New here but not newly diagnosed.....

[eghtyslady]

Hi all,

I'm new to this board but not to IC as I was diagnosed in 1985 or thereabouts. I had several DMSO treatments and went into remission with only an occasional flare until recently. Recently is seems I have a lot more urgency, frequency, up several times a night, etc. I have to travel some for my job and hate flying as it's a pain always worrying whether you'll be able to use the bathroom during the flight, etc. Also diagnosed with endo 1988, fibroid and subsequent hysterectomy in 1994, fibromyalgia in 2002.

Anyway just went to a new uro and he wants to start me tomorrow on Appell Cocktail instillation(says it's a steroid, with heparin/lidocaine/kenalog. I'm very hesitant as I told him I have a trip coming up on 05/08 and we've schedule these instills starting tomorrow 2x a week until then with the last one before my trip on 05/01. I'm worried that it may make things worse and then I'll really be in a pickle.

For those of you who've had these treatments, do they work? Should I wait to start them until I get back? He thinks it will help me a great deal and I found him through this website and he's supposedly has a good rep.

Any advice is appreciated.

TIA, Lynn

[ICNDonna]

I haven't had that particular combination, but did have steroid instillations and they were actually soothing.

Donna

[eghtyslady]

Just curious....there was another post on this thread and I answered back here as well. What happened to them?

Strange.....Lynn

[Sarojini]

Oh, I think the other posts will come back -- they are working on the website and server that hosts the boards, and sometimes when they're doing that things act strangely for a while.

Anyway, welcome :welcome:

I know what you mean about flying... I had the absolute worst flight of my life right before I was diagnosed. I had to go so bad the entire time, and was up and down to the bathroom in pain, peeing tiny amounts. I thought I was dying, but later found out it was IC!

Anyway, after diagnosis I did it a few times for work, and I am about to start another travel schedule (going to conferences, etc). It IS stressful when you don't know if you will have bathroom access or not. I got the restroom access card (available through this site in the Shop & Market section), which describes IC and asks that you be allowed restroom access. It's more official and many places respond well to being shown the card, including stewardesses on planes!

I have also pulled a stewardess aside before the plane pulls out of the gate, shown her the card, and discussed my needs with her. While I always try to book an aisle seat from the beginning, this strategy has helped me switch to an aisle seat (easier bathroom access) when I did not have one to start with. It has also allowed me restroom access during the 30 minute periods before & after takeoff when you're not supposed to get up.

[eghtyslady]

Hi Jen and thanks for the welcome,

Thanks also for your story, which I just finished reading. Mine is similar to yours in that I remember going on family vacations when I was little and my Dad asking my Mom "How could she have to go AGAIN?" I have had family drs say she just has a small bladder as well.

I'm glad you mentioned about the bathroom access card as I placed an order here and that's one of the items so hope that they arrive before I leave on the 8th. I too always ask for an ailse seat however on occasion haven't gotten them. Miserable.....I end up not drinking anything and then still having to pee! Never have quite figured out how you have to pee if you don't take anything in! Oh well another of the mysteries of this condition I guess.

Thanks for your advice on the flight, really appreciate it!

Lynn