Please respond; very nervous about strange symptoms!

[acs80]

Hi, I'm very concerned about my symptoms and hope someone out there will have the patience to read this post and give me some input.

I've had quite a few UTIs (and they've really been UTIs with leucocytes and nitrites in my urine), all related to sex. My doctor prescribed a low-dose prophylactic antibiotic for me to take any time I had intercourse, and that seemed to stave off all UTIs for a while. About two months ago, though, I was on vacation, had sex with my boyfriend, and took the antibiotic like I always do; the day afterward, I started to get some symptoms that were unlike any UTI I had ever had. I had a severe sore throat and the feeling of having to pee all the time, although there was no real burning or pain that I normally have with a UTI. I was on a cruise, and went to the ship's doctor, who gave me two urinalyses: the first was negative (possibly because I still had the prophylactic antibiotic in my system) and the second showed signs of an infection. I was given a seven day course of Cipro, which I took, but never felt better. After returning home, I still had the same feeling of never having relief after peeing...not pain, exactly, but the feeling of always having to "go", although it was never really urgent - I could hold it for hours and hours. This sensation would be with me most of the time - and would of course get worse when I really focused on the bladder and urethra - and would be worse on some days and almost completely better on others for about two days at a time. My doctor put me on Detrol LA and I took it for about two weeks but it didn't do anything so she suggested that I stop the medication. Also, she prescribed some topical Lidocaine gel which I can insert directly into my urethra, and this actually seems to help a little with the pain, although I'm not sure if that's just a psychological effect. I went to see another urologist last week and he prescribed some Urised, which I've been taking for about seven days. Three days ago I actually woke up and felt totally normal all of a sudden - absolutely no urge or anything. It was wonderful. Yesterday, however, I hadn't had any water to drink for a few hours and finally went pee and the urine was quite concentrated - so I think it may have been a little irritating to my urethra. Ever since then, I've been feeling a mild constant urge to pee (although it's not as bad as it was originally). I'm also about a week away from my period and feeling the usual PMS estrogen symptoms: bloating and full breasts and the like. I should mention that the first time this happened, I was also a few days before my period. Also, throughout much of this 2-month experience, I've had a mild sore throat...not as bad as the full-blown sore throat I had right at the beginning of this episode, but still a little sore, all the same. And I've been quite fatigued.

I've had an ultrasound and X-Ray, and everything has come back normal. I know that neither of these tests will rule out or diagnose IC, and I asked my urologist - who actually has quite a few patients with IC, which leads me to believe that he isn't opposed to diagnosing people with the disorder - whether or not he thought I had IC. He said no, and thought that my bladder had just "taken a beating", at which point he prescribed the aforementioned Urised (this was all last week). He said that generally people need to have these symptoms for nine months before being diagnosed, and he said that from his experience, people with IC seem like they're going "crazy" with the pain and discomfort and he didn't think I was in that category.

My questions are: isn't IC generally associated with pain? I know pain isn't a prerequisite, and there are people with IC who don't have pain, but many posts I've read indicate that the bladder feels like it's burning, there's abdominal pain, etc. The only time I have anything remotely pain-like is when I have very concentrated urine, and then it feels like my urethra is a little irritated, but it generally goes away 30 min. or so after I pee. Also, although I have trouble falling asleep because I'm worried, once I do finally drift off, I usually have to get up just once - sometimes not at all, if I take an Ambien to sleep - to go to the bathroom.

This discomfort is just very annoying, and also worrisome because it's not going away and I'm not sure what's causing it, either. But I'm very worried about IC and I don't want to keep waiting for a diagnosis if that's in fact what I have. Then again, everyone that's posting describes their experience as really debilitating and crippling, and I don't think I'm in that category, nor do I hope that I will be. I can exercise (although running does become a little uncomfortable; it's best if I do something that's low impact), I can teach class (I'm a graduate student), and still do things like go to the movies or go for a trip or something. It's just that I'm very conscious of my bladder and the feeling that I have to go...although it's not urgent or painful, just sometimes accompanied by a brief sensation in what seems to be my bladder.

