke on Thursday to discuss my Cysto/Hydro and she thinks that I don't have IC but Urethritis. My bladder was clear which we know doesn't exclude IC but the urethra was very inflamed.
I didn't know if I should laugh or cry.
I'm a bit stunned, especially after getting onto the net to find out more about Urethritis. It talks about it being an STD. dah.. it started when I was a child!
I said "but I have just gone to my first IC meeting!" She reckons that it is all so very similar that whatever works for IC works for this. I guess its like IC in the urethra. Still, I feel a bit wierd now.
That also could be the Endep I started taking last night. I slept in till 9.45am. Should have headed off to work at 8.15am. And now I feel very drowsy. Different posts to the boards have suggested that this wears off after a while. I hope so. However, it will take about 2 weeks before it has any effect on the pain.
My first question after her diagnosis was, " is it curable?" She said there have some cases. I'm not sure what to think about her answer. Actually, I'm not thinking to well at all. I seem to be getting drowsier and duller by the minute.
Can anyone tell me their experiences with this drug?
I'd better go before I fall off the chair......... :dizzy:
Rosalie

[andcohen]

wow that changes things for you Rosalie, I have no idea of the other thing you were talking about??????? And like a few of us at the moment I'm feeling a bit :loco: I am going through another crazy stage with my meds lately.. So I wont rambel too much tonight but will get back to you over the weekend & talke to you in more detail
Bye for now
Andrea

[anxious one]

Hi Rosalie, don't know much about Urethritis but sounds just as painful as IC. Keep hanging around the boards though, like she said, what works for one would probably work for the other!

As for the Endep, I had a shocking time with it in the beginning- actually did the opposite to me and kept me awake. Pain and frequency also got worse. I persevered and am now up to 50mg and seems to be doing it's job. Still get the flares but am sleeping better... TOUCH WOOD!!!!! Nadia swears by it- she is onlyon 25mg and she sleeps great.

Does make me a bit ga ga- can't string two words together once I've taken it but ok during the day. I don't wake up at all drowsy. What dose are you on????

[andcohen]

Hi Rosalie,
Just wanted to check to see how you are doing? I guess you are still a bit confused over all these medical conditons???? How have things been? Have you started any new meds? Gee full of questions tonight aren't I, rambeling on & I haven't even had my meds yet! :biglaugh:
I had a phone call from Cherry the other night ( from support group) but I wasn't home, she left a message but no return number. She just said she would like to ask a few things & would get back to me, so I hope she does.
Ok I will be off now, let me know how you are doing & take care
Andrea :flower:

[Rosalie]

Hello Andrea & Sara
I'm feeling a bit better today. The drowsiness isn't as bad today. I must be supersensitive to the endep as I'm only on 10mg once a day. Still getting pain but she did say it would take at least two weeks to have any effect on that.
I felt very strange for the first few days with the diagnosis not being what I expected. It was like I had lost something and that I had no right to the friends I had made on the boards. For so many years I didn't know what I had or how to treat it. Then I found a lifeline here. The help and support was amazing. Sounds like I was disappointed it wasn't IC? You are probably :biglaugh: right now. But I still think of it as IC but only in the urethra. So I don't won't I'll be going away any time soon, sorry! :lmao

Cherry rang me on Wednesday as well. Charlotte is still in the Childrens and no better and Cherry is frantic with worry. She said that they can't give DMSO instilations as it isn't approved for children. Now Charlotte isn't eating as she just vomits anyway. I wasn't able to help her much other than suggest she get on the boards ASAP but if she has, she hasn't logged on.
I told her of my experience with accupuncture and how much it helped and thought it was worth a try. If you want her phone number let me know and I will PM it to you.
This small world gets smaller every day for me. When Cherry gave me her
full name I recognized the surname. Turns out I went to secondary school with her husbands cousin! And she lives close to one of my brothers.
Rosalie

[andcohen]

I am so sorry that you are feeling a bit :loco: at the moment. It must be very confussing for you. Are there any other meds that you can try?
And don't worry about not officially having the IC name, you will always be a special part of my IC friends :) Hey look on the bright side mabey there is a cure for this Urethritis thingy????? One can only hope. I will have a look on the internet at it so I can understand it a bit better.
I glad Cherry gave you a call too, at least she was able to speak to someone when needed. If you could pm her number I will try to give her a call.
Talk to you soon
Andrea

[anxious one]

Rosalie, I understand what you are saying and how you are feeling but believe me you still have every right to be here. Even those of us diagnosed with IC have such a variety of symptoms, we are so different... IC isn't an exclusive members only club and I think we can all support each other here regardless of what our exact symptoms/ illness are.

Hope the Endep is working for you, I still have pain and I'm up to 50mg!! :rolleyes: I think I could be knocjked out cold and still someway be in pain. :rolleyes:

Hope all of you have a merry merry xmas :grouphug: :kiss:

Sara

[deviation72]

Hi Rosalie,

I totally agree with what everyone else has said - you are more than welcome here and we would love you to stay.

Hope you are well, despite the disappointment of the last week or so...

[Rosalie]

Thanks guys. I think that I'm adicted to the boards anyway. Always looking for any new ideas on how to cope with this sort of pain. I've had such great advice , very helpful.