a new italian friend!

[VeronicaItaly]

HI,
First of all I bid you to forgive my bag English! I'm Veronica, 20 years old and I live in Italy, between Venice and Verone. Unfortunatly since two years Ci has ruined my life. I was an happy and paretty girl, I loved life, I liked studying,doing sport,going out with friends! I wanted to become a surger and I had a lot of dreams to realize. But above all I had hope in the future.
You know, Here in Italy Few doctors know our pathology!
CI is more or less unknow. During the first six months of pain , doctors treated me as I Were mad,crazy. They said me:"you must be calm!Take it easy, Your not ill. Have you gor problems with your Boyfriend??"
And they filled me with antibiotic and sedatives.My world was collapsing upon me.
My bladder hurted all day long so I lived all the day in the bathroom.
I couldn't belive that I was not ill!So I started my reserches on the web and after some day I found a web site that spoke on our pathology. I contacted a doctor who was specialized in the treatement of Ic and I had the diagnosis.
I tried eparine, ialuronic acide, Fibrase(elmiron) , iyperbaric treatement,exercises to re-educate the pelvic flore, but none of these treatements gave me relief.
So I decided to write you to have a piece of advice. What can I do now?
Please, help me!:pray:
I thank you!
Veronica

[sandramac]

:welcome: Hi Vernica, welcome im glad you found this site! have you gone into the IC patient handbook and seen the IC Diet and info there? the people here are amazing and very supportive and have loads of info! I thank Jill and all the IC people who run this site! I ve meet many good friends who are alwys there and KNOW how you feel! On the ICN you will never be alone with this disease. I dont have any suggestions except for the hand book and diet! have you tried any installs? hope you feel well soon! Hugs Sandra:cat: :cat: :cat:

[KarenIC]

Welcome Veronica!

I'm Italian also. My father was born in Italy and I have been to Venice many times. I love it very much. I was there this past June for 3 weeks with my family.

There are many wonderful people here on the message boards who can give you very informative advice on this disease. I'll try to help you with all of my knowledge about IC. I've had IC for the past 17 years and have also tried many different treatments. Regarding Elmiron, how long did you take it for? This drug takes many months before you might see any improvement. Besides oral medication, there are also instillations with heparin or elmiron which may help. Physical therapy to treat the tight pelvic floor muscles can be very helpful.

Please know that IC is a physical disease of the bladder lining and it's absolutely not "all in your head" and don't let anyone or any physician tell you differently.

If I can be of any other help, please feel free to write to my any time. You can also send me a private message.

State bene,
Caio,
Karen

[vm]

:welcome: So glad you found us and hope this site is as helpful to you as its been to so many of us.

Here's a link to the handbook in case you've not had a chance to look through it yet:

www.ic-network.com/handbook

It is FULL of great information about IC, its treatment, and lots of self-help tips.

Hope to see you around. :)

[Judy777]

Ciao Veronica!

I am not Italian, but I have traveled to Sicily. You live in a beautiful country!

I'm so sorry that you are feeling so bad. Have you been watching the foods that you are eating? The IC diet has made a big difference for me. You can read more about the diet here http://www.ic-network.com/handbook/diet.html#topfive

I am on Elmiron, but it is not working that well for me. I started getting bladder instillations this April. I have been getting them done once a week and I think this has really started to help me. I am getting the Heparin installments. You can read more about the instills here http://www.ic-network.com/handbook/rescueinstillations.html

Also I have been taking Antihistamines and this has helped with my pain.
http://www.ic-network.com/handbook/oral.html

I hope some of this information will be helpful to you. Each person is different in what medications and treatments help them. I hope you can find a good combination of treatments that will help you.

Take care, Judy

[asn]

Ciao Veronica!!!
Io no sono Italiana (ho passaporto, ma non habito in Italia), ma ho imparato l'italiano 15 anni fa in Firenze.
Io non sono sicura si ho IC, ma sempro ho urgencia e devo andara al bagno almeni 10 -18 volte al giorno. Ma non ho dolore!!!
Il mio dotore me ha detto che io ho una "bladder" (non sonno como si dice) hiperactiva, e che il mio problema non e simplice.
La mia "ae) e' 35 anni.
Si fose te, Io cercaba per una associazione medica in Italia, e escribire a tutti I medici urology quale e l'tuo problemi, che medicamenti hai probatto (non so como si dice, "wich treatments you have tried") e sono sicura che almeni un dottre ti puo aiutare,.
Io non ho un buon dottere in il mio paise, io debo fare un viaggio agli stati uniti per vederlo. Ma non mi importa, lui e fatto tutti he finalmente ho il megliore trattamento per me.
scribimi!!!!

[BeachBaby]

This makes me miss my dear in-laws and especially Ma, who regaled us with her annual trips to Italy and the many months she spent with cousins there. I have yet to get there.:tsk:

I was wondering if you have read Dr Moldwin's book (The Interstitial Cystitis Survival Guide' by Robert Moldwin, MD (2000)...if you can read english well enough, it just might give you all the basics you need to have better discussions with your Drs in Italy.

The book is on the site here for purchase as well as it is through most bookseller sites. Maybe it's in Italian, never thought of that. I am going to look for a link for you. http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=Books-ICandOAB.html

Good luck, it can be a difficult disease, especially in the beginning. :)

[VeronicaItaly]

Dear Friend,
i thank You for your Kindness!
I started taking Elmiron two months ago, but I had no results.
I follow strictly the diet: I don't eat tomotow, drugs, alchol, and acid food.
I Made 12 ialuronic acid and condroitine instillation. I made 12 Epharin instillations. I Made 32 iperbaric rooms. But non of them give me results. A PhYsioterapist helps me. I can't have sexual relations.......
What about sexuality? Can you give a piece of advice?'
thank you!!!!!!!!

[ICLori]

Hi, Veronica, welcome!

Sometimes it takes a very long time for the Elmiron to start working - for some people, it can take six months or even longer! So I am hoping that it will start working for you soon, maybe in another month or two.

When we have tried all the drugs there are to try for IC, sometimes we have to turn to medicine to help stop the pain. Medicines like narcotics (morphine, etc.) I find that Ultram helps me a great deal, I'm not sure what Ultram would be called in Italian. But it sounds like it is time for you to look at medicines that will help with the pain.

I was wondering, have you tried Elavil yet? It is an old tricyclic antidepressant that they found helps with pain, when given in low doses. Many people (over 60%) find great relief with Elavil, and it's not a narcotic so doctors aren't afraid to prescribe it to patients.

Blessings, and welcome,
Lori