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OMG, YES! They finally have an IC forum! Does anyone know any new treatments for severe pain with IC and Vulvadynia??
I was diagnosed in 1999 with Interstitial Cystis and really didn't know what it meant. I went to my gyno b/c I was having pain during sex, basically anything hitting my bladder was like someone just stabbing my insides. He referred me to a uriologist and I told her my symptoms and she said right away that I definatly had IC. When I was little I serious reacurring bladder infections and I would also have bad symptoms like I had one and my mom would bering to the pediatrician and the test would come out negative. I always had problems getting my urine out and didn't know why. I remember that as a little girl. When I was a teenager I remember having bladder infections or thinking I had one and going to the gyno and getting on antibiotics and uristat. When I turned 17 is when I noticed my bladder irritating me more and more and having to buy OTC uristat. When I was in my early 20s is when I got my first bladder hydro dystenion/dialation SP under general anesthesia. I woke up and thought I was dying from the intense pain, and they kept giving me morphine and then diludid and it took over an hour to calm down. I had that done 3 times and it got worse and worse every time! My results would always turn out fine. I also has heprin, lidocaine, and dsmo treatments....nothing worked ever! I had radio frequency, nerve blocks, pain meds, bladder meds, elmiron, lyrica, nuerontin,etc. Nothing works. I am so fed up. No doctor is New Orleans knows anything! I am so alone with this. I also have Vulvadynia with the IC and IBS problems! Does anyone know anything knew??
I am 30 years old now, I'll be 31 in June. My hormone problems...PCOS has nothing to do with the IC at all. I have had IC all my life and was diagnosed at 19. I have tried every treatment and saw specialists. I have state health insurance so I don't have to pay for any treatments. IC is a neurological pain disorder. I have read artcles of women who have had help with long term anti biotics b/c most women with IC have 1 or 2 of these 2 antibiotic resistant bacterias. i do notice sometimes when i am on antibiotics it does calm down my pain sometimes. I hope they do come up with something. I want to have children one day and I am scared b/c of my IC and bladder. I have heard by doctors and IC patients that Ic goes away and into remission when your pregnant. Well their is obviosuly somethingt that is going write for the IC when your pg, they need to find out what and maybe we'll have a cure!!
I mean have you had your hormones recently recently because you dont mention how old are you.I am 42 and I have had symptoms of IC for the past 2 years!No doctors know about this condition and the best they can do is having you spending money on useless-and very often painfull treatments-that end up to you having more pain! I also have very low estrogen and very low readings in my hormones test! But the question is "does the IC cause this disorder of hormones or does the hormone disorder cause the IC"? I have spend more than 15000 euros and still am in discomfort! But the good news is that if you do find out that you have a hormone disorder of some sort, then the number one product of nature for this is maca plant!We must not look at the tree and miss the forest!Good luck!
Yes , when I was 21. I have had to be on the birth control since I was 16 because I have Polycystic Ovarian Syndrome with Insulin Resistance.
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