New at all this!

[LouLou]

:hi: Hi all,
I'm newly diagnosed with interstitial cystitis and new at message boarding! So, if I make a faux pas- please let me know. After pain that began two years ago and got much worse after a UTI, I was diagnosed with IC in May and received 6 bladder installations. They were no fun, but they helped put an end to bladder spasms. I am now on hydroxizil (sp) and Elavil. They help a bit too, but I still have a lot of burning (I hate that the most) and have just begun to feel the constant pressure to urinate. I am on a super strict diet-- it seems like every food irratates me and am seeing an acupuncturist(my own idea) and just had my first meeting with a physical therapist. She gave me a TENS unit and told me to wear it all day for a week, with 15 minute breaks every hour. She wants to reduce some of the pain before giving a complete examination and starting physical therapy. I've been researching like crazy and feel a bit overwhelmed, but your site had been very helpful. I do have several questions:

What type of aerobic exercises are easiest on the bladder. I can't jog or work out on the elliptical trainer. I love to bike and bought a new seat, which is very comfortable, but the vibration still bothers my bladder. What kind of exercise( other then stretching, which is helpful) do you all participate in?

I saw on one post that there is a gel that lessons urethra pain (the name may have been MSM). Is this something your doctor prescribes?

I'd like to start some alternative therapies. I have been drinking marshmallow root tea, which may or may not be helping. Any other alternative therapies that your recommend?

Thanks for keeping this website and message board. It is sooooooo helpful!

Mary Lou

[leelee88]

I wanted to say hello and :welcome: to the boards..

Ronda

[tuvaralm]

Welcome to the boards. I myself was just recently diagnosed as well, so do not really have any advice to give. But the people here on this site are great and they give really good advice:welcome:

[Roxie2007]

HI! I can give you the website for the MSM gel. It's www.jacoblab.com I've been using it for a few months now and it's helped me a lot with the urethra pain.
Welcome to this great site! There's LOTS of info here and lots of great people here with lots of advice, suggestions etc.... I hope you start to feel better soon! Roxie

[kendra&joe]

My name is Kendra and I am very glad I found this sight and talked to Griff'smommy and she refered me back to this sight for the best info.....big thanks Christine...... I have spent most of the day reading others stories, flustrations, and such. First I am suprised that so many others are going through the same things I have been going through, also a little ticked off at these doctors around here.I know that Alabama is known for being the backwards state and all I can say tonight is well maybe the rest of the U.S. is right. B'Ham is the best place for doctors here.
So this is my story, I have had bladder problems since childhood. I wet the bed til 10 or longer, finaly I trained myself to wake before hand, but have always got up more than twice a night to go potty. I was a sickly child, couldn't gain weight and itched all the time. I got pregnate with my oldest son at 17. After his birth my periods got so bad and I seemed to either be pms ing or post hurting all the time .When I got insurance had a lapo and the gyno said I had some endometreosis, sure that was the whole problem I tolerated the painful sex and the days of laying up with a 10-12 day cycle every month. My 2nd son was born when I was 27. I was teaching at the time which is my passion. When Austin was born long story short we found out he has Alagille Syndrome{a rare disorder that effectsall the major organs...liver,kidneys,pulmanary arterie, butterfly spine and alot of other complicated things, come to findout I had pasted it to him and 50 - 50 chance of passing it to my children fortunately my other 2 boys don't have it or my granddaughters have no signs of it. Back to I C , in 1998 my whole life changed around. I was deviorced from my 2 oldest sons dad , and I met someone -the love of my life everything I could ask for , with this change came new eating habbits and bubble baths, tomatoe sauce became a big paart of my diet and I see alot of ways I made I C worse, but I spent a good 3 yrs. not knowing why I hurt so much, when my 3rd son was born at age34 my IC got even worse have to say it eased up while pregnate, any way after so many surgeries and had every female organ and my appendix removed still lived with even more pain &was really in diapers with JJ my youngest was potty training because of a doc cutting all of the muscles that could control urine but went to B'ham and with little effort at all other than a bladder mesh and reconstruction of my urethra I was diagnosed in 02 but have had a hard time keeping a doctor and am sick of explaining all this to doc's that look at me like I have lost it and they don't even know what it is. Right now I'm only seeing a family doc and the man who helps keep me focused on what I can do not what I can't my shrink but he's good and understands and is going to help me with my disability .... What good could I do in a class of 25 3-4 yr olds well got that out , going on vacation next week but wanted to get this started first . Thanks for a plce to vent Kendra::smile tee

[LouLou]

Thanks so much. I've already ordered the gel! Do you all work.? If so, how did you go to work before you went into remission? I'm a teacher and am worried about how I will handle things this fall.

[GriffsMommy]

First of all I wanted to say welcome to Kendra and LouLou.:welcome:

Kendra, I'm so happy that you came to the site, I wish everybody w/ IC knew about it, I don't know what I would do w/o it.

LouLou: I work full time and I am far from remission. I honestly sit at work a lot of days with a heating pad on. My degree is in education but I do not teach, right now I have an office job where I can sit at my desk all day, thank goodness, I don't know if I could do a job where I was on my feet all day. I take all the meds that I can while I'm at work and only try to call out on the days when I'm really bad and in severe pain and feel like I can't walk. My boss is pretty understanding though which is a real life saver.

[LouLou]

Roxie,

I just received my MSM gel and am unsure of what to do with it. I assume you apply it topically. Do you only use it when you are burning, or do you use it everyday? Thanks.
Mary Lou

[Roxie2007]

HI LouLou!
I used the MSM gel 3 times during the day and at bedtime so it could work all night. I just put some on my finger and stuck it up there! lol Since it's a gel it kinda melts around where it needs to be. You might need to wear a thin pad while using it. I started feeling a difference with in 3-4 days of use. After the first month I just used it twice a day and now I just use it ever other night. I hope it works well for you!!