- CASE FILE
Daughter diag w interstitial Cystitis at 4...Shes now 23. 21 years of excrutiating bladder pain --no lining, and offset symptoms. No cure.
ABOUT THIS CASE FILE
My daughter was diagnosed with ICS when she was 4....she is now 23. Her pain is excrutiating and she has such a poor quality of life. She has been to so many drs thru the years, at so many hospitals, has had so many procedures and tests, has been thru so many treatments, was part of a research group, and has taken so many medications and vitamins, etc..... When she was young and going thru this, every dr and specialist we went to would send us to psychiatrists, psychiatrists would send us back to yet another specialist. We had to get an IEP for school. She went 1/2 days, but after lunch every day she had to come home.....so sick and in pain. The next year she had a district tutor as she couldnt attend school at all. Even up to that point, we found out she had been bullied by students and teachers for the amount of time she spent in the bathroom. At home she would do her homework in the bathroom, eat in the bathroom......her life was spent in the bathroom. Before her diagnosis at 4 I kept doing research and knew that ICS was a literal description of everything she had been going thru. We started back at square one.....going back to every dr and specialist again only to be told that children dont get ICS....no one believed that she could have it at her age. I finally found a specialist in ICS in KC.....who only took patients over 18. I called his office daily, relentlessly begging until he agreed to see her. Our first appnt we were again told that children cant have ICS.....I was prepared this time and pointed him to websites that were dedicated to the children who have it. That at that time there were over 100 children in the US that had been officially diagnosed with it. Although he expected not fo find anything, he agreed to do a hydro-distension at her next appnt. After the procedure he came out w a picture of a normal bladder(a white ball) and her bladder (a solid bloody red ball). He told me I was right that she definitely had ICS. We finally had an answer and hope for the first time since she became ill. We were then told at our next appnt that there wasnt a cure and that the only drug for the disease at the time, Elmiron, could not be given to pediatric patients. During this time the other symptoms of ICS were only getting worse, including the side symptoms of severe IBS, chronic migraines, and joint pain. She had already been on every diet, probiotic therapy, vitamin c therapy.....she had times where she would sit in the bathroom for up to 8 hours and then cry when she tried to stand. She would scream uncontdollably when we tried to get her to leave the house for anything.....movies, the fair, a carnival.....things that other children her age loved to do. Kids would play outside in our yard or come in and play with her toys as she laid on the couch or went to bed. We have lived this life for 19 years now. I just want her to be able to function and live a normal life.....without pain, without constant fear of being by a bathroom. She started Elmiron--no results, she had instillations that thru her in to the worse pain and flare up shes ever had as well as the added pain of Vulvadinas. she's taking raw aloe vera capsules, prelief, D-Mannose, Quercetin, duloxetine, Hyoscyamine, Doxepin, and Solifenacin now.....with the Elmiron. She left the house tonight for just the 2nd time in months to go to a destination 18 miles away. I know she will stop at least 3 times between here and there as she always does to use the bathroom and she will not eat or drink til she gets home. This is her life at 23. She says she would never take her life but she has also said that she is ready to die when the time comes. We at least found a Facebook group , so she knows that she is not alone. There are millions of sufferers. This also as you said only makes anything female more excrutiating. She is bed ridden when she has a period and nothing seems to help her pain. We were also told when she was young that if and when she was ready to have intercourse the pain would be unbearable. Awareness is the key....funding, continued research, and drs who will listen and believe their patients that is the key. I want to see her happy, living her best life before I die. I am pleading with Chasing the Cure to please help us find answers.