Urethral burning-what is wrong with me?

[jeanababy]

Hello All!
I first posted about 4 months ago and since then have been on a journey that I’m sure all of you have been on. My only symptom is urethral burning and soreness (especially when sitting). I don’t have frequency, urgency, sensitivity to food, bladder pain, or pain before or after urination. Urine and urethral cultures are always negative. My Gyn suspected IC and referred me to a urologist. I specifically asked the Uro about IC and she said that I didn’t have any of the symptoms so that wasn’t my problem. I had a CT scan and a cysto with anesthesia (I do not think she performed the hydrodistention since she didn’t think I had IC). All she found was a little swelling and redness in the urethra but no sign of infection. She tried a different antiobiotic that didn’t help and Bextra for inflammation. After two months with no improvement she said she couldn’t do any more for me and referred me to a Urogyno at a very well known teaching hospital here in North Carolina. This doctor examined me and looked at my voiding diary and pretty much didn’t have any idea of what I had. She did prescribe yet a different antibiotic and Urimax. She said “You need to stop thinking about this and move on with your life—stress is going to make it take longer for you to get better”. How can it get better if no one knows what it is or how to treat it? How can I stop thinking about it when it affects every minute of my day—especially when I’m sitting which is what I do for eight hours a day at work (I did order an IC cushion today). I guess my question is, can you have IC (perhaps in the early stages) without the usual symptoms? Does anyone else have just urethral burning? Thanks!
Jean

[felineperson3]

I have pain and pressure along with the burning and the frequency feeling issue when my IC is acting up. Maybe someone else can help you where uretheal burning is their only symptom--

I hope you find someone with the answers to help you--:kiss:

Hugs & blessings---:cat:

[liznazz]

I get some pain (a lot before my period), but most of my symptoms are urethral. It's very tender and sore, and I have to be careful how I sit down. I also experience urethral pressure. What has helped me is the IC Diet , Celebrex and Atarax. I find th diet to be CRUCIAL to my symptoms. I was diagnosed with cysto/hydrodistension, but the uro said before he did this procedure I looked very normal. Hope this helps.

[Katrina]

I believe I have heard people say that was there only symptom before.

(((hugs)))

If this doctor of yours isn't helping you...you need to get a different doctor.


I hope you feel better soon.

[sing_to_you]

I sure hope you feel better soon sending a hug and a puppy
:dogrun: :puppy: :kiss: sing_to_you I have not had the burning but I have had a very bad dryness feeling after showering a dryness way up inside were it almost felt like I had a dry tampon in me but I didn't, and this has happened about 3 or 4 times, and lasted the whole day and night. And I have had problems sitting for sure I have to sit very carfully not because of burning just because of pain.

[ICNDonna]

I'm thinking it might be a good idea to see a different urologist for a third opinion. There has to be something there causing your pain. If your current doctors aren't willing to work with you to find a cause, it may be time to move on.

Sending warm healing thoughts,
Donna

[jala]

My IC pain is urethral burning, too. I rarely have bladder pain and never have frequency.

My Dr. told me to treat my urethra flares the same way as full bladder flares because, even if it only hurts mainly in the urethra, it can still be caused by the same things that cause bladder flares. So far, he has been very right.

I treat my urethra pain with the same treatments everyone else uses for IC bladder flares. I take prelief for quick, but short lived pain relef and DMSO for long term pain relief. Diet control prevents all pain for me. Jala.

[Ginny Doll]

My main sympton 4 years ago was the uretheral burning and trouble sitting. The cushion helped some and I still use it. I found that neurontin was helpful and even more so with nortriptlilne added. Elmiron has helped so much. I can sit now but it took some time . I always felt like my bladder was hanging too low and it felt like glass was shattering or bees were stinging me when I sat too long or when i urinated. I am in a remission since last July and can eat almost anything but soy and vinegar now. And white wine is the worst. I drink only water though and that has been a great help. On a rare occasion now i can feel my urine getting warmer. That is usually a signal that I better drink more water and watch what i eat the rest of that day. Here is something strange. I will urinate fine when I wake up. Then if i have a bowel movement I can almost predict that when I urinate again soon after ,even a small amount, there will be burning. I was diagnosed with vulvadynia as well. Luckily I have that under control and can wear jeans again. Adding the nortriptiline has made a huge difference. I had no luck with Elavil. If you had told me 4 years ago i would be sitting great, I would not have believed you. I thought i would go nuts having to lie down to find comfort form the burning. But here I am sitting super since last July. Wishing you a quick remission and hoping you get another opinion. I had three! Best, Carolyn

[Dixiefireball]

I live in South Carolina I don't know what part of North Carolina your from but I have a great Uro here he is in spartanburg i'm in Gaffney.
I also have the urethral burning with my other systoms i do think you may should find you another uro that you know sp. in IC.
if you want any more information please pm me and i will send you the information on my doctor.
sending you hugs and prayers
rhonda

[jeanababy]

Thanks everyone for your responses. It sounds like I need to try harder with the IC diet while I'm waiting on all of these doctor appointments. Since I have burning 24/7 it seems like I don't get "flares" after eating or drinking something wrong. Does that mean I'm "flaring" all the time? I see my gyn this Friday--he has thought all along that it's IC. He will probably want me to see yet another uro. I think there is one practice here in town that I haven't tried yet.

