Thread: New IC diagnosis
01-12-2005, 08:58 AM #1
New IC diagnosis
Hi! I have been suffering from pain for 8 years now and was recently and finally diagnosed with IC. My symptoms have always been different than the classic IC symptoms and this led to years and years of seeing different urologists ( up to 8 now) and many agonizing days. Because my pain is specifically in my urethra and not my bladder and because I have no problem with urgency, I have been shuffled along and thought to be making up pain by some doctors. I still haven't found one that truly understands the pain from flare ups. Most recently, I went to Houston and had a DMSO treatment done, and I have never been in more pain in all my life. Has anyone ever heard of IC only in the urethra? I am so happy to have found this site. Although I hate to see anyone else is having to go through this, I am glad to be able to communicate with people who truly understand.
01-12-2005, 09:09 AM #2
I am sorry that you are going through this. I know how you feel, I have been in a bad flare for 5 months. I have heard of some people whose only symptom from IC is urethral pain. Unfortunately urethral pain is one of my symptoms and I consider it my worst symptom. I think I read somewhere that having only urethral pain could be considered a mild form of IC. But, anyone who has had urethral pain probably doesn't consider it mild. I know I don't. Take care.
01-12-2005, 10:45 AM #3
Hello and ...
I would like to suggest that you check out the Patient Handbook. You can find it at: www.ic-network.com/handbook There is alot of information available there that just might answer most of your questions. I do not suffer much urethera pain, so I cannot answer your questions, personally. I bet you will hear from others who can. That is the way it works around here.
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.
01-12-2005, 11:01 AM #4
Hi there and
I know there are several people who post here who have only urethral pain as a symptom of their IC -- hopefully they'll see your post and be able to chat with you about it.
In the meantime, I'm glad you found us and I hope you're able to find some type of treatments that help you out. I know when I'm having urethral symptoms it can really really be painful****
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. 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.
01-12-2005, 11:54 AM #5
and to the ICN family.
I'm truely sorry you are having to go threw this but you have found a very careing support group right here.
are you doing the IC diet?? I think that might help alot of your systom you said you had urethra pain is that the only place your having pain??
this could be due to not following the IC diet it could also be due to an infection. just a few ideas i have but i'm no doctor.
I hope you feel better soon and something starts to work for you soon also.
sending you tons of hugs and prayers
please remember we are here and we do care.
RhondaMedicine taken daily or as needed:
1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
2. MS.Cotin 100mg 3x daily
3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
4. Fentanyl 100 mg Change every 48hrs.
5. Gentamicin 80mg install after each rescue treatment
5 Leviquin 500mg self start as needed.
6. Klonopin 1 or 2 daily as needed.
7. Prosed/DS as 1 every 6hrs as needed.
I have IC, but IC doesn't have me anymore!
01-12-2005, 02:03 PM #6
Thank you to everyone for the support! It is so nice to have someone to talk to.
01-20-2005, 06:26 AM #7
Sorry about my very late welcome! I just read your post and had to tell you that mine too started with just my urethra giving me troubles. And it only bothered me went I peed, not before or after. Felt like peeing broken glass. Then a little later in the year, it changed to a feeling of "needing to bear down", and felt like it was spasming. Then it started to occasionally bug me after my trip to the bathroom In Sept I was put on Ditropan for it, and that worked great, until the UTI I got, then the whole mess started. My bladder got in on the act and it was hell, lol. Now that things are coming under some sort of control, I feel like the sypmtoms are going backwards, now I am back to just mostly urethra troubles, hope it keeps on going to how I felt before that too!! LOL
Take care, again, Welcome!!
01-20-2005, 07:06 AM #8
I too am new to this site and IC. I also know and understand the urethra pain. Mine, until starting Elmiron, was constant stinging and irritation even when not flaring. Urinating was not and is not painful. But the stinging and bladder spasms were a different story. I just recently started Elmiron and it is working beautifully. Even on the stinging.
In the flare times - for me - lying down with the heating pad between my legs helped alot. Also 1/2 of a pain pill -propox.
You have found a true treasure in finding this network. The information and the people here are invaluable. It helps and comforts just to know that you are not alone. That many people have walked the road you are on now.
I ordered the Survival Handbook. It helped me learn alot and gave me the right words to help me discuss what I was feeling with my doctor. Also, the pictures helped me to show him exactly where my pain is. Somewhere on this site is also a pain level guide. It always takes me a long time to find it but it is so helpful in relating to myself, my doctor and family, exactly how I'm feeling at any given time. And try the diet. It really does work.
I hope this day will be a good one for you. May you find your symptoms lessened and pain lightened. Just remember - others care and know how you feel. You are not alone.
01-20-2005, 10:00 AM #9
Thanks you for all the wonderful welcomes! I finally feel that I have a group of supporters how know and understand what it is like. Thanks again!
01-20-2005, 10:19 AM #10
Hi Jessica and welcome to ICN!
My IC's worse symptom by far is urethra pain, sometimes being so awful I can hardly stand it. Though on an especially nasty flare, my bladder also puts up a good fight for first place honors. I've found baking soda in water, Azo, or Uristat to be helpful when I just can't take the pain anymore.
Sorry to hear you've had to go through so many urologists! You'll find you're not alone here in that experience either!
01-20-2005, 03:28 PM #11
Hi and ! I just wanted to add that I also have alot of urethra pain. I also have pelvic pain, spasms when I urinate, etc. I take daily pain meds for it all. My doctor recently gave me a presciption with refills for Lidocaine gel. It's the topical gel they use in their office to numb the urethra, before catheters and stuff like that. I am now able to use it at home, and it's very soothing. I also used to have all over vaginal pain along with the urethra pain, but it seems to be just in the urethra area now. It drives me crazy. I just wanted to mention the Lidocaine gel, maybe it's something you could ask your doctor about. I too had horrible urethra pain after the DMSO treatments. I cannot tolerate catheters at all. They set my urethra pain off something horrible, and I wind up feeling like I'm peeing broken glass for weeks. My urologist finally decided not to use them on me anymore unless absolutely necessary..like a surgery or something. I understand how frustrating it is to have to see so many different doctors, I was mis-diagnosed for a long time and saw several urologists before I found one who is compassionate about pain. I hope you find a great one soon, and have some relief from your pain quickly. Take care!Jeannie
The Lord your God is the faithful God who for a thousand generations keeps his promises.
01-20-2005, 03:39 PM #12
So sorry you've been suffering for so long without a diagnoses. Some great advise from other posts.
Hope you get relief soon
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