Thread: I'd Like to Introduce Myself
12-13-2007, 11:39 AM #1
- Join Date
- Dec 2007
I'd Like to Introduce Myself
Hello everyone. I have had what my primary doctor intitially diagnosed as chronic prostatitis for five years now. According to my urologist, chronic prostatitis and interstitial cystitis are just two different names for the same disease. He may not be correct about that, but I still thought it would be useful to post on this board, since my symptoms are so similar to those which I have read about here.
I got this awful thing when I was 18. I'm 24 now and while I have had some improvement in that time, it is still a major burden in my life. It has drastically altered my personality and dashed many of my hopes for the future.
The interesting thing is that pain is not one of my symptoms at all. It is all urinary: frequency, urgency, weak stream, retention.
Well, like I said, I just wanted to introduce myself, and let you know that there is one other person out there like you dealing with this crap. Also, I'm curious to know what medications/therapies have worked best for all of you.
12-13-2007, 12:28 PM #2
Have you checked out the book, "A headache in the Pelvis." It seems to be greared to folks with your symptoms. Welcome.mom_in_ma
12-13-2007, 02:19 PM #3
Hello and to the ICN..
The meds that have worked best on my frequency and urgency are Tofranil and hydroxine..Hugs
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
Diet Reference Sheet:
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
12-13-2007, 02:30 PM #4
- Join Date
- Jan 2003
to the icn
12-13-2007, 02:40 PM #5
hi and be patient, you will find what works best for you. i use bladder q that you can read about in one of the links above i believe, it definetly helped my frequency and urgency until i was officially diagnosed with the cysto/hydro--now of course, i am on elmiron which has only been 2 1/2 weeks..keep fingers crossed. try and follow the diet on here also, that may help you get started. Good luck and God bless
12-14-2007, 03:18 AM #6
I have seen other post from men on here. I think it was in the remission section on the board. You should check it out and see if your symptoms are similar. There is great info on this site and many ideas from others.Dx Pelvic Pain Syndrome 10/2007. Cysto/Hydro show Negative for IC
Levbid for urethra spasms (haven't needed this for 2 years)
Pyridium when needed
Macrobid for after intercourse (haven't needed this for 2 years)
tried and stopped Elavil because of side effects
Ice packs are almost instant relief for my external burning/ and I love MSM gel/hydro cortizone cream
Trigger Point injections for tender and tight Levatar Ani muscles (did not work)
12-14-2007, 04:46 AM #7
12-14-2007, 05:40 AM #8
Hi and welcome! I would say what works best for me is the Elavil, but I also do bladder instills 2 times a week and they help me the most! Good luck to you!Lisa
Current meds:Elavil, Lortab as needed, Vivelle dot hormone patch 0.1mg, estrace cream, lidocaine ointment, pepcid
Diagnosis: IC in 1999 , IBS, Pelvic floor dysfunction, vulvodynia, vestibulitis, chronic low back pain, scoliosis, hunners ulcers on bladder, hysterectomy 2/08, fibro 3/08, sciataca
Me and my girls, my son, me and my wonderful fiance, and our puppy Miley (who loves to cuddle).
12-14-2007, 08:13 AM #9
For my frequency issues - the antihistimine at night and 3x per week at home rescue instillations have cut my voiding times in 1/2.
DX IC Aug 2007 -DX PFD July 2007
Severe Allergies since 18 months old
Meds:Aterax 25 mg @ night (only during allergy season - now)
Valium 2.5 to 5 mg 2x per day for PFD
Elavil 50 mg @ night
Bladder Instillations (at home) 3x per week -
My recipe is: Lidocaine, Heparin and Sodium Bicarb
Meds I could not tolerate: Elmiron and Lyrica
12-14-2007, 08:23 AM #10
Hello and to the ICN.Sharon
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
If not there, then here
Link to the ICN Patient Handbook:
Link to the IC Diet:
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
12-14-2007, 10:01 AM #11DeAnna:
Irritable Bowel Syndrome
PLEASE FORGIVE SPELLING
12-14-2007, 10:09 AM #12
- Join Date
- Oct 2007
IC diet and Desert Harvest aloe instantly helped with my urgency. Also, marshmallow root and chamomile tea surprisingly. If I'm having a really bad time (always related to something I ate), I will use a half tsp or less of baking soda in 8 oz glass of water and that relieves it somewhat quickly. BUT if you have high blood pressure or high sodium, you need to be careful with that. Check that one out with your doc. Bladder instills help for pain. Hope you find something that works for you!Karen
12-14-2007, 11:54 AM #13
- Join Date
- Dec 2007
Thank you all for the warm welcome and the suggestions.
12-18-2007, 11:55 AM #14
- Join Date
- Dec 2006
Welcome. I am a 26 yr old male with IC. Been dealing with it for like a year and 1/2. I can def relate to some of the frustrations and life changes because of IC you mentioned. Also I was intitially diagnosed as chronic prostatitis too.
What meds are you taking. How are you feeling?
12-20-2007, 11:17 AM #15
- Join Date
- Dec 2007
Right now I am taking Flomax and Elmiron, and just recently started a trial of Vesicare.
I suppose that I am doing well, relatively speaking. When I hear the stories of the pain that some people on this forum suffer, I am glad that my situation is not that bad. As I said in my first post, pain is not a prominent feature of my symptoms. Only a handful of times in over 5 years have I had any instances of pain.
But it does suck to have to go to the bathroom as much as I do. Also, the feeling of not completely emptying out my bladder is very annoying. Often I will go to the bathroom, and then go right back two minutes later to try and empty out.
My condition waxes and wanes, with occasional flares. I can usually find a "comfort zone" with a little sanity by just staying home and watching TV, or reading a book or something like that. But going out to bars, or parties, or any kind of socializing is very difficult. It sucks because I know it is limiting my opportunities.
What meds are you on, and how are you feeling?
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