[kcjmom]

I also have urethral burning, mine is mostly after I go. I am fine while I go, but once I wipe I am sore for sometimes up to an hour after.

[classics]

Same here. Burning is constant, but worse just after urinating. Back in December when I was at my worst, it burned when peeing and I had a lot more frequency. Now, if I drink a lot of liguids. I go about every 90 minutes and I go a lot, probably about 6 ounces at a time.. If I only drink at meal times, I can wait as long as 3 hours or all night. I was getting up once a night, but after starting amitriptyline, I'm zonked out all night.

There are so many different variations of IC. I don't have pelvic pain, but do have a constant feeling of pressure, or a feeling that I could go pee any time, even if I just went.

[Calli]

Originally posted by jala
My IC pain is urethral burning, too. I rarely have bladder pain and never have frequency.

My Dr. told me to treat my urethra flares the same way as full bladder flares because, even if it only hurts mainly in the urethra, it can still be caused by the same things that cause bladder flares. So far, he has been very right.

I treat my urethra pain with the same treatments everyone else uses for IC bladder flares. I take prelief for quick, but short lived pain relef and DMSO for long term pain relief. Diet control prevents all pain for me. Jala.

I have urethra burning also but also frequency. I am starting DMSO on monday, 1 a week for 8 weeks. I hope it works

As for diets: In november and december I only drank water and ate a little bit of toasted bread with butter (lost almost 10 kilos). Didn't really work though.

[jala]

Interestingly, the diet helped me learn that I am allergic to wheat. It caused constipation or diarrhea, which caused bladder pain. I ate chicken and white rice (butter and salt only) every day for a month and then added items in one at a time. Jala.

[rezag]

I am sorry about your pain and know how you feel. A few months ago everytime I would urinate almost after which I had pain so bad that it wasn't possible to sit sometimes. I would just go lay in bed. In fact I would avoid urinating period! I knew that when I pee'd that it would hurt so I would just hold it! Especially if I wasn't at home, if I was a school or work it was hardly going to happen because once it did it felt like I needed to urinate every five seconds so that there wouldn't be pain. I can remember sitting on the toilet for hours just in hopes that the burning from the urethra would go away. Now it comes and goes. Like today I am on my monthy and it hurts but oh well. I hope yours gets better.

-Kristin

[cathyada]

I have posted serveral times about my urethra burning--in fact just a few weeks ago I posted again about burning that time had cramping and backache and pelvic pain--like menstral cramps--cant be menstral cause I have no female parts anymore due to a hysterectomy last Sept 2003. Ok now, I started again last night--sometimes it goes away in a few hours, most times it will be about a week then it goes away and i have relief--then out of nowhere--here we go again-burning--i wonder why we are being punished like this?--well I didnt take any meds. big mistake--now I am burning still in the urethra--I feel like I am all alone and no one believes me--I have been elmiron for about 4-5 weeks--obviously no improvment, I know it takes time for the elmiron--I have gone without many certain foods--doesnt make any difference--I still burn in the urethra. I do have pyridium plus and just popped one--this isnt normal to live like this--this sucks...the uro told me i might need a mri to see if I could have some problem (and he named it) with the urethra that only shows up on an MRI. Right now I feel terrible and I am crying--nothing new--just grin and bare it--hang in there--Hugs Cathy

[Sarojini]

Oh, poor Cathy... not again :( I am so sorry to hear you're in a flare again. I don't know what to tell you, except that my heart goes out to you and that I'm sending lots of :grouphug: and :kissing: your way. Be good to yourself tonight. I hope your flare is short!

[jeanababy]

I saw my 4th doctor this past Monday. Two other ladies on this board see him and said he was wonderful and he truly was. It was well worth the four hour drive. He said that he thought my urethral burning was actually the base of my bladder burning not the urethra (I can't tell--it just burns down there but nowhere that I can actually touch). He does feel that I have IC even though I don't have the "classic" symptoms. I have been on elmiron, atarax, and elavil for about 7 weeks and already feel better so he is going to continue those meds. Another woman on the boards (Diane) said that drinking Almond milk helped her urethral burning. I didn't like the taste but that is just me. On the hyster sisters boards someone said that Silk brand soymilk helped urethral burning so I tried it. It worked for me. I asked the doctor Monday about it and he said "absolutely, the estrogen in soy milk can help the symptoms". I thought at first it was just the elmiron kicking in early but when I ran out of soy milk and didn't drink it for 2 days the burning came back. It might make you feel better. I also have very low back pain and pelvic pain sometimes but I can deal with that. I just wanted the burning to stop and it pretty much has.
Jean

