new here, Q about urethra sensations

[Jess82]

Hi all , I'm pretty new here. First I want to thank you for sharing so much- you have no idea how many hours I've been on here for support when nothing else is helping! I've almost burnt out my awesome mom & my great boyfriend with every conversation including my bladder.

So the Cliff notes for my story- I've always been the girl who has to pee. Sometimes I'll pee every 20 minutes, lots of pee, no pain- just weird and uncomfortable.

My abdomen was so swollen and tender around March 1 that I couldn't manage to wear any of my regular pants and I was peeing every 20, so I went to the Dr. thinking maybe I've been harboring a low grade bladder infection.

Chaos ensued, I have since had a cat scan, an in-office cysto, lots of pelvic exams, blood work, and UA. I'm about to finish a 10 day Doxycycline Rx in hopes of killing off a bacteria....that never showed up in testing...In fact nothing has shown up anywhere- anyone suprised? My in office cysto showed nothing (supposedly) but an irritation in my urethra.

I'm getting a 2nd opinion with a new urologist tomorrow because the first one wasn't taking me very seriously. I'm planning on asking for a lapro and hydro-cysto to be done at the same time, just to get it over with. I want to rule out endometriosis b/c my period has always been pretty rough too.

So here are my questions: does anyone else get a very intense full sensation almost to the point of dull burning in the urethra when you need to pee? It gets progressively worse for me once I get that feeling- I'll pee every 20 minutes until there is nothing to void, the urethra will keep 'saying' it's time to go. I'll end up in the tub (no soaps!) and it's like the urethra feels "open" & I just have to get it to shut up so I can get some sleep. Does anyone else identify with that sensation? It's not like any burning I've ever had with UTI's.

I also have a feeling like acid in my bladder and like it's bruised or has been kicked around. I have seen here that's pretty 'normal.' And if I don't go when I need to- wow- I get panicked, sweaty and borderline burst into tears. The worst is when I get there, and it's only 2 oz of pee. Grrr.

I'm also thinking about going on amytriptilene just to get me through the next few months. I'm 2 months away from graduating college- too bad it's hard to leave the house lately!! Ha- I'm a little depressed!

I'm doing an elimination diet, taking Pyridium and Ibuprofen sometimes 3x a day, and 1/2 a Vicodin when it's just too much. I'm also on Bc and levothyroxine.

Thanks to all of you for being here . Any thoughts would be greatly appreciated- Just hoping I'm on the right track. I have a really hard time asking for help, but here it is! !

[dmarie]

I had same urethral sensations!

When my symptoms began, the urethral burning was the worst!!! It was exactly as you described. After following the IC diet VERY strictly, I began to improve after about one month. Since having a diagnosis, I have been taking amptitriptyline and Elmiron and did a series of 9 bladder instillations and the urethral discomfort greatly improved. I still get this heavy and uncomfortable sensation at the top of my urethra/ base of bladder that reminds me I have to go every hour to two hours...it is just so much more tolerable. With time and treatment, you will feel better. Stick to that diet...live by that left column!!!!! It will most likely help tremendously!
Dawn

[leelee88]

Jess..Hello and

The feeling you have discibed is something I had alot of right after I was dg..
I would always have the urge feeling to pee even if I had just went, It was driving me crazy..My GYN put me on Elavil at night and Cymbalta in the mornings..I feel so much better now as far as the got to go feeling..

I also wanted to add that the Ibuprofen could be making you burn when you pee. I know I cannot take it. It causes intense burning for me.

Another thing you could be experiencing is PFD pelvic floor dysfuntion, I know I have that and it can cause you to have retention and burning..Just something you might want to check into.. Well good luck and if you need anything just let me know

[vm]

So very glad you found us. A lot of what you describe is very familiar to many of us. I hope as things move along with your 2nd uro that you are able to find treatments that will give you some relief. Most Icers do.

Very cool that the board has been such a help to you. It sure saved my sanity many a time when my bladder was driving me crazy and I felt so overwhelmed with it all. I hope it continues to be a big help to you.

[Jess82]

wow

Thank you thank you for your kind words- instant gratification to hear so many resounding yes's to my symptoms! I officially feel less alone!

