Anyone out there like me?

[tarynduf]

When I saw urethral pain as a new board it made so excited! I've talked to alot of people with IC, but am having difficulties finding people with the same symptoms as me. I was wondering if there is anyone out there that is like me!

I only experience urethral burning. No frequency or urgency, no pain during intercourse (unless I'm in the middle of a flare), no pain in my bladder. Just my urethra! I pretty much always flare in the morning and evening, and then it varies how frequently, how long, and how intense my flares are during the day. This may sound easy to some people with IC who experience the other symptoms, but my urethral burning is SO bad it has really taken over my life. Sometimes I wonder if I even have IC since that is the only symptom that I have.... Also, I haven't found the diet making one iota of difference.

So, is there anyone out there like me? I would love to hear from you! Any advice, or flare strategies, or living strategies! I hope you are out there :)

[ICNDonna]

I don't have much urethral burning; mine is in the bladder.

Donna

[suzannes]

I actually had a lot of urethral burning in the beginning, elavil and PT has helped.

Suzanne

[taylormae]

So has ur uro or dr done any tests on you confirming that u do infact have IC bc ive heard of other uro problems that sound like your but its NOT IC..With IC your bladder is irritated so i would suspect if u did have IC you would have some kind of pain from your bladder. You might just have Cystitis which is not the same as IC..

Hope it helped

[tarynduf]

I recently had a cystoscopy with hydrodistension which my Dr thinks indicates IC. I had a smaller bladder capacity than the average person (850 ml vs. 1100 ish I think), and my bladder did look inflamed. However, he said it's early enough that he can't confirm that it is IC for sure (not that you really can, but you know what I mean), but rather than say come back when it gets worse and we can diagnose it for sure (which is what my first uro said), he said he wants to be more agressive and say I think this is what you have, lets try to treat it now. So, he does think that the surgery indicated that I have it....

[Bella Spirit]

Hi tarynduf :)

Have you been tested for infections? I know this sounds like an obvious question but I have a similar condition to you which I believe was caused by a ureaplasma infection that went undiagnosed for too long. Ureaplasma and Mycoplasma tests are not regular tests that doctors perform so you will have to ask for them specifically. Many times these microorganisms are to blame for urethral pain because they mimic urethral syndrome symptoms.

[ICNDonna]

Now that you're almost certain that what you have is interstitial cystitis, you can take some steps to help get your symptoms under control. Are you following an IC diet? If not, I suggest you begin today --- you'll find the link to the food lists in my signature below. Some ICers report that this single step helps more than anything.

:grouphug:
Donna

[tarynduf]

I have tried the diet with no success. I stayed on it for 3 months (very strictly) and did not feel any better. I'm still on it now, but with more freedom. I went for Korean last night and had SO much spicy food, and do not feel any worse for it. The same happened when I went on a road trip a couple weeks past and had lots of alcohol, chilli, chips, etc., and did not feel any different. I am fairly certain I am not diet sensitive...unfortunately :(

Can I ask what the condition is that you have from the infections? I will bring it up with my doctor as a possibility.

[Bella Spirit]

I have urethral syndrome but my specialist and I both agree that it may have been caused by having a ureaplasma infection too long. Sometimes you may just have a ureaplasma or mycoplasma infection which causes nongonococcal urethritis (which I believe is similar to having gonorrhoea). If I was you I’d ask your doctor for various urine tests which include ureaplasma and mycoplasma tests.

I am also not affected by IC-unfriendly foods. But I do admit that there are certain foods that I have to avoid – wheat, msg, certain spices, salad dressings and vinegar, just to name a few. Perhaps you should start a food diary just in case there is a particular food that may be triggering you off.
In Australia we have a product called Ural which contains sodium bicarbonate. I drink a glass of this every time I am flaring and I find this immediately takes the edge off. I also take glucosamine + chondroitin tablets which has helped me out immensely. It took about 3-4 months to really work but I have to say that it was a life saver as I now have my urethral syndrome under control.

Don’t worry too much, as time goes by you will find out what works and what doesn’t. The people on here are great and will be a great support for you in your first stages of diagnosis. I hope you find some relief soon :)

[tarynduf]

Does anyone know how much this test costs? Everyone says it's expensive, but no one says how much! I would really like to know if it is something I can afford. I also live in Canada....

[Tuckersmom]

My worst and most constant symptom of IC has always been urethral burning. It's been 19 years now, and most nights I still sleep with ice packs. The burning is way better now than before I was diagnosed and started treatment 8 years ago. The burning used to literally rule my life and I was so miserable. Thankfully, it's tolerable most days and sometimes absent completely.

[shortstuff]

Hi there. My uro did a cysto (no hydro) in December and saw inflammation at the bladder neck but my actual bladder looked fine. So far (thank God) my bladder has not bothered me. So, he decided to do an instillation before he finished because his theory was that if the instillation helped my pain then the pain was coming from my bladder. It didn't help. But funny thing, the lidocaine gel that he inserted into my urethra before my procedure actually made me feel a bit better! Maybe your doctor would consider going this route to see if your pain is coming from your bladder. If it is, you can only benefit by starting treatment now.

[MelindaP]

I posted on some other threads, but I am back after a nice 1.5 years remission. I don't know why I flared up. Might have been because I was pretty much eating/drinking everything & had reduced my Elmiron down to 1 pill a night. I never thought I was diet sensitive, but flared BIG TIME after having coffee one morning, then a Jazz apple the next day. Looks like the monster is back! But it is not as bad as it was when it came on the first time. These last flares also caused badder pain, which was a new symptom :(. The thing that really helped me the most is Elmiron, Urelle, Nortryptlyne 20mg & being on a low dose BCP (Loestrin FE24). I hope you can find some relief soon. I remember when Ice packs were my best friend, sat on them 24/7. This disease is so frustrating! Hang in there!
MelindaP :)

[tandem]

tarynduf, I have IC but like you you I always have urethral burning and pain as well - mornings are bad and nights just like you are explaining it.
It takes few hours in the morning to start feeling a bit better. I find sometimes very hot bath or sprying hot water on that area helps a bit, like gets the blood flow up a bit and it might help with reducing inflimation. So going in to the bathroom many times at nights and early am is a real pain - burning pain with baldder spasams.

[Jamey]

Hi tarynduf :)

Have you been tested for infections? I know this sounds like an obvious question but I have a similar condition to you which I believe was caused by a ureaplasma infection that went undiagnosed for too long. Ureaplasma and Mycoplasma tests are not regular tests that doctors perform so you will have to ask for them specifically. Many times these microorganisms are to blame for urethral pain because they mimic urethral syndrome symptoms.

you may also want your dr to do cultures for staph and strep. I had to treat for both repeatedly. the way my uro explained it was ther were sort of like layers of infection and we had to go back and forth treating for both staph and strep.