Thanks so much if you've made it this far and if you've read all I've written. Does my story sound familiar to any of you? Does it seem too mild to be IC? I know it's impossible for anyone to diagnose, but I'm deathly afraid of Interstitial Cystitis and am hoping with every fiber of my being that that's not what I have. Any input anyone can offer is very, very much appreciated!

[Silverfern]

Hi there and welcome!

I've got IC but I don't have crippling debilitating pain (whew!!! am I grateful). As your uro said, I do feel like I'm going 'crazy' with the burning and discomfort and pressure sometimes....just not PAIN. Not everyone with IC has pain, although undoubtedly the more severe case you have, the more likelihood of pain I'm sure.

I don't think your sore throat would be tied up with IC (just my opinion you understand), but I don't think I've ever read that as being an IC symptom. Most IC sufferers seem to have nocturia (night time peeing), although not everyone. That's probably my worst symptom as it keeps me awake most of the night and drives me insane.

If I were you I'd try the IC diet....you'll find it in the IC Patient Handbook. Maybe you're eating or drinking something that's irritating your bladder.....coffee, cranberry juice, chocolate, citrus, carbonated drinks etc.

I'm sure somebody will be along soon to help you more as I'm a real novice still in the IC 'game' and have still got heaps to learn myself. Good luck though and I hope you find some answers very soon.

Hugs
Lynne

[Babs RN]

Did the uro mention the potassium sensitivity test? There is also the PUF questionaire that rates some of your symptoms. The one thing about IC is that we all present differently. While I am not a doc, quite a few of your symptoms are consistent with the diagnosis. The other question is diet? There are people who are able to keep their IC under control with diet. The patient handbook is quite helpful in outlining the methods of diagnosis as well in addition to outlining the IC diet. For example, caffiene is a trigger for some people. There are alot of people who do not have pain as a major symptom. The ICN has been a wonderful place--I don't know what I would have done without it.

Welcome to the ICN and let us know how we can best help you as you begin the journey towards diagnosis.

Hugs and :welcome: ,
Barb :grouphug:

[callie0767]

i too just had a nasty bladder infection ( pretty bad according to the nurse) with symptoms you describe minus the sore throat and was prescribed cipro twice.neither which has helped.i finally was prescribed bactrim and finally got rid of the infection.i had the burning,frequency espec. at night - up every 5 minutes so no sleep for me. hope this helps

[ICNDonna]

What you have "might" be IC, but could also be something else. I think it's a good idea for you to work with your doctor towards a diagnosis.

Sending gentle hugs,
Donna

[acs80]

Thanks very much for your feedback! I was just taking a look around the site and found under the "Patient Handbook" section the link to "Measuring Pain" (located at http://www.ic-network.com/handbook/scale.html). According to this scale, I've been at a "2" at the highest, I think, possibly a "3" on the very worst day I've had since this whole experience started almost two months ago. Is this low level of "pain"/discomfort something that you all have experienced, or have you endured pain that is listed farther up on the scale? Some of these episodes sound absolutely horrifying.

I also wanted to point out that I've been very conscientous about my diet recently, since I was having similar thinking that some of you suggested. So I've just been drinking water - no coffee, no carbonated anything - and eating relatively mild foods. Although I understand that different things affect different people, so I may have to try trial and error.

Does anyone have any idea if my bladder could just be irritated from a UTI that I had two months ago, and is just taking a long time to heal? Is the bladder like other parts of the body in that sometimes in the healing process it can be become temporarily more uncomfortable than it was originally (like for example when a flesh wound really starts to itch or ache when it starts to heal/scab over?) as it begins to get better? And for those of you that have had legitimate bacterial UTIs (that is, not just IC flare-ups that feel like UTIs): did they always feel exactly the same way, or did the symptoms sometimes vary a little from infection to infection?