Thanks for taking the time in your day to respond. I am so lucky to have found such support. I can't express how thankful I feel.
:woohoo: :woohoo:

[Rosalie]

Hi Jess , You are at the right place for help and support here. I reckon that the ICN saved my life and I mean that very seriously.
Most people find a level of medication, diet and lifestyle that helps improve the symptoms of IC. Keep working with your dr on medications and stick to the diet. You may eventually,after finding your triggers, be able to re-introduce some foods.

[born2swim]

You know, you sypmtoms sound too close to mine for me to comprehend. The only difference, is the "bruised bladder" feeling. My bladder doesn't seem to be bothering me. Tons of tests for gyno and uro issues, but my last pelvic exam demonstrated a VERY sensitive urethra. I was put on pyridium and an anitbiotic. I can't take NSAID's and today I'm going nuts with "menstrual" type pain. I've been spot bleeding for 3 weeks now, so it could actually by gyno pain... I too have had very bad periods (but with BC pills, they improved... until 5 months ago). Right before my period started, horrendous pain. I too always had to pee a lot, especially right before my period. My family joked that my period acts like a diuretic. They have talked about looking for endometriosis, but the urologist wants to scope me first to rule out IC. He doens't think I have it, but can't be sure without a scope. My gyno, who ID'd the urethra pain agreed with the scope and that I have urethra problems, not IC... but he wants me to follow an IC diet to avoid any bladder (urinary tract) irritants.

When I hold my bladder, I get that shakey, nauseating, tearful, anxious feeling. I remember being stuck in my car like that. It is so horrible that words can't do it justice. I got out, ran to the nearest bathroom to go a few drops. It is really getting old! The more active I am, the worse it is. I too, will graduate undergrad in 2 months (had to miss a month due to the severity of my urination... couldn't make it to campus). Your story is just so similar it's scary. I have no burning or incontinence, just frequency/urgency... small amounts each time. Drips even. It feels like my urethra is full but can't empty, so I strain and push to get it out, but that feeling never goes away. It wakes me at night. I have a constant pressure/bloated feeling, but times of pain far worse than menstrual cramps. I ended up in the ER twice for it. They are talking about endometriosis, but they want to follow through with all bladder studies. I am on Ditropan because they wanted to try and calm down my bladder (but it seems like the urethra is the problem). No improvement in symptoms and it has led to retention.

That feeling like you need to shut your urethra up... boy do I relate. I try baths and heating pads... but it doesn't really help much. It does help a little, until I have to pee again. It's terrible.

I have a cystoscope... and then from what I can tell, they are considering exploring to look for Endometriosis and if they don't see it, they'll do another bladder test that requires general anesthesia (hydrodistension?).

I just had to reply to yours... because 99% of it I can relate to. It's aweful.

I am trying the IC diet and have it down to 95% of irritants avoided. No difference yet. I was afraid the doctors would think I'm a head case too... but they say, "how often", "where's the pain", and "they still don't know why you have this problem". My new gyno is an expert with "tough cases" and I saw him last week and just love him. My internist called him Monday morning, they called me back immediately and got me in the following day. He was shocked by my symptoms and that a scope hasn't been done yet. I told him the uro's reasoning and he said, "But with the severity of those symptoms...". He has really taken control of my care. He even gave me his home number to call if I'm in rough shape. What a great guy.

Well... I know this doesn't help your symptoms, but I just wanted you to know that you are not alone!

[Jess82]

born2swim- have you tried any antibiotics? I just finished my doxy, and I am really hoping that does the trick. My old uro wanted me to try the doxy because it can kill mycoplasma which can be the cause of a Non-Specific Urethritis (NSU.) I'm really hoping this works. In the realm of throwing darts at least it's not invasive.

Yesterday I felt pretty normal (for me that means peeing every hour and a half or so) But it probably helps that I didn't have to leave the house. My symptoms also get worse the more active I am.

Do you think part of that is anxiety about being out and about and having a bad urge session? I get really embarassed having to excuse myself every 20 minutes at school - some of my classes are like 8 people, so they'll literally hold class until I get back sometimes! When I have to go like that I can't really pay attention anyway. I actually see my new uro on Thursday, and I'm going to see about the amytriptilene.

And what do we say to strangers when we aren't sure it's IC yet? I have a hard time expressing what's wrong to teachers and aquaintances. Just saying I'm not feeling well isn't cutting it now that it's been over a month.

