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Jimmy Royce
04-28-2004, 10:34 AM
Hey everyone, my name is Jimmy and I currently live in San Francisco. I am 26 years old and I was diagnosed with Interstitial Cystitis 4 years ago.

I was a little surprised that I actually had it. I came to the Urologist for a completely separate reason that had nothing to do with frequent urination. In fact, strangely enough, I thought that it was normal. The steady increase was so slight that it didn't really occur to me that there was anything wrong.

After a bladder distentation (they had to dilate my ureathra and boy was that not pleasant!) Dr. Foote at Midtown Urology, we discovered that I indeed had Interstitial Cystitis.

At the time I didn't think it was a big deal. She gave me hydroxyzine and sent me on my way. I recovered from the distentation, and shortly after that I moved away from Atlanta to Philadelphia, and then eventually to San Francisco.

I didn't have any problems, and I didn't even know that there was anything wrong. It was until one night in June 2002, that I had my first flare up. I became manic, and started to really get upset because the pain wouldn't go. A day later, it was gone.

Then a year later in August of 2003, it happened again, this time the flare up didn't go away, and I decided to use my medical insurance to use. I called urologist after urologist and none of them specialized, let alone knew about interstitial cystitis. When I did find a doctor, he was extremely skeptical of my condition, and didn't really do anything but sit a medication book down and made me read about Elmiron and wrote me a prescription and sent me on my way.

Needless to say, for an 'expert', I wasn't too ethusiastic about his lack of compassion, or his attitude. For pain, I was referred back to my PCP, who refused to give me the amount of pain medication that I would need in case of a flare up (because he knew nothing about IC was his excuse). The Urologist refused as well, and even after being sent to a pain clinic (who could only refer rather than prescribe), both physicians still were reluctant to give me anything.

So now, after Elmiron's side effects were a little too intense for me, and the IC flare ups are constant if not everyday, I'm looking at other options in the San Francisco bay area for good doctors, still bearing IC without pain medication, and folloring diets among trying to remain calm.

I have hope, that is sometimes the best weapon against IC, and believing in yourself is the best medication. In times of severe doubt that things will get better, I just have to know that there are other options just around the corner waiting to happen.

(I apologize for the long post, I was trying to make a cliff notes version, but it seems that I ranted a wee bit)

Jimmy Royce

(BTW: Does anyone know of any good doctors out there in the Bay Area?)

sleepyangel30
04-28-2004, 10:39 AM
it's true, believing in yourself is the best medication:angel:

Sarojini
04-28-2004, 10:40 AM
Hi Jimmy, and :welcome: to the ICN...

I don't know anything about dr's in the Bay Area, but I just wanted to welcome you... you've found a great place; tons of support here!!

I hope you find the info you need.

:)

Dani72
04-28-2004, 10:48 AM
Welcome,
Sometimes it takes some time and research to find a good doctor. Hopefully someone will know of one in your area.
God Bless,
Danielle

fireflicker285
04-28-2004, 11:27 AM
I live in Canada so don't know of any doctors your way, but wanted to wish you luck in your search.

I found I had stomach pain and gas and headache from the Elmiron at first, for the first month or two and then they disapeared and now I tolerate it well.....Still waiting for it to "kick in" though. It can take a good 6 months or longer apparantly.

Wishing you well whatever you do.....:hi:

SharonA
04-28-2004, 11:47 AM
:hi: Jimmy and :welcome:

You have found a wonderful place full of caring and supportive people who understand what you are feeling and going through. I hope you find the right doctor who will work with you and that you will find the treatments that will help. Take a look here on ICN to see if they have any doctors listed near you. :)

Katrina
04-28-2004, 01:20 PM
:welcome: :welcome:

I have some good resources for you:
http://www.ic-network.com/handbook/


http://www.ic-network.com/ec/findingadoctor.html part of this link seems to not be working at the moment.....maybe why no else listed it...but hopefully it can help you later.

I hope someone can help you .....Welcome and Best Wishes to you.

Feel free to contact me if I can help you anymore.

Dixiefireball
04-28-2004, 01:43 PM
sorry i don't live in your area either but i did want to welcome you to the ICN.:kiss:

kelly McC
04-28-2004, 01:52 PM
I also dont live in your area but would like to give you a big :welcome: . I hope you can find a doctor in area soon. The ICN has a list of doctors. Best wishes ,
Kelly:grouphug:

Iris
04-28-2004, 02:57 PM
:hi: and :welcome: Jimmy, sorry I also do not live in your area, but hope someone can help you out. You have certainly come to a great support group, and lots of information to help you out. Please let us know how you are doing, and if you have found a doc to help you deal with your IC. Take care and good luck with doc hunting, Iris.

curlycue
05-01-2004, 06:42 PM
Dont give up please you will find some one to help you I will be :pray: for you

Ruth

arcticfox
05-01-2004, 08:04 PM
Jimmy,

I just want to welcome you to our little group.. Hope to hear more from you.