So sorry for all the questions. I'm grateful for any help you can offer, and I'm so humbled by all your kindness. It seems to be the most difficult times in our lives when you realize other people's capacity for support and caring.

[acs80]

Oh, and one last thing: can someone explain in greater detail what the potassium sensitivity test is? I'm not familiar with it. Is this used in place of the cystoscopy exam to diagnose IC?

[acs80]

Okay, sorry, one really final question. So it's 1:15 a.m. now and the last time I went to the bathroom was about 5:30 p.m., which means I haven't urinated in about 7.5 hours. I feel a little silly writing this because some of you tell your stories about having to go 60 times a day, which sounds terrifying. This is what I don't understand, though: do you just FEEL like you could go 60 times a day, or is it that you actually truly have to go, like if you don't you'll explode? Even though I haven't peed in almost 8 hours, I've still felt this underlying pressure around my urethra for that entire time; I'm just able to hold the urine for hours and hours because I know my bladder isn't full and the feeling of having to pee isn't urgent, it's just kind of nagging and always present. I guess I don't understand what "urinary frequency" and "urgency" are...I suppose "urgency" must mean that you absolutely can't hold the urine anymore and if you don't go you'll have an accident?

Thanks so much again for your help.

[massagedoula]

If I held my urine for 7.5 hours I would not have an accident. However the "urgency feeling" would be so strong that I would be probably vomiting and hysterical with pain.

[Silverfern]

Wow! over 7 hours between pees.....how wonderful. There's no way in this world (even with the threat of supreme torture) could I go that long. I'm luckier than a lot of sufferers as I can last about 2 hours during the day (on a good day), but during the night it's often about every hour. On a good night maybe 3-4 times during the night. It just becomes so so uncomfortable to hold it that the only relief I can get is to pee. The burning pressure just gets overwhelming and you can't think of anything else but your bladder and the urge to pee. It's quite hard to actually explain it to be honest.

With urgency, you get an incredibly strong overwhelming urge to pee, right out of the blue....no warning at all, and sometimes if I don't pee RIGHT NOW I have an accident. Sometimes I pee my pants on the way to the toilet. It's not something you have any control over at all.....one second you don't have any urge to pee at all, the next the urge is so strong you're peeing your pants....horrible horrible sensation believe me.

I can't help you with your other questions but I'm sure there's heaps of people who can.

Hugs
Lynne

[massagedoula]

Huh...maybe now that you describe it, Silverfern, maybe I don't get urgency cause I ALWAYS feel like I have to pee. Some times it is worse than others..but I always feel it there..even when it is just a few little drops. I can hold it during the day if I have to. Today I was stuck in traffic for 2.5 hours and I held it the whole time. However, I felt like I had to pee the whole time, and even after I got home and finally went I still felt like I had to go about 5 sec after the initial relief. Typing this makes me have to go even more so I will stop writing. Will taking an anticholinergic like oxybutinin cause me to stop having this constant feeling like I have to pee?

[Silverfern]

(massagedoula)

I don't have the continuous urge to pee (gee! that must be just awful), but I can't remember what a 'normal' urge to pee is. My urge to pee now is always accompanied by burning, pressure and a feeling of my bladder bursting if I don't pee (even if I KNOW my bladder can't possibly be full). I'm just trying to remember what it was like having that lovely gentle easy urge to 'go and pee when you're ready, but there's no urgency about it' feeling. To think that we took that feeling so much for granted! Wow! what I wouldn't give to get that feeling back, as I'm sure others on this site would to.

I couldn't take oxybutynin as even on a tiny dose it affected my breathing. Might be worth investigating for you though.

