Confused

[Living94]

Hi- I am 29 and just trying to figure out what is going on with me. I have not felt well since high school. At that point, I did not have any bladder issues. I got Mono my Senior year and haven't been the same since. I was diagnosed with chronic fatigue, IBS, but no doctor/homeopath, etc. has been able to get a handle on what is really going on. For the last year or so, I have started having bladder discomfort, pressure, frequency and sometimes my urethra hurts. My gynecologist says that I definitely have IC. It kills me because I am newly engaged to a wonderful man and the thought of sex at many times is just unbearable. I am tired, confused and uncomfortable. I took Elmiron for about six months but my hair started coming out, so I stopped. I cannot tell what foods trigger me. I can eat yogurt, but can't drink milk. I was tested and showed that I am definitely allergic to corn. I am young and want to be vibrant, and find that all I am is tired and frustrated beyond belief! I find that many times, I am even too tired to exercise! What can I do to help my sex life along and feel better? My fiance is very understanding, but how long should he have to deal with this?

Thanks for your understanding.

[ICNDonna]

First of all, I'd like to say :welcome: to the IC Network. Have you found the Patient Handbook? (There's a link at the top of this page) The IC diet can be a challenge, but I do think it's a good idea for anyone with IC.

Corn is an extremely difficult allergy to have to deal with --- it's in so many foods. You have to read labels extremely carefully to be sure you don't eat any.

Was the elmiron helping? If so, you might want to go back on it. Sometimes the hair loss (which is rare) doesn't continue.

Sending warm healing thoughts,
Donna

[hoping4acure]

want to add my :welcome:

I hope you find out what is going on. If you do have IC...you found a wonderful site. Everyone here has great advise and is VERY supportive.

Good luck and let us know what is going on.

:grouphug:


Lou

[tigger_gal]

Hi Welcome to the icn, You will find a wealth of info withing these pages. Donna gave you great advice:)

[Living94]

Thank you for your kind words. I am pretty sure that IC is what I have. I will try and work on my diet...I am hesitant now to go back on the Elmiron because of the hair issue, but if nothing else works, I might try it again. I just want to feel better!

[hoping4acure]

I was on Elmiron for almost 2 years and I did have some hair loss, but nothing noticable...my hairdresser (who I go see every 4 weeks) didn't say anything. If the elmiron is bothering your stomach, try taking it out of the capsule and putting it in some water and drinking it. The manufacture of Elmiron is aware that it is the capsule that upsets our stomach's (not so much the medication) and I hear they are working on the problem. :loco:

Good luck and keep reading...educate yourself as much as you can.

:grouphug:

[SandyRN]

:welcome: to the board. You've come to a wonderful place....lots of helpful, and understanding people here.

Do read the handbook, check out the diet information, and most of all, ask questions here...and do lots of reading. You can use the search option if you think of something you'd like some answers on as well.

I'm wondering if you've had a cystoscopy w/ hydrodistention for a confirmed diagnosis? There are lots of meds and treatments out there besides the Elmiron that have helped many of us. You can see my laundry list of diagnoses and medications below.

I hope things start falling into place for you soon.

Sandy

[KathiB]

I had a major flare up last summer, then I was able to get it under control through diet alone. Now I'm having pretty bad symptoms again, but I know it was because I ate chocolate & spaghetti with tomato sauce over the holidays, so it's my own darn fault. I only mention this to say how important diet is. If you can't figure out which foods are triggers for you, keep trying!!! For months I felt great using only diet to control my symptoms.