Urethral urgency ?!

[slukic]

Dear all,


can anybody tell me:
Would this be IC? Does anybody have this? What helps? Any medications

Urgency all the time- urethral, sometimes wakes me up at night (this is new! I use to sleep like a baby), it is not better when I go to the bathrom,
sometimes feeling like your vagina is pinched with clamps (sorry for being so explisit)

very little or no bladder pain
very little burn, (I found what helps!)
normal frequency (I can hold it so my frequency is normal but I feel urgnecy all the time)

What to do with urethral urgency? Will Elavil help? Any other med?
(Valium did not help!)

[lnseagraves]

Hey,

I am not a doctor, but your symptoms are possibly IC. Please go to your doctor and bring maybe an article on IC and tell him/her you think you might have it. There are many drugs out there (like detrol) that will help frequency. From what I understand, Elavil is a pain killer and helps with the IC pain. As you said you have very little pain, Elavil is probably not the drug for you but only your doctor can truly help you with that. Good luck!

[mightyjoe]

From what I have read it does seem like you could have IC. My wife will be starting treatment with Elavil very soon through a research study. Elavil is actually an old antidepressant that is used in low dosages to treat chronic pain...it is prescribed in much, much higher dosages for depression. Most ICers start out at around 10mg and increase as needed. I have read that for depression it is more like 150mg. My wife's study will start at 10mg and gradually increase to no higher than 50mg. For more info on elavil you can go directly to the link on the forums page that has it in the description (Antidepressants, etc.) or you can go to search forums and put in elavil...there are tons of people's experiences with elavil on there and they may be very helpful for you...good luck!

[kell447]

i have the same exact symptoms as you. No bladder pain or burning, but it feels like i have to go to the bathroom constantly. My doctor just recently did a scope and found that my urethra had a lot of inflammation and the base of my bladder was red (but the rest of my bladder looked fine, ruling out IC but diagnosing me with urethritis) The inflammation of the urethra has irritated the base of my bladder, and the base of the bladder is what causes urgency/frequency when it is irritated. I am taking an anitbiotic for three months, and im going to start urethral suppsoitories this week. My understanding they are uncomfortable, but my dr says there has been a big success rate. Anyway, I am not a docotor but by the way you describe your symptoms, it sounds like me, infammation of the urethra and abse of bladder. Good luck!

[slukic]

Please keep me posted with the treatment! And if you had any luck with it.
How did the antibiotics work for you?

[slukic]

Sleeping at night and period

Two important questions also:

Does any of you get better during the period?
I have what I call "a sweet day" 1st or 2nd day of my period when the flow is the strongest when I am almost pain free. Next day is hell again but there is this one day when life is normal. And this is so far the only pattern I found.
Anybody noticed a similar thing?


Second, what helps you sleep at night? I use to sleep like a baby - but now the urgency wakes me up? Do you recommend anything for sleeping?
Tylenol PM?...or Anything else?

[Anjita]

Detrol

Hi ,

first of all...i feel with you. I used to have nights where i had to get up a few times, than i started Detrol and after 2 weeks i only had to go once in the night. That was awesome. Also during the day i was able to hold it for 2 hours. I took it for a year ..and stopped it a week ago as it gave me problems peeing relaxed. I had to press it out like crazy and that was very uncomfortable. Also the last few months it did not really work anymore ..i still had to pee alot. I got a bladder distension and after 1 months i felt that i did not have to go that much. The frequency was less ..i did NOT have to get up at night. Unfortunately this only lasted 2 months..i am back to the old now. I go pee and then 15 min later i have the urge again. I can still hold it for at least 2 hours but the urge is there...I started to go to the bathroom at night again But i can pee kind of normal...but i am thinking of going back to Detrol...Just ask your doc about it.
Also you should try to stick with the diet..i am trying it too.
You said you found something what helps you with the burning. What is it? I always have burning! And when i get my period it is even worst.

Good Luck...email us anytime!
ANJA

[lan]

Kell447 - My symptoms are very similar to yours. All of my discomfort is in my urethra. My uro did an in-office scope and he said that my bladder looked good but there was inflamation at the base of the bladder near the urethra. I had already been on 3 different courses of antibiotics prior to the scope. So my doctor put me on a low dose antibiotic hoping that it would take care of the remaining inflamation but, after a few weeks of the low dose, I was still very uncomfortable so he sent me to an IC specialist who said that I have IC. Let me know how the suppositories work for you - I might want to look into them. My current medication is 35mg of Elavil each night.

slukic - The Elavil seems to help me with urgency and it definitely helps me sleep at night.

mightyjoe - I would be interested to hear more about the study. I started with 25mg of elavil and I am gradually increasing to 50mg. I am curious to see if I feel any better going from 25 to 50mg. What is the purpose of the study?

I am keeping you all in my thoughts and sending healing energy...linda

[born2swim]

Dear all,

Urgency all the time- urethral, sometimes wakes me up at night (this is new! I use to sleep like a baby), it is not better when I go to the bathrom,

You described me exactly. It wasn't until my physical exams, transvaginal ultrasounds, and cystoscope did they give me urethral pain. At first my urgency built up over a couple of months (worse with my period) and got so severe that I felt like I'd be sick if I didn't try to urinate (so I'd strain and feel sick and frequency was up to +40 times a day). If I held it, I would be sick or I was afraid I'd burst and have an accident. I never did, but I was afraid. Valium didn't help. Overactive bladder meds didn't help. I was diagnosed with IC after 6 months of this. I hope you find answers to your trouble. I hope they did a urethral culture to make sure you don't have some hard to ID bacteria.