Hugs
Lynne

[MarthaB]

:) hi all I can say is that you definately don't have to have urgency and frequency to have IC, some people have both and some have either, I have urgency, but I do get up about 4 to 5 times during the night. Also not every one on this board pees 60 times a day, some pee a lot less, most IC ers have a small bladder, but some have a normal bladder size like me, I have the same symptoms as lynne with the pressure when i need to go to the toilet, and for some reason it is a lot worse at night, some times i have to roll out of bed to go to the toilet, because the pressure and pain is so bad, but once I have been it is instant relief, untill the next time I have to go, I hope someone will come along and explain to you about the pottassium test, I never had that done, but I believe it is very reliable in diagnosing IC. take care martha

[DanaF]

ACS80 - Did you ever find out what your diagnosis was?
I have very similar symptoms to you, except they didn't come on suddenly - I sort of have had them since I was a child- so I'm not sure about yours - Let me know if you found out anything, cause even though I'm diagnosed with it, I don't know if I have it either - there is no clear diagnosis. A lot of people say the underlying issue with these problems is Pelvic Floor dysfunction - Has anyone talked to you about that?

[Cheries]

I really think it might be a good idea to see a gynecologist. Have you been tested for other problems? Perhaps your partner gave you a bacterial infection or something. It would be a good idea just to rule it out. Also, check your estrogen as this can cause a lot of urinary infections and urethral pain if it is low.

Good luck. The best thing you can do is what you are doing which is ask questions. Don't be satisfied until you get better and keep looking into things.

[m123]

I have the exact same symptoms as you. I woke up one day and I had to go use the bathroom, but unlike normally, the need to pee didn't go away. I felt as if I still had to go, even though if I went, almost nothing would come out since my bladder has not filled up. I don't feel any burning or have any pain, and I'm not going crazy. :P My trips to the bathroom are not urgent, and I too can hold it in for up to 7 hours on a good day (10 at night, I can go the whole night without getting up). But usually after 2 hours, even if I had not had that much to drink, I would start feeling the need to go use the bathroom that wouldn't go away. If I drink lots of water on a good day, I would still have to go about the same time as if I barely drank any liquid.

Also, every time I go, I would feel mild irritation in what seems to be my urethra. It goes away after half an hour. If I get past that without going, I can hold it in for several hours. The less I go and the more time I put between going, the less I need to go and the longer before I feel the need to go use the bathroom.

For about 2 weeks I had that constant feeling to go pee, but now, I don't know if I'm going though remission or milk and bladder training are working out well, but today (5-6 weeks so far) I went 5 hours without NEEDING to go use the bathroom, and when I last went, I didn't feel any irritation or need to go again afterwards that I felt before.

I was wondering, do you also have what feels like spasms? If you do, try not to strain when you go. That'll make it worse. Also, drink lots of water and follow the IC diet just in case...no spicy, caffeine, alcohol and soda. I gave up all those even though diet doesn't seem to affect me at all. (I've had cranberry and lemonade constantly because I thought I had an infection)

I'm sorry for the lenghty little thing I typed up here. I just want to also say that I have never been "officially" diagnosed with IC...I refuse to have a cystoscopy/hydro because I heard that sometimes it takes mild IC (which is what I think I have) and makes it worse. I know I don't have a bacterial infection because cultures came back negative, but I might also have pelvic floor dysfunction.

Since you have a sore throat, I would also suggest being tested for viral infections. They do not show up in regular urine cultures which typically test for only bacteria.

[Lisa Person]

In response to this whole thread, i found it very insightful from everyone, A s I have not been diagnosed, but have cleared up alot of these issues for me with some accupuncture really helped. I stopped now but, I'm doing ok, even though last week, I started the night peeing, and I find it increases with my period cycle and sometimes urgency and pressure are all tied in, when the uterus is thickning and putting pressure on the bladder. Every woman is so different, it's amazing but there is a common thread here of different ranges of symptoms I find. But in answer to the nervous about Ic , I experienced alot to the same stuff you were talking about. Just recently, but I feel Ic for me is mild if I have it compared to alot of others on this website, even though I justrecently had a flare up from some unfriendly foods to Ic people I ate over the holidays. Mine seems controlled with diet if I really watch it. and cleaning myself up and my husband before sex and after. to make sure you ddrink plenty of water before and after so you can avoid some infection. I hope you find out, I don't want to go back yet to the dr to ask him, I 've done alot of testing with my urologist a coupleof years ago. And I did not get this diagnoses, he prescribed a bladder relaxant for me. I've been puttingoff finding out for realjust because I don't want to go through all the test again, or have him say we checked all that,I hope you find your way and get a peace of mind. :grouphug:

[Silverfox]

I also agree this is a great discussion about what and when does one call it "pain". I have had IC type symptoms since when I was a baby, I have early memories of symptoms! You don't realize that you are different from other kids until your teacher notices that you have the need to go whole lot. My parents never noticed, but my teachers complained to them. I was made to feel bad and ashamed about it.

I guess as the years went along I was coming to some realization that I had a frequency and later a pain problem with my bladder. I had other pain problems and lived with the fear that I had MS. I knew people with MS disease and understood all the nerve damage and even bladder symptoms that go with it, sometimes. Okay, years later I was tested and MS was ruled out.

I did eventually learn what my disease was that caused my pain problem and it turned out that my Mother and two sisters have the same disease.

Sometime ago, I was reading on a pain site. At that site they explained that the symptom of having to pee all the time was not considered a normal sensation, and they explained that the abnormal feeling of needing to pee was considered a pain symptom. I think they meant it is a mild symptom of pain, but it is still considered pain, just very mild. That feeling of constant need to pee is pain!

I hope that others with this do not have an increase in pain as time and years pass like it did with me. At early childhood I was a # 2 in the pain graph, then by the time I was in high school I was a #4 and later at 21 I was a #5, and still later around the time of the birth of my 3rd child pain was a #7 or #8 and I was only 33 years old. During all those years It was at a time women were treated with great disdane, loathing and shame if you admitted to anyone that you had bladder discomfort or pain. You were made to feel bad if you compained to your gyno that you had menstrual pains, or heavy bleeding, and all the usual female problems.

I have been waiting a long long time to hold my head high without shame, and to have this very common problem revealed to the world. I have kept this secret so very long, I could just scream it out today from the top of the highest mountain. It's been my wish to somehowfearlessly come out of my bladder prison, and have no shame!!!

Please younger gals do stick together and make sure you let the world know about what a horrible disease this is for any who have it mildly or severely. I think this is big, but I do see so much strength in all of you who post on bladder pain. Please, do not hesitate, make the world listen and learn, and demand respect that this has needed all down through time.

So tired of hearing on the news daily complaints by those who have lesser problems. Together, you can make IC and bladder pains known and then that will speed up the help and the cure we have needed for so very long.

Thanks all

[PlainJane]

You mentioned a sore throat when the frequency started. Did you also notice a burning or stinging sensation in your eyes as well?

Erica

[Cheries]

Silverfox- What great post! I also feel a need to make this disease more public so we can get help!!! This has to be one of the most painful illnesses on the planet and we are still not getting the help we need because simply put, the organ effected is related to the 'elimination' system. How crazy is that??? I wish we could somehow get a campaign together and go public about this. Get the word out better.

[Silverfox]

Cheries, thanks for saying that. I agree that this is a secret because it's about "elimination". But I still think its amazing that other embarrassing diseases have earned great sympathy from the public. They hold all kinds of concerts and big time money raising events for those diseases, and there is lots of publicity and tv shows, and great dignity for the sick folks. There is no shame at all. Lots of stars come out to help. Ordinary people do walkathons....etc...

Yet, we go on living and politely apolygizing for being in so much pain and quietly taking ourselves to our homes and cry our hearts out alone, and quietly come here day after day whining, that no one understands or cares.

In some countries, women who have bladder problems have been know to be abandoned by family and friends and are left to beg on the streets for a living, and no one comes to their aid. Some just dissapear. I have read a sad story about this.

My own feelings are that we live in a great country that should not put us on ignore, for way too long. We did not cause this, and we are never infectious to others.

I think we have taught them how to treat us. (just my thoughts)

Thanks