[cathyada]

Now--just a sec--I thought that I read that "soy" products on the IC diet are bad for the bladder??? Can someone help me out here-hey--IM willing to try anything--thanks Cathy and glad you found a uro to help you--hugs and blessings Cathy

[jeanababy]

Soymilk is usually a no-no for most people. I don't have any sensitivity to food. I would burn no matter what I ate or didn't eat. I burned all the time; it wasn't related to urinating. If you have food sensitivity you may not be able to tolerate it. I'm hoping the soymilk will keep giving me relief until the elmiron heals my bladder.

[poetgirl]

Urethral burning/pain and frequency are usually my primary symptoms when IC acts up. I was doing really great until recently, when I decided to wean myself completely off Elmiron. I was OK for about a month, but then my symptoms began to slowly return. I've had burning and some pain on and off for the past two weeks, and although the frequency hasn't been too bad, several days ago I had (for me, anyway) a bad bout of it where I had to get up several times at night (usually the Detrol and Elavil keep that under control) and within a 12 hour period, I'd probably urinated about 8 or 9 times (with all of that lovely burning to accompany it) and felt constant pressure on my bladder/urethra during the entire time. I also ended up with severe diarrhea (the flare kicked up my IBS -- how fun) so I was completely miserable and all but living on my toilet the entire day. It's a good thing they let me work from home when I don't feel so good.

Every time I urinate now, I have to rinse with cool water to relieve the burning sensation, and had to take Urised for a couple of days as well. I'm back on the Elmiron again and I pray it helps me again like it did before. In the meantime, I may also have to go back to doing the baking soda sitz baths, which help relieve the burning too.

Hope you feel better soon.

[poetgirl]

Is it just soymilk or all soy products that can be helpful? I don't have many food sensitivities, but the lactose in dairy can trigger problems because of my IBS, so I've been slowly adding in soy-based products to replace most of the dairy in my diet. (I actually found decent soy cheese and I like the Stonyfield Farms O'Soy yogurt.) I've hesitated on the soymilk, because of that weird soy aftertaste, but maybe it is worth getting used to, if it can help with urethral burning.

[jeanababy]

The only experience I have is with the soymilk. It's the Silk brand organic soymilk Vanilla flavor (this is the brand that was recommended and the only one I have tried). It is lactose free and I like the taste. It's sweet. If you can afford the extra calories the chocolate flavor is delicious. When I first read on another message board about someone getting relief from drinking it I was VERY, VERY skeptical but I tried it. I use about a cup on my cereal in the morning and have another eight ounces in the evening. It's working for me and a couple of other women on the hyster sisters message board. I know it sounds really far out but it works for some of us. When I don't drink it I start burning again in about 36 hours. It does not do anything for the pelvic and lower back pain.

[July]

I also have urethral burning as a primary symptom, and get that inner dry feeling that sing_to_you on the boards described in an earlier post after I shower. In fact, when I first got symptoms I told the dr. it felt like a tampon was in there but not placed right. And yes, the burning is sure to come after a bowel movement. In fact, my anus burns and feels tight too. Sometimes a little blood on the toilet paper but not always. I hate when it burns from front to bottom down there! Sitting can be excruciating. Sometimes I get sudden urges to urinate too with it. It helps some to sit forward (in car tilt seat forward) so most pressure is on back of thighs.

[jeanababy]

I know exactly what you are saying about the feeling that a tampon is not in there right and if you could just pull something out you would feel better. Kind of a hot, dry, burny feeling. I bought an IC cushion to sit on at work and it helped somewhat but I haven't had to use it for the last few weeks and I probably sit 7 out of 8 hours at work.

[cathyada]

I cant even sit for 7 hours at work--in fact right now Im not able to work--I am dibilitated with this pain and burning--I am on elmiron and now they started me on "prosed" DS--supposed to help you and makes you pee purple--I have to say that right now, I feel pretty good. I ordered a low acid coffee on the net--the prelief didnt help at all. the feeling of the tampon thing in the urethra--I know the feeling--dont you wish you could just pull and be all better? :pray:

[Sarojini]

Wow... you guys describe this feeling well... I'm totally inflamed down there right now because I have a true UTI on top of my IC, and I was JUST telling my husband that it feels like something is "stuck" halfway up my urethra!! A tampon halfway inserted is a good way to describe that.

Also, the description of getting anal burning and rectal pain along with IC pain is accurate for me too... when I'm flaring badly that happens to me. Sometimes it is like a bee stinging my bum repeatedly, and then it often mellows out to an ache all through the crotch, front to back.

Hmmph. And I thought I was the only one with these sensations....thanks for the support :D