Thread: my story
11-03-2002, 10:21 PM #1
Hello everyone, Im a 21 year old male from South Carolina. I guess most of you know only 10% of Ic patients are men. Anyway Ive been sick now for 7 months. I was first told I had chronic prostatitis. I took a round of doxycycline with no effects. So then I seen another doctor. He also told me I had prostatitis. He put me on cipro. The cipro helped me some. However I was know where close to being well. So I then decided to go to a third doctor. After a few very painful tests, he informed I had Ic. He put me on elmiron. Ive now been on it about 2 months. Im also on some other medicine. I forget the name. Apparently it works in conjuction with the elmiron. This doctor told me it would take 3-6 months to see any results. Ive been on it for about 2 months now. Ive yet to see any results. Im not totally convinced I have ic. I do not have alot of the symptoms. Mainly I do not eurinate that often. I mean no more than a usual person. However I do sometimes have trouble starting. I also sometimes feel like I dont get completly empty. I can also sleep through the night. That is unless Im in pain. Its never due to urgency to eurinate. Anyway Im trying to stay positive and hope for the best. I believe in miracles. Ive read a few of the other posts. I hope to read more as time goes by. Ive seen many differant descriptions of everyones respective pain. Ive had differant pain through out the last few months. It started as a mild pain in my rectum. That lasted for about a week. I thought it was not that big of deal. Then the pain moved to my pubic bone. I started getting a bit worried at that point. So thats when I first went to the doctor. Then after about 2 weeks it went to my male organ. It was just a chronic pain in my urethra. Ive never in my life felt pain so intense. Within the first 4 months I also had some pain in the testicles. For the last few months Ive only had pain in my urethra. That is ever since the doctor told me I had ic. I can barely drive at all. I only go out if I have to. I cant sit anywhere unless its heavily padded. Im basically confined to my room. I used to travel on a frequent basis. I really miss that. I also miss hanging out with friends. I feel totally alone now. My mom expects me to be 100% positive. Its like she thinks I will just get well. I hope I can but I dont know. I wanted to have a great career and marriage. However if I do not get well, I know I cant get married. This has effected me sexually as well. It has also effected me mentally. I have to fight dejection every day. Anyway Im glad I found this board. I would love to chat or exchange emails with anyone. It will be nice to talk with someone who can relate. After all our families do not know how we feel. So thanks for reading everyone. Any responses are appreciated. I hope to make friends with everyone.In God I trust.
11-03-2002, 11:53 PM #2
Welcome to the IC Network. You'll find a lot of information and support here. I do suggest you read the information in the Patient Handbook (you'll find it on the pull-down menu at the top of this page). If you're not on the IC diet, that's a good starting place --- some people find a great deal of relief just from that one step.
Were you diagnosed by hydrodistention in a hospital?
Elmiron does take up to six months or more to have any effect at all so if you're not having a problem taking it, I suggest you continue with it for at least the six months.
There are many different treatments available for IC. It can take time to find exactly which treatments work best for each individual, but most of us do get there and most of us feel good most of the time.
Sending healing thoughts,
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
11-04-2002, 12:37 AM #3
- Join Date
- Jul 2001
Welcome! Your name tells me exactly how dejected you feel. You're not alone. There are lots of us here and some guys too. My pain started as a pulling sensation in my groin, then moved to my pubic bone, then to my urethra (which for me is shorter at least) too. I had unrelenting pain too. See if your other medicine is Elavil. That really helped me until the Elmiron kicked in. It took about 6 months before the Elmiron kicked in and now after a year on it I feel almost normal, although I have flares (I'm having one now). Nothing like the constant pain I used to have. Take care.
11-04-2002, 04:32 AM #4
- Join Date
- Dec 2000
- Yakima, WA, USA
Welcome aboard! You've found a wonderful resource here! Donna's right, you should probably hang out on the Elmiron to see if it will work out for you. Who knows, it could be your miracle! I'm sorry you're having such a rough time right now. Have you talked to your doctor about pain medication? It saved me from being confined to my bed. I don't know what I'd do without it.
Also, don't say that you'll never get married. There are lots of us on here who are in very loving relationships. Trust me on this one!!! I'm getting married in a few months and have been with a very wonderful fiance for 3 years now.
Take care of yourself! In the meantime, sending 1 million <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />~ Life's a Garden, Dig it. ~ Joe Dirte'
11-04-2002, 10:02 AM #5
Hello again everyone. Thankyou all for your kind words. Patrice, the other medicine Im on is imipram hcl. I take one of these at night. I also do take a pain medication.
