Interstitial Cystitis (IC) Support Group

Dear xoxolovely,
First of all welcome to this wonderful community. It sounds to me like you have vulvodynia which goes hand in hand with IC as well as IBS. I was misdiagnosed with Cystitis ( recurring urinary tract infections ) for 10 years. I took antibiotics 2 times a month, no relief really and always had the yeast infection follow. I thought it was a yeast infection and I thought it was Cystitits. My docs were wrong and I suffered for 10 years with the wrong diagnosis. I cannot take antibiotics any longer, as I am immune to most of them after taking them for so many years. I had a cystoscopy under distention done by a Urologist in 2004 and it came back positive for IC. I have the glomerulations (sp) , which is pin point hemorrhaging of the bladder wall. Not all IC patients have these so it is not a necessary thing to have if you have IC. I too had severe burning of the bladder, urethra, spasms , pelvic floor dysfunction, and finally went to an OB/GYN for the problem I was having that I thought was yeast infections, as the pain on intercourse and pain and itching were still present after they took me off of the antibiotics. I was diagnosed with Vulvodynia, it is a painful condition, and there is a diet you can use that is low in Oxylates that does help. For me the biggest trigger food for this condition is celery. I have celery , even in a mac salad, and flare in the Vulvar region for a week. Despise celery now as it has such a strong negative effect on me. If you are having burning on urination, burning in bladder, urgency, frequency, aching in the pelvic girdle, frequent urination but not a lot comes out, feel like your bladder doesn't empty completely, and are in pain, make sure before anyone gives you antibiotics again, that they culture out your urine sample for a UTI. It probably isn't one, from what I am hearing but more likely a case of IC. While you cannot get a cystoscopy under distention while pregnant, too painful and need anesthesia, you can be tested for vulvodynia, they use a cotton swab and go gently around the inner labial area, or vulvar area and diagnose that way. Since you are already seeing a OB/GYN for your pregnancy, then you can just have your doc do this simple test. There isn't a cure for vulvodynia, but I you can control the symptoms to some degree by following the low oxylate diet. I too was pregnant when I developed both conditions and IBS as well, so it could be related somehow. I hope that this info helps you, I would hate to see you go through a misdiagnoses for 10 years like I did and take antibiotic after antibiotic and get the ensuing yeast infections. cold compresses help, and also make sure that you are wearing cotton undies, that you use a fragrance free laundry detergent, mild mild soap for cleansing. I have been told that baths are not recommended for this condition unless it is with baking soda added and never bubble bath or anything that has chemicals that will irritate vulvodynia. I hope this helps you and if you have any other questions don't hesitate to send me a message. I am on year 16 with these problems and have been through every drug, test, etc, that you can possibly imagine. I don't wish the same for anyone. I am not a doctor or in the medical field at all so this is just based on my personal experiences, and my research on these topics. My best wishes to you and your new hubby and that wonderful baby on the way.
Big Smiles,
Daybyday12

IC has companions............

This lovely disease comes with a mixture of complicated issues called vulvar dysesthesia, vulvar vestibulitis syndrome, and pelvic floor dysfunction.

Panic sets in! We rush to the doctor and then another and another!

We can't believe this is happening to us.

We get online and frantically research! Elmiron, baking soda, diets, supplements, physical therapy, DMSO .......................

nothing is working, and we freak out a little more building more tension....

The 3 D's are upon us, some days we are disgusted, some days we are depressed and other days we are in complete denial and we push through with the pain .
Find the combination that works for you!

And by no means am I telling anyone to stop seeing their doctor or taking their meds., that is between you and your doctor.

I am not telling you what to do or how to do it.............I am giving you my story, sharing a free gift of how I heal, take from it what you want........use what you want , discard what you don't......................

I can tell you this, I had 4 years of control over my pain and this year I suffered a trauma that triggered my IC so, once again I am in the healing process.

I didn't say you could cure it but you can manage the disease if you do the work.

The choice is yours!