[born2swim]

Yeah, I started having issues in November and December, but not that bad and after my period, they kind of dulled, so I thought I'd get better. January came around and I was miserible. By the time I got to my gyno's I was peeing 40 times a day, not sleeping, etc. I didn't know what was going on, so I was vague with my professors, and some suggested dropping (WHAT!!! I GRADUATE SOON!). So, I thought I should describe my symptoms (as little as I had to) so they could understand. They all were understanding, even those small classes. They said get up and go when you need to. Miss class when you need to, make up exams when you need to, etc. It was nice having so much help this semester. It was wonderful! I gave them updates, and they all wished me luck and kept me in the loop. Some students gave me their notes. School has been frustrating, but not nearly as unbearable as it was at first! I tell people I sort of know that I have a bladder problem. I'm pretty open, but then they always ask, what's wrong, and I say "Oh, I'm peeing up to 40 times a day. They think I have an inflammation issue going on. I'm on meds to try and help it". That is usually enough to stop questions because nobody with a normal bladder can understand what peeing 40 times a day is like.

I am currently on an antibiotic... Nitrofurantion. My doctor told me it is for urethra/bladder microorganisms. Hopefully it works. It's only been a week. He also added Pyridium to my Ditropan. I do feel a tad better in terms of urgency/frequency with the antibiotic/pyridium, but this antibiotic knocks me out (which is a good thing)! I wake up 2-3 times a night with less straining (15 minutes sometimes), compared to every 30-60 minutes with loads of straining. I generally only sleep 5-6 hours a night, so it is nice to wake up every 2 hours instead.

They really think I have a urethra problem... but dear lord my pelvis is hurting. I started my period and it felt like every muscle in my pelvis had a charlie horse! I hurt like crazy. I'm going to see about getting something to help with that. My gyno said that my period (being an inflammatory response) irritated my pelvis and organs and that is why I hurt a lot and feel worse during my period. I can't take NSAID's, so that is a huge bummer for me!

I don't think going out for me it has an anxiety component. The more I do around the apartment (cleaning for example), the worse I feel. I went to the movie and sat there for 2 hours, but then we got up, I peed. Drove to get ice cream, peed. Drove to my friend's apartment, peed. Sat and ate for a few minutes, then peed. That was all in an hour... but the whole time in the movie I was fine. I do think about it more when I'm out though, so that way I can think about which bathroom on campus I like more and how to get there in a pinch (how sad is that?).

I hope they ID your problem so you can accept it and work with it (if it is IC, urethritis, or something else). Your situation sounds exactly like me. I was going every 5-10 minutes in January/February and that is when I missed school. I couldn't make the commute. After my period stopped, things improved a day (every 30 minutes) and I could get to classes. I am now on birth control that stops my period, but obviously it isn't working as I have been spot bleeing for 3 weeks and started my period 2 days ago. Oh well... hopefully the next round won't happen and my symptoms won't get "aggrivated".

I'll be curious to know how you do, especially considering just how similar we are in terms of symptoms and stage of identification. I have a cystoscope in just over a week, so maybe they'll ID something then?

[lutznancy]

Me too

Some of the symptoms, urethra spasms I call them, plague me too. I'm newly diagnosed. Not going to take oral Elmiron, but will do "rescue installations." I'm waiting to get the prescription before I go back to the urologist to be "taught" how to do them--hubby going too. I got a second opinion from another urologist before I made up my mind about meds. This site is a godsend for me!! Here's what I'm having a problem with--my urologist said that my bladder only filled to 700cc, while I was asleep. He says a normal bladder goes up to 1,100 cc, so mine has "shrunk" to 1/2 the normal size. I read somewhere that the bladder cannot shrink. My urologist seems very concerned abou that. He says it'll get worse if I don't do meds. He was very vague about what he "saw" inside my bladder when he did the cystoscope while I was asleep. He's really concerned about the shrinking thing. I had a flare last week--feels like I have to go all the time. Pressure. The only way for me to describe it is lots of pressure on my bottom. I have anal fissure problems and vaginal burning too. Oh, I'm 64, so some of that is age! This all started a few years ago, but I was being treated for UTIs when there really was none.

[Jess82]

I have a cystoscope in just over a week, so maybe they'll ID something then?

I hope I did that correctly, and I hope I'm following proper forum etiquette by posting back and forth so much- this is all really new to me, so I hope I'm not irritating anyone! Please let me know if I am!

