“I have had constant urgency of urination for 8 ½ months now. …I have been to 7 urologists. I have had electric cauterization surgery….10 dilations – 2 Kollman …where they stretch you really big under anesthetic…. 3 silver nitrate treatments….a useless hysterectomy….(I was worse after every one of these)….I have been butchered….I have been in a mental hospital because I wanted to take my life. But I have 2 small children, 3 & 5 years, who need me and a loving husband, although this illness has put much strain on our marriage. I guess I have been damaged permanently….I have symptoms in my vagina, my right groin and right lower back….I have been cystoscoped 7 times, and all they come up with is Urethro-Trigonitis. I have constant urgency, no breaks. I am really in a living hell.”

*****************************************

“After suffering for many years and being given sulphur drugs, i.e. gantricin, bactrim, I received only temporary relief. ….(Following these antibiotics) I had long term (2 months) low-dosage tetracycline four times a day. That was 3 months ago, and the sense of urgency is beginning to return.”

*****************************************

“I am 20 years old and …am suffering from Urethral Trigonitis, inflammation in the base of and neck of the bladder. For 8 months now I haven’t been able to get rid of it, no relief. The Mayo Clinic did dilation and a 5 day silver nitrate treatment on me, it didn’t help and it was as horrible as Kay Z. described….In September the whole ordeal started. I started out with tonsilitus and took penicillin to get rid of it and every time in the past this …made my bladder act up but a sulfa drug would cure it….In October the pain got so bad I went to a urologist in Minneapolis and he scoped me and found several inflammatory polyps. He suggested cauterizing them…. One month after this the pressure and pain didn’t go away …The doctor scoped me again to see what was going on and thought my uterus was my problem, so to a gynecologist I was sent. The gynecologist thought I had Endometriosis, but during surgery he said he found my uterus poking into my bladder. They removed my uterus and ….this whole time I have had the bladder inflammation. No one can get rid of it. “

******************************************

“ I was diagnosed as having interstitial cystitis and a hypersensitive bladder…meaning that the urethra and bladder base are inflamed. I have had numerous dilations….I was a happy, healthy girl of 21….(In) my second month of pregnancy things went down hill. I’ve had bladder/urethra problems for 14 months now….”

******************************************

“…I too am suffering with cystitis. I am writing this letter at 5:00 in the morning because this is one of those endless sleepless nights of depression where the pain and worry will not let me relax….I have suffered (with cystitis) for 3 years now and wonder if I will ever be normal again…I’ve just undergone a cystoscopy and a biopsy and other than an inflamed area of my bladder the doctor did not find an infection. Urinalysis tests and cultures do not show any bacteria. Like you I have intestinal trouble … and my problem may stem from diet and medications I have taken. The past month I’ve taken at least 10 different drugs, which have not helped. I realize also that stress may be a factor….However, when I have cystitis I’m more nervous than ever. I’ve gone from one doctor to another…gynecologists, urologists, internists, all saying various things.They don’t want to listen. I’ve often thought …I need a god…who’ll come up with the perfect solution. But now I realize that god is me…I must …pursue this and…take matters into my own hands….I am making an appointment with an allergist, and possibly a therapist. I do need to talk with someone who will listen and help…

******************************************

“…after countless specialists, I found a preventive medicine doctor who diagnosed food allergy….however treatment is difficult.”