Any ideas on what initially caused your urethreal pain?

[rb7]

Just wondering if anyone has ideas to their origin of urethreal syndrome. Since this is different than just the normal "IC" that most people on the network talk about having. Normal IC er's have the abdominal discomfort,urgency and frequency but don't have the urethreal pain, discomfort and burning.

What I have alot of times feels like right inside the urethrea irritation and pain. Sometimes its the surface of the urethrea onthe outside that feels irritated. I am just trying to make sense of all this. My dr has me trying different medications but the pain/nerves doesnt seem to want to calm down. I felt good for about 1 1/2 and then it just started acting up again. I hadnt changed my eating etc.

Just wanted to see if there seemed to be alot of variety in causes or if most people dont seem to know what has been the cause.

[Bella Spirit]

I believe my urethral syndrome was caused by an undiagnosed Ureaplasma infection that was found too late resulting in urethral damage.

[ICNDonna]

Interstitial cystitis almost always includes at least some urethral discomfort. It's not at all unusual for an IC patient to be first diagnosed with urethral syndrome.

Donna

[CherylSLP]

I was under the impression that most of us ICers had some type of urethral pain. The nerves are all connected, so it makes sense that bladder pain could shoot different places in the pelvic area.

I think beyond that, when I get pain it is caused by external irritants in that area such as soap (I now use gentle fragrance free soap). Toilet paper has to be fragrance free too. I also get pain when I have the least little extra amount of yeast (it does not even have to be a full out infection). The yeast can creep up in there, major ouch.

Topical Lidocaine helps a lot.

[CheshireKat]

I'm kinda happy someone touched on this, I was afraid I was the only one with this symptom XD Its so uncomfortable and I have gotten to where I hate wearing certain pants or shorts because it starts to rub against me. However, I have no idea how it started really. Its just always been a symptom along with my other IC symptoms.

I had my last doctor put lidicaine there the last time I was there, which did help. But I mean, how would I get access to lidicaine everyday. I don't think you can :/ And I certainly can't schedule appointments for every other week. I have school to go too.

[ck1]

Dear CheshireCat -

Ask your doctor for a lidocaine jelly prescription if it helps!

Make sure it is in the UroJet packaging so you can squirt it into your urethra. You might have to call around to a couple of different pharmacies to get it in this form.

UroJet information: http://www.ims-limited.com/lidocaine.htm

Good luck.

[CheshireKat]

Ohh thank you very much!

Also, I noticed it started to get really bad after I had the actual checking for my IC, they used a catheter (Which I did not respond to well at ALL), is there a possibility that maybe the catheter could have done something to me without me really knowing? Or is this really just another side effect. (Like I said, I did have it before it just wasn't as bad as it is lately so it worries me)

[ck1]

I personally think that yes, catheters hurt my urethra. 12 instills for bladder pain. Then the urethral pain started.

[Silverfox]

My urethra symptoms began from the beginning of my life, as I remember. The first time I saw a Doctor about it he called it urethritis. But, I also felt sick all over and thought for many years that I had some rare disease no one else ever had. I searched many years for answers. Finally, I learned that i suffered nerve damage (or dysfunction). The worst dysfunction was to the sensory nerves (small painful nerves) in the distal endings of my body. This sensory nerve damage was painful also in my hands, feet and bladder/urethra. The damage was also included my autonomic nerves and some in motor nerves. My doc said to me that I was their rarest patient. Well, I have never believed this to be true. My symptoms of urethritis/ bladder pelvic pains are coming from within the actual small sensory nerves that occur in great numbers is this sensitive area of the human body. There are many causes of neuropathy.
Foxy

[gabrielasil77]

My urethra symptoms began from the beginning of my life, as I remember. The first time I saw a Doctor about it he called it urethritis. But, I also felt sick all over and thought for many years that I had some rare disease no one else ever had. I searched many years for answers. Finally, I learned that i suffered nerve damage (or dysfunction). The worst dysfunction was to the sensory nerves (small painful nerves) in the distal endings of my body. This sensory nerve damage was painful also in my hands, feet and bladder/urethra. The damage was also included my autonomic nerves and some in motor nerves. My doc said to me that I was their rarest patient. Well, I have never believed this to be true. My symptoms of urethritis/ bladder pelvic pains are coming from within the actual small sensory nerves that occur in great numbers is this sensitive area of the human body. There are many causes of neuropathy.
Foxy


Hello there:
I have urethral syndrome too. Actually my bigest discomford is in the urethra moren then the bladder it self.
Just the idea of Being catetherized was unthinkble for me, but was necesary to put my bladder inflammation under control with the instills so I did. My Dr also recommend urethral dylations. After the first one, the amount of relief was amazing!!! My urethra dsnt hurt as much now, I get instills once a week. I did 4 sesions of dylations.
Amazing!
The Doctor explain to me, some time the glands in the urethra get infected, and is like having a pimple with liquid inside the glads so thats hurts, some times dylations help to let that acumulated liquid go free and get relief. Couple sesions and is enought. normaly one every other week.

[valerie michele]

For about a year and a half my ic pain was mostly in my bladder. Not flares though, everyday after eating I would have increased pain. Since mid July I have had urethral burning, sometimes more like pounding, in addition to the bladder pain. Pyridium is all that I have used so far. It helps for a while but it seems that just sitting will start to pick up the pain again. I think it must be the weight of my body pushing on the urethra that does this? Also wearing jeans aggravates it. I also have more urethral pain after urinating. My dr. thinks it is the IC spreading or progressing. I am going to bring my jeans to a seamstress and she is going to cut out the crocth area, where there are overlapping seams, and put in some loose stretchy fabric in that area instead. I don't know if it will help but I am going to try it. I wear tunic type tops so no one will notice my "crotchless-patched" jeans. I also just got a donut cushion from the local medical supply store but its just to small, and I'm a thin person, the hole area is actually not big enough. Maybe I'll have to make one or modify it somehow. Please if anyone has successful tips to help with this please let me know. Best wishes to all.

[ck1]

Valerie, have you tried pelvic floor therapy? You may see some old posts from me ... I haven't posted lately because after just a couple of pelvic floor therapy visits, I am getting sooooo much better.

My pain was just like yours, exactly.

[beceav]

After I void I have urethral pain. My Belly is so swollen and I am so exhausted. Is this normal? I feel like crap today.....:bonk:

[izazen]

How does your urethral discomfort manifest itself?

I am ok sitting but, when I am flaring, standing and walking are my problem areas.

I will feel a pinching, stabbing, urgency spasm that only lasts a second but is very uncomfortable. Then it will subside for a minute or two and return. I try to stop and relax myself, do a little deep breathing, or maybe squat down to the floor and pretend I'm tying my shoe lace or something. It is possible to distract myself momentarily but they always will come back.

My PFD therapist recommends vaginal Kegel's for these "spasms."

[catlover11]

I know my urethral pain started right after I started using Estrace vaginal cream. It was awful. Since it leaks from the vagina, you sit all day in this junk, no doubt in my mind it irritated my urethra.

[Eccles]

Mine was initially caused by a large kidney stone that I was told was 'all in my head' by urologist for several years, despite my urine being bright red. it was made much worse by a stent being fitted between my bladder and kidney.