About the cystoscopy, I had mine ~2 weeks ago and all they found was a slight irritation of the urethra. They also had to dilate my urethra apparently, but didn't offer any explanation for that (and it didn't help with any symptoms.) The whole event was excruciating- the uro and nurse said it should not have caused so much pain.
From reading here, I have found that only extreme IC can be seen in an In-Office cysto- you really have to be under so that they can fill the bladder to capacity, which makes sense. I believe that's also when they can identify your true bladder capacity etc. which I would think is important in diagnosis.

I personally wished that I hadn't wasted time with a procedure that only gave me a false sense of confidence that I didn't have IC. I see my new uro tomorrow and hope to schedule a lapro and hydrodistention cysto to be done at the same time so that will only have to be anasthetized (sp?) once.

I would say maybe talk to your doc about the same idea, since they already mentioned looking for endo. Based on our similar urethral sensations, I would not wish upon you the experience I had. I literally had blood in my urine for 24 hours, and everytime I peed it was like a thin knife in there with it. I have had all sort of procedures, surgeries, but that cysto was crazy pain. I will never do anything like it while conscious again. I think the hydro/cysto is a more comprehensive test- if you have to be invasive at all, especially will the poor urethra , then you may as well figure out all you can.

[born2swim]

I'm new here too, but your etiquette looks good to me!

I am so scared for the cystoscope. When doing a pelvic exam, my gyno barely touched the urethra and that was extremely painful. I'm so scared to have them put a scope up the very thing that hurts! I have Lortab to take 30 minutes prior and he uses a numbing gel for the opening of the urethra and fills the entire urethra with numbing gel. So... hopefully it won't be as bad as I am thinking...

After the scope, we'll talk about what he would want to do next. If he has to go under general anesthesia, I will talk with my gyno about looking for endometriosis. They wonder if I have it, but there isn't a clear finding on pelvic exam or on ultrasound to convince him to look. I wish someone had confidence in my treatment! I'm tired of "try this med" approach.

I've been having retention now, due to the Ditropan I'm on, so that will be fun during the scope. I hope it isn't a problem. I am taking pyridium... so I wonder if I have to stop that before the scope too? My urethra hurts, but not while I urinate. That is the weird part for them. My pelvis hurts (especially with my period, which the gyno said is exacerbating whatever pelvic problem I have). My urethra hurt when pressed on, but when I urinate, I just have trouble (frequency, urgency, can't start easily, dribble, strain, etc).

My doctors definately want me to do the scope, then go from there... I so wish I could be knocked out for it!

Thanks for the information. I'll ask about combining both surgeries (if we have to) to rule out everything at once! That would be nice!

[sweetpea_ae]

I can definately relate. Most of my pain is not burning either. It is a strange bruised, sore, feeling around my clitoris and urethra. I am also the girl that always hasto pee. My friends and family always ask "are you sure you dont hafto pee before we go"? Like I'm 3. I experience panic and severe pain if I cannot get to a restroom immediately after I have the sensation. I am newly diagnosed and still not clear what is going on. I am sure of one thing this is the closest thing I could imagine hell to be.

[born2swim]

I have referred to my life, when my symptoms were at the worst, as living in an inner circle of hell.

I too have the question, "are you sure you don't have to go" or "do you need a pit stop". The week before my period, my family would ask where I go every 30 minutes, and I just shrug and say, "it's the week before my period". It's been like that since I was 13.

I have neve had trouble like this before though (the last 5 months being horrible). I am in the process of getting diagnosed. Urethra or bladder, what ever it is, I want them to ID it first and then give me a plan to get better. I do feel somewhat better with pyridium, an antibiotic, and now valium (for my period pain/trouble). I don't want to take pain meds... so the valium was their middle ground option. I'm doing a little better as my period has started to calm down. Now, all I have to do is prepare me for anothe horrible cycle in 2 weeks...

[sweetpea_ae]

I really don't understand why they would do a scopy w/o anesthesia. If you do have ic stretching the bladder and filling it up is excruciating. It is absolutely inhumane if they do this to you without knocking you out. Are they doing a distention as well? I would abstain from the scopy until they agreed to anesthesia. That is absolutely absurd to me. Some drs just simply aren't fully educated on this education or how to treat it. I think everyone should refer their uro to this site!!