Does anyone else have trouble sitting in unpadded places? Im just curious. As I said before it exasperates me. Thanks again everyone.In God I trust.
11-04-2002, 10:29 AM #6
<img src="graemlins/hi.gif" border="0" alt="[hi]" /> Hello and welcome, Im sorry to hear your so uncomfortable. Like most of us <yes i do sometimes find sitting very uncomfortable.Glad u finally found a good doc>Did u have a hydro done for your dio , iI dont know how it works for males to be dio . Well take care and read the hanbook the info there is great!Diet is so important too ! Sandra <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />
11-04-2002, 10:42 AM #7
First let me say how much I love your city. I visited Toronto in march. Me and a friend attended Wrestlemania x8. I love Canada.
I was diagnosed with the potassium test. Im still not convinced I have Ic. As I stated earlier I do not have all the symptoms. Then again I do have alot of them. Im going to stick with the elmiron. I hope it will work.In God I trust.
11-04-2002, 11:57 AM #8
- Join Date
- Oct 2002
ALTHOUGH THINGS ARE NOT PERFECT BECAUSE OF TRAIL OR PAIN...CONTINUE IN THANKSGIVING... AND DON'T EVEN BEGIN TO BLAME .... EVEN WHEN TIMES ARE HARD..FIERCE WINDS ARE BOUND TO BLOW.. GOD IS FOREVER ABLE... HOLD ON TO WHAT YOU KNOW..IMAGINE LIFE WITHOUT HIS LOVE... JOYWOULD CEASE TO BE..KEEP THANKING HIMFOR ALL THE THINGS...LOVE IMPARTS TO THEE... MOVE OUT OF "CAMP COMPLAINING"..NO WEAPON THAT IS KNOWN...ON EARTH CAN YIELD THE POWER ..PRAISE CAN DO ALONE... QUIT LOOKING AT THE FUTURE ..REDEEM THE TIME AT HAND...START EVERY DAY WITH WORSHIP..TO "THANK" IS A COMMAND...UNTIL WE SEE HIM COMING.. VICTORIOUS IN THE SKY...WE'LL RUN THE RACE WITH GRATITUDE ..XALTING GOD MOST HIGH.. YES THERE'LL BE GOOD TIMES AND YES SOME WILL BE BAD, BUT.....ZION WAITS IN GLORY...WHERE NONE ARE EVER SAD....
WELCOME TO THE BOARD...
<img src="graemlins/blink.gif" border="0" alt="[blink]" />LIL'BREN
11-04-2002, 12:33 PM #9
<img src="graemlins/hi.gif" border="0" alt="[hi]" /> Hi Destiny glad u had a good time here! Im also taking the elimiron its helped a bit but i still get bad flares, but ive only started it in July so it might take more time im told Take care see u later !Sandra <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" /> Remember we all dont always have the same symptons!
11-04-2002, 01:23 PM #10
- Join Date
- Sep 2002
- New York
Welcome to the board. Sorry to hear you are going through such a rough time right now. I was just wondering has your uro ever mentioned Pelvic Floor Dysfunction to you. I suffer from constant urethral pain also. I do not empty completely and I also have problems when I start urinating. (I have chronic pelvic pain and urinary frequency and urgency too,)
I do not know how IC varies in men and women. And some of my reasons for pain are Obgyn/IC related. My pelvic muscle spasm is severe and causes me a great amount of pain. Especially when sitting.
The reason I am bringing it up is because of your sitting difficulties. I read an article in my doctors office not long ago about how men with pelvic floor dysfuction had significant increases in pain when sitting.
I have gone to bio-feedback for treatment of my PFD but I continue to spasm. And I am certainly not sure if that is even what is causing some of your pain. But it was just a thought.
Since there are so many other related components/conditions to IC I just thought I would pass that info along. I hope you don't mind. I wish I could remember the magazine I read it in. But I can't.
Good Luck with your treatment, I will keep you in my prayers.Christine
11-04-2002, 01:48 PM #11
Hello again everyone. Lil' Bren thanks for your message. Christ is number 1 in my life. He is always the main reason to fight on through it all.
Christine thanks for the info. My doctor did not mention that to me. He really did not tell me much at all. Im hopeing I can find a better doctor soon. Then maybe I can learn more. Im sorry you have pain sitting as well. I know how you feel. I started on elmiron about 2 months ago. Im going to stick with it. Once again thanks for your kind words and info.In God I trust.
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