Good luck!

[mary124]

I had all sorts of urgency and frequency. Have you tried Vesicare? One of my doctors put me on this about 2 months ago, and I'm doing great. I use to get up 6-7 times a night, now its like 1-2 times. I tried all sorts of medication, but nothing worked before. Good luck

[Roxie2007]

HI! Sorry to hear you're having the IC symptoms. You didn't say you were doing the IC diet......it's VERY important to figure out what's causing flares and making pain worse. Is your dr. an IC specialist?
Elavil works great for bladder pain and some urethra pain. Have you tried MSM gel? That has worked wonders for my urethra pain. I started out using it 3 times a day but now just use it once a day.
I hope you get your pain under control.........good luck! Roxie

[born2swim]

Mary124, I was on Detrol, Vesicare, and Ditropan. Nothing helped. My uro-gyno did a test and she said that my bladder isn't overactive... but the more it filled the worse the signal to pee got (to where I would get nautious and was bawling). It was a terrible test, but she said that my bladder didn't even fill half-way and I was in bad shape... and it wasn't overactive. She said no wonder the overactive bladder meds didn't help me one bit. They actually made me worse because those drugs gave me severe retention. Drove me nuts. I felt like I had to pee all the time, but then add retention to it... what a nightmare. Add that to the dry mouth (dry everything... even my eyes got so dry that I got bumps under my eyelids due to the irritation of dry eyes)... I hated the OAB meds! I seem to get some help from the Atarax and Ultram. I'm looking into alternative options like aloe vera. Figured as long as it is safe to take, why not try it!

I had all sorts of urgency and frequency. Have you tried Vesicare? One of my doctors put me on this about 2 months ago, and I'm doing great. I use to get up 6-7 times a night, now its like 1-2 times. I tried all sorts of medication, but nothing worked before. Good luck

[mignumi]

urethral pain/periods

To the person with just urethral pain that wanes suddenly with her period:

This is me exactly!! I have the exact same day, one or two days after my period starts...I can't make any sense of it and my urogyno blew it off. I've seen that a lot of the people with IC have endometriosis, so I have an appointment with a different gyno next week to see if maybe that has anything to do with my symptoms.

I thought I would describe my progress in case we had any more similarities. My problems began with a UTI that didn't want to go away. They treated it first with macrobid and then later with something stronger. Eventually I quit testing positive for bacteria but the pain-- just in my urethra-- kept getting worse and worse until I was balled up on the bed like a baby.

Eventually I was diagnosed with IC, but my doctor doesn't seem to understand that my bladder is the least of my worries-- it's my urethra that hurts.

I noticed the pattern with my period after 3 or 4 months. I thought I had figured something out, but had my hopes dashed one month when I didn't feel that day of relief. It was like one day of freedom from this constant source of sadness. But I haven't ruled out that there isn't still a pattern, but it's not as strong as it used to be.

For the past couple of months, now when I urinate, I have bubbles in my urine. And for the past couple of weeks, not only do I have bubbles in my urine, sometimes after I urinate and am all dressed and out of the bathroom, I feel a bubble come out of my urethra. It's like there is gas trapped in my urethra.

If any of this makes any sense to you or rings a bell, and if you have any solutions, please let me know.

I am taking Vesicare (10 mg) a night, which really helped, although it took about two weeks to take effect, and also Lyrica (100 mg 3x a day), which took the help that the Vesicare was giving me to another level. I also take Ultram and Darvocet (alternating) on top of the Lyrica for the pain. Overall I have made it manageable, but certainly not pain-free. I would love to wake up without feeling this awful interminable pain.

Take care. I wish you the very best.
Rebecca

[born2swim]

I saw 3 gynos. My first one thought IC or endo. After the uro didn't see anything with a cystoscope and OAB meds made me worse, he thought about exploring for Endo (because it gets worse right before my period hits... debilitating pain... in a heap bawling for hours... then my period starts and I hurt, but not quite like that). I saw another gyno for a second opinion (since we were talking about surgery) and he said, "its a uro problem... and your period just makes the symptoms worse". He sent me to a uro-gyno that did a potassium sensitivity test and checked to see how much I could hold in my bladder before I'd die. Those tests SUCKED but it basically assured them it was IC and not Endometriosis. They put me on Seasonique to control my periods months ago (stop them as much as possible).

I hope this helped! I do know what you mean about the bubbles and it is weird, but I'll sort of sqiurm to get that last "burp" out. Not normal if you ask me!

[domawa]

Me Too!

I have not been diagnosed with IC. My urologist says it is just low estrogen and atrophy. However, I have all the symptoms with the urethra. It burns constantly, especially bad after urinating. Sometimes the pain will abate to a more comfortable level and sometimes it stays with me all day. Mine seems to get better when I lay down flat on my back. I only get up twice in the night to urinate. I began Elavil after convincing my gyn. that I had to have something for the pain. My urologist wouldn't give me anything-said there was nothing to help me with my pain. After my fifth visit with the urologist just visiting with me (no exam) I demanded he do a cystoscope. He said my bladder looked fine but my urethra was red and inflammed. The test was very painful. I went to my family doctor today, who is great, listened and seemed to know a little about IC. He gave me the option of starting on Elmiron even though I haven't been diagnosed. I don't know what to do. My pain is mainly urethral. I have had some bladder pain, but very mild so far. I have been dealing with this for 7 months now. Do you all have any advice. Can Elmiron hurt you if you really don't have IC?