My diagnosis

[klzigler]

My name is KayLee and I have been sick since 2007. I am 21 years old and have Interstitial Cystitis. In 2007 I had Mono then in Jan. 2008 I was hospitalized for pain in my spleen. Six months later back to hospital my spleen was back to normal and still abdominal pain. Then in 2009 I seen a Hematologist thinking it was my spleen still causing the pain. In December of 2009 I started having Pelvic floor spasms all the time. In Feb 2010 I had a laparoscope and discovered I had Endometriosis they removed the spots and put me on Lupron. After surgery I had to pee constantly and still had severe pains. The doctors diagnosed me last month with Interstitial Cystitis. I have the pain, frequent urination, urgency, and flares of intense pain. I can't find a doctor in my area that has treated IC before so the doctors aren't sure what medicine to give me or how to treat me. I also have IBS so they won't give me Narcotics for pain so they gave me Toradol, and now since seeing a urologist and being put on amitrptline they took away the Toradol and have nothing to treat the pain... My best friends are the heating pad and hot baths and my biggest fear is walking out my front door. It terrifies me to leave the house not knowing where the nearest restroom will be and if I have time to get there.....

[PrairieJenn]

Hey Kaylee, Its horrible at your age you are having to go thru all this, but i can relate. im 26 now.. had symptoms since my early 20's.. and was diagnosed at 24, and as of yet we have not found a treatment that i am responding to. My only advice can really be (as hard as it is and yes its hard) dont let IC turn you into a hermit. I spent over a year literally not going anywhere but to the doctors when i had to. My urges would come every 5 minutes.. 15 minutes on a good day. i got so depressed, and missed being around people so much. Now that i took contol back I swear, i could now tell you of every single bathroom in my city and which ones to avoid lol. It helps (or helped me) to have a plan in mind of where u are heading to.. if i knew there was a bathroom stop up around the next block, i could calm myself and not let the anxiety take over about thinking IM NOT GONNA MAKE IT. Also i got a "portable jane" (a female adapter on a travel john) so if things were really bad i had a backup plan handy.
Iv now started back at work, working 4 hour shifts, and i am open about my IC. My co-workers know if im not visible to leave me be ill be back in 5.

You mentioned that you dont have many doctors with IC experience where u are. And i wish you the best of luck with that. there is a grand total of 5 urologists in my city and iv seen em all.. and even traveled out of the province to get a second opinion. Dont stop looking for someone who can help you.
Wishing you all the best:smile tee

[shawnster]

Make sure you grab a copy of the Interstitial Cystitis Survival Guide by Dr. Moldwin. You could glean most of the info from the forums, but trolling through all the posts takes a long time. I got his book and read it in a couple of hours. It really helped me understand where the medical profession is in terms of possible treatment plans, etc.

I personally am not too keen on taking drugs. I feel like a walking pharmacy some days. So I've been trying to look around for other things that might help.

The urgency thing is the kicker. I find that I can control the burning with baking soda and water or over the counter AVO. I'm also trying to use the mind over matter thing when it comes to frequency and make myself hold out just that bit longer so that "have to pee" all the time feeling doesn't come back.

But the urgency is definitely a pain. I'm going to try pelvic floor therapy, massage, and reflexology and see if it helps with some of that. Acupuncture didn't really work well for me and I don't do well with needles. Some people have tried Flomax and Lyrica. I haven't gotten that far with meds yet.

I've often wondered about herbal remedies, but haven't had the time to research it yet.

Others may have more insight.