Arcticfox:hi:

amaris
05-03-2004, 02:36 PM
Jimmy,
Welcome. Last week I couldn't get the link that Katrina gave you to work. If it's still not working try looking here: http://www.ichelp.org/AskTheDoctor/physicianregistry.html
You can get a list of physicians in your area e-mailed to you.

Sending lots of encouragement to keep your hope up.

Amaris

MAMASITA4
05-14-2004, 02:17 AM
Hi everyone! I am a wife, mother of 4, and am currently on short term disability thru my work awaiting an answer on SSDI..applied and sent forms in a week ago. Told 3 to 5 months for decision. I was diagnosed with IC in 2000. Have had diagnosis of hematuria (microscopic blood in the urine for MANY years previous to IC diagnosis) Just had hyrdo and urethral dilation end of March. Have been on ALL the meds...uro said IC was worse now than when he did hydro in 2000. He has put me on permanent disability due to the chronic pain and symptoms of the IC along with all the other health battles I have to deal with each day.

I have been trying to do as much research on IC and connection it may have w/autoimmune. Seems to be a lot of conflicting info w/opinions. To add insult to injury, I also have Hashimoto Hypothyroidism, Irritable Bowel Syndrome, inflammatory arthritis and fibromyalgia. Was put to sleep 3 times within 90 days...had precancerous polyp removed from colon, gall bladder removed (appears my body attacked the gall bladder as it previously did my thyroid), and the hydro/urethral dilation. I love my uro...been a patient since 1990 and got the pleasure of meeting him with my first round of kidney stones. Just wanted to give intro. :hi:

MAMASITA4
05-14-2004, 02:33 AM
Hi Jimmy (and everyone else who thinks I am a total moron!).

My reply to your post was my first post....I should have started a new thread...so I hope everyone will accept my apologies. However, as I stated in my post, I was diagnosed with IC in 2000. I sure hope you can find a uro in your area that you will be happy with and is knowledgable with IC. The disease is frustrating enough much less not having a uro that knows nothing about it....<<<<CALLING ALL URO'S,,,,GET W/THE PROGRAM!!!!>>>> Thank God for the good uro's out there and I will be praying that you find one soon!

sing_to_you
05-18-2004, 09:33 PM
Welcome there the you!!!
your going to love it here:kiss: :hi:
sing_to_you:thumbsup: Welcome

catwoman_22
05-21-2004, 09:32 PM
Hi Jimmy, welcome to the group. I'm sorry you are in so much pain and having problems finding a good urologist. I'm new to all this too. This site has already helped me cope with IC alot. The people here are so supportive. You are not alone, I have had some of the same problems you are having with doctors. My family doctor couldn't figure out what was wrong with me. He finally referred me to a Urologist, but the urologist didn't help me a bit. He would just check my urine for infection and send me for CT scans to see if I had kidney stones. When he didn't find anything there, he sent me back to my family doctor. Then my family doctor would send me back to him! He wasn't a pleasant person anyway, he had a very bad attitude, even toward his nurses and other staff. So I asked my family doctor to refer me to someone else, which is the Urologist I go to now. He is wonderful. He pretty much knew right away I had IC from the symptoms I had, so he scheduled a Cystoscopy/Hydrodistension on May 17th and diagnosed me with IC. The other urologist and my family doctor wouldn't give me anything for the pain either, which is so frustrating. It seems like doctors never want to prescribe pain medication, no matter how bad you are hurting. My new urologist is really good about controlling my pain though. Right now I am on Macrobid (an antibiotic to keep me from getting an infection since I just had the surgery), Levbid which is for bladder spasms, Pyridium for burning when I urinate, and Percocet for the abdominal pain. I'm sorry, I don't know of any doctors in your area, I am across the country. I would suggest the links the other people posted that list physicians in your area, the phone book, and referrals from your family doc. Don't give up, you will eventually find a good urologist that will help you with your pain. It took me awhile too, but I finally found one. Good luck!

blue
05-21-2004, 10:41 PM
Jimmy and Mamma, welcome!

Jimmy, scroll down, and see if you can find a thread that is in your region or area. I'm sure you will find someone else, and maybe they can recommend a uro.

blue
05-21-2004, 10:42 PM
http://www.ic-network.com/forum/forumdisplay.php?forumid=94

Try here.

blue
05-21-2004, 10:48 PM
SAN FRANCISCO
Marshall Stoller, MD, Urologist, UCSF Medical Center, 400 Parnassus, #610, San Francisco, CA (415)476-6433.
Research Area: Stoller Afferent Nerve Stimulator (SANS) - Review his ICN Meet the Expert Chat Transcript

Jerome Weiss, MD, Urologist, 199 Bush St., Suite 650, San Francisco, CA 94109 (415)441-5800
Interests: Pelvic Floor Dysfunction Review his ICN Meet the Expert Chat Transcript

http://www.ic-network.com/md/doctorlistings.html#CA