Diagnosis in 2 weeks

[april ryan]

Here is my first post!

I've been reading your messages, and first of all I hug you all. It's not fun having IC and it is psycologically a real challenge.


I am italian and I live and work in UK.
I have been having cystitis and frequency from many years; last April I started to have non-batteric cystitis that didn't go away. It was really painful and I got really frustrated when the NHS doctor (public) told me that it was "post infective inflammation" or maybe I just was too stressed. She also asked me to take nurofen, that actually gave me one of the worst flares ever with temperature at 38!!

Finaly I got my private healthcare from work and I went to see a specialist. After the visit he told me it is pretty clear that I suffer of IC.

Obviously, I didn't take really well the news - I cried all night long - in fact, I managed to cry WHILE i was sleeping :/
Now I feel a little more positive and I am happy to have found a group with my same problem.

THE WORST WAS BEING ILL AND DON'T KNOW WHY!!

The doctor seems quite good (I hope) and prepared also in IBS relation (also something I have). He said I shouldn't worry, that we will do good treatments.

I have a cystoscopy with bladder distention in 2 weeks and then probably 8 treatments with sodium hyaluronate, injected from the vagina (intrawall). I found an articule on that in ICN website as well.
I think in USA it is not been approved yet, but if anybody knows something about that it will be really appreciated.
Anybody got the injections from the vagina before? That really scares me.

Some reference of this treatment:

http://www.cobfoundation.org/IC/ICIntravesicalCystistat.html
http://www.cystistat.com/en/index.html

Thanks all, and I wish you the best. :hi:

April
xx

[kadi]

Hi April,
Welcome to the ICN! I'm sorry you likely have IC, but am glad you found your way here.

If you've not tried the diet yet, it's one of the most effective treatments for reducing IC symptoms & no side effects like many medications! Here is a link to an overview of the IC diet.
http://www.ic-network.com/diet/

And here is a comprehensive food list. http://www.ic-network.com/diet/dietcheatsheet.html
I found that eating out of the "usually ok" column for several weeks reduced my symptoms quite a bit. Though I still need medicines, the diet is my number 1 treatment. Without it, my medicines aren't worth much! I found the easiest thing to do was to print out the diet & tape it to the refrigerator. I ate only "usually ok" foods for about 3 weeks, then tried the "sometimes ok" foods one at a time (several days apart), marking them with "ok" if my symptoms stayed the same, crossing them off if my symptoms got worse. Eventually I had my own custom diet that really helps me.

Ask lots of questions! Learn as much as you can. There is life with IC! When I first got IC, I was very very sick, voiding 60x a day, completely unable to sleep, eat, function at all really. Over time, finding my diet triggers & working out a treatment plan with my doctors, I've gotten to a point where I work full time most days easily, wear jeans, exercise, attend church, go out with friends, and have a pretty "normal" life overall.
I'm telling you this so you will know it is possible to be very very sick & have a good life again.

Sending a hug, wishing you better days soon,

[kadi]

PS. There are cookbooks available for the IC diet. There is a free one on this site.
http://www.ic-network.com/icchef/

There is also a recipe book in England, "Recipe Book for I.C. Interstitial Cystitis" by E. Murphy. I ordered it on amazon.com

Here in the US, there are 2 books on diet with recipes:
"A taste of the good life" & "Confident Choices" They are both available in the ICN shop linked at the top of the page. Or amazon might have them if that's easier when you're ordering from overseas.

:)

[Renee11]

Hi april ryan :hi:

I am sorry that you have IC, but you have definitely come to the right place. This site is wonderful and full of information. I'm newly diagnosed with IC (7/29/08) and this site has helped me tremendously. I really appreciate all the info here and I'm sure you will, too! I hope you feel better soon! :angel:

[april ryan]

Thank you so much! you are all so kind! :)

I will definitely buy the recipe book, maybe together with the "survival guide" which seems to be pretty famous.

The diet really works. I actually started it for IBS, but I had great improvements for my cystitis as well.

Thanks again,

hugs:hi: