Living with Interstitial Cystitis

Reading these stories I have tears running down my face because I have been through so much like all of these poor people.

I went through every “rule out” test known to mankind from barium enemas to cystoscopy with hydro-distension and so many drug trials I cannot tolerate them anymore. The aftermath of the cystoscopy was massive bleeding for a week. It was a traumatic recovery for me and I am typically a fast healer and a strong person.

I am 35, was 33 at diagnosis. I have three children, now 12, 15 and 16. I have had multiple surgeries including cysts on my ovaries and fibroid tumors on my uterus causing me to have had a hysterectomy at age 30. I have had my gall bladder and appendix out as well. I take Enjuvia for the menopause symptoms which is a plant based estrogen only so is wonderful for those horrible symptoms.

The pain and debilitating frequency and urgency of urination causes me insomnia, misery and embarresment. I recently quit my full time job with good benefits and felt like I failed my family. I could not take the commute as I would have to pull over and urinate all the time and I leak urine when I sneeze or cough.

I am a graduate student and because of the insomnia, pain and frequency live in the bathroom and rarely go far from home now, and can hardly focus to write.

I take Ultram for the day and Vicodin for the night and sometimes my flares are so bad no amount of pills or bladder instillations will break the vicious cycle of pain.

I am so anxious all the time from worrying I won’t be near a bathroom and from not thinking clearly due to lack of sleep. I am considering Interstim now.

God help us all who suffer from this ball of pain and misery. Thank God for University of Michigan Urology and my wonderful urologist Dr. Oldendorf.
She has literally saved my life with her compassion and care.

I am part of a research study now and pray for a better way of life.

My constipation, diarrhea and constant misery of bathroom problems as a consequence of pills and IC is enough to ruin all aspects of my life.

I am a happy positive woman who does not sit well, but IC is making me into an insomnia and pain ridden anxious sad person. People at work and in my life do not understand the enormity of the toll IC takes on you especially emotionally and psychologically.

I feel like giving up sometimes but other days I fight it and hope for a cure. I am back to eating clean and body building but the pain always cycles in to create flares and stop my progress.

My diet is different than others as mostly orange juice, tomato sauce and lemons bother me but not chocolate or diet pop.

My misery is the constant dehydration as I cannot drink water or I have to urinate almost immediately. So I drink diet pop and something mixed in the water. I drink water at night two hours before I want to sleep to flush out my system and then I quit. Even if I am very thirsty at night I don’t drink as I will be on the toilet again.

My rituals are so complicated it makes life very difficult. I have left stores before with a full shopping cart when a flare starts. I do not travel well either and a long car ride is horrible for me.

I hope someday there will be a better way of life for those of us who suffer with this very real and miserable IC.