Interstitial Cystitis

[livingwith]

Our story begins back in 2000, my husbands Grandmother had just died from luekemia [leukemia] in April and in May all of a sudden my husband started having pain in his back and numbing of his legs, along with spasms everywhere. We started out with our family physician and he sent us to a Urologist My husband was diagnosed with prostatis [prostatitis]. He took Levaquin for it, but it never helped. In the mean time I got pregnant with our second child, so what should have been a joyous time ...Read the full article

[jpb]

what medications seemed to help your husband? Do you remember if any urinary tract infection triggered his symptoms?

[jasonswife]

as i read your story as a wife with a husband with ic tears ran down my cheek and my heart was pounding because right now i am going through the exact thing with my husband.slowly watching my superman lose his cryptinight.he has had symptoms for two years now and they have been treating symptoms with leviquin and pain meds and stating possible prostitis but never confirmed.he had cysto in urologist office in jan 08 that could not be comlpleted because he started bleeding massively for 4 days blood was shooting out of his penis and now he is in worse pain and all the bladder issues,fatigue,depressed,hopeless he was trying to work and just in april they fired him while on ittermeditae fmla and he is going to appeal this.we are at our wits end and losing everything .we have four children he is only 47 yearsold healthly his entire life.we have cysto in the or coming up soon but the doctor has suspected prostate cancer.recently i went searching on my own and found ic and all that comes with it i could say more but pray that they will listen to my voice and do the currect testing during this next cysto...we have a grandbaby coming in october and want to be ready i cant wait years of this watching my hero die...your story was amazing thank you.anyone with suggestions on how to push this issue with doctors please feel free to comment.
sincerley,jasonswife va

[jbw]

Hello,

My name is Jason and I've been battling the same thing as your husband. It has been almost 2 years for me as well. I've had every test done and all came back negative. My cysto was done in the office and looked normal. However, I go to the bathroom about 25 times a day. I've been so depressed and my wife and family has been through hell. Finally, I had urodynamics done and it revealed small bladder capacity. This is what i've been trying to tell my family and my doctors for the past 15 months. I was diagnosed with prostatitis but I knew this was not the case. All my symtoms suggested IC. After searching for a doctor to listen to me, I finally found one after the urodynamic test and I am now being treated for interstitial cystitis. I am on elmiron, amitryptiline, and hydroxzine. So far the symtoms have not improved much, but the doctor says they will over time. I just wanted to tell you that you're not alone. There are many men out there with these symptoms. Hope this helps and write back if you need more info. Jason

[jasonswife]

Hi thanks for replying back as i read your story it felt so real. we had to go to er today my jason is in severe pain with his bladder he wont even drink just so he wont urinate,his groin and whats weird is his testicles are having spasms bad they are moving up and down for the past two days and its never done that.im so scared the urologist is gonna miss something we have appt next week for cysto in the or but he told me not with the hydrodestention and he stated that he may be able to detect ic if no other findings but he wouldnt really focus on ic!!!!my husband is so depressed percocet wont help at all he hates pain meds!!he also has pain in the left thigh area and cant barley walk..all of his ua test came back normal but has all uti symtoms for two years i dont understand why the doctors dont talk about ic and im so afraid anymore.i cant belive all the suffering ive heard since ive found ic patients.i really suspect he has ic not prostate cancer or prostis he does have a nodule on prostate they are going to do biopsy of bladder and prostate i hope it doesnt cause anymore suffering because hes almost giving up!!! but jason thank you because as he listens to your testimony it lifted him up and tears fell down his cheek!! god bless you and your wife and children!!
sincerley,
jasonswife,va