New here, possible IC, possible insanity

[jbean24]

Hi everyone!
So I've been on this website for about 2 months now. Like probably many of you that found it, I've been searching this forum for any signs that I might possibly have IC along with any hope that I don't. Here is my story:

I'm a 28 year old female. I work at a pretty high stress full time job. One morning in October 2010, I woke up with what felt a little like a UTI. I have had 2 UTI's before that presented themselves with the classic burning sensation and need to go constantly. This felt a little different. I didn't have that burning sensation. Just a feeling like I had to go ALL OF THE TIME. I chalked it up to stress, drank a lot of water and cranberry juice and sure enough, after 2 days, my symptoms were gone and I felt fine. I figured I had a little infection that got flushed out.

Then on Thanksgiving of 2010, I woke up in the middle of the night with the most excruciating pains in my bladder. I had a sharp, stabbing urgent need to pee that didn't go away. I thought that maybe since it went away on it's own last time, that if I drank enough water that it would go away on it's own this time. After spending Thanksgiving in complete misery and pain, going to the bathroom every 20 minutes and not sleeping, I decided that something had to have been wrong.

The next day I went to a walk-in clinic (my doctor was not available because it was a holiday). They found white blood cells in my urine and sent me home with Cipro. I thought, "Great! Maybe it is just a UTI."

After 2 days on the Cipro, I didn't feel any better. I was up all night one night and that's when I started doing what most irrational people start doing: obsessively looking up my symptoms on the internet. That's when I learned about IC. And that's also when I started becoming totally freaked out and paranoid.

That morning I went straight to the ER. I described my symptoms as thoroughly as I could. They found white blood cells in my urine and sent me home with Bactrim. I said, "But the burning! There's no burning when I pee! That's not normal for a UTI!" They shrugged and said, all bacteria is different.

Frustrated and still feeling awful, I went home and took the Bactrim. After 5 days of that need to urinate all of the time, nausea, lack of appetite and sleep, I actually started to feel better.

Great in fact. I felt better than I did before this happened. I thought "Oh my God, I guess it was just a UTI and I'm not crazy." I thought of all of the IC stories I read and how I would never have to think about that again. I even donated money to an IC organization figuring my altruism would boost my morale even more.

Then two weeks later, BAM. I woke up with that need to pee all of the time feeling again. This time, not nearly as bad as before, but it was enough to worry me.

That's when I made an appointment with a urologist. They did a urine culture and sent me home with Macrobid just in case. A few days later I called for the results of the urine culture and it was negative. NO BACTERIA. NO INFECTION. NOTHING.

I stopped taking the Macrobid, as that was only making me nauseous with no appetite anyway.

Totally confused and now more panicky than ever, I went to my general practitioner for a pelvic exam. I figured I would rule out anything there. My PAP was completely normal and I was just given treatment for a yeast infection. I thought that that was a little strange because I didn't have any itching as I have had in the past with a yeast infection. I took the four rounds of Diflucan anyway and I actually started to feel better.

My frequent need to use the bathroom at this point was diminishing. I was now only going about 10 times a day and once at night. This was pretty normal for me throughout my adult life. I thought, "Maybe it was just yeast after all that was somehow irritating my bladder."

I felt pretty good for the next couple of weeks. But not totally fine. There was still something wrong.

Since then, every time my bladder fills I feel a strange pressure or pain pushing down on my urethra. Here are my other symptoms:

• Retention: About 3 times I've had trouble fully emptying my bladder first thing in the morning. Sometimes it takes 3 sittings to get all of the urine out.
• Dull throbbing
• An occasional tingling feeling in my vaginal opening
• Blod clots in my urine
• An occasional sharp pain that shoots up into my bladder

I know that these things are not normal. I know there is still something wrong. Sometimes I think it's IC. Sometimes I think it's MS. Sometimes I think it's cancer. Sometimes I think I've just gone crazy and that this is all in my head and I'm dreaming.

My doctor has agreed to find my a good female urologist this week. He said they'll probably do a cystoscopy which I'm nervous about because I've hear horror stories.

At this point, I'm less concerned about what it is and more concerned with HEALING. I just want to be better. I just want to be normal again.

I know in my heart that I will heal from this, whatever it is. Even when I'm feeling my worst, I feel like this will end. Sometime, someday. It has to. It has to for me, and it has to for everyone else that may be going through this. It's just a matter of time.

So that's my story. If you're still reading this, thank you! It helps to know that someone is listening.

[bubbe1]

new and going crazy

Hi everyone!
So I've been on this website for about 2 months now. Like probably many of you that found it, I've been searching this forum for any signs that I might possibly have IC along with any hope that I don't. Here is my story:

I'm a 28 year old female. I work at a pretty high stress full time job. One morning in October 2010, I woke up with what felt a little like a UTI. I have had 2 UTI's before that presented themselves with the classic burning sensation and need to go constantly. This felt a little different. I didn't have that burning sensation. Just a feeling like I had to go ALL OF THE TIME. I chalked it up to stress, drank a lot of water and cranberry juice and sure enough, after 2 days, my symptoms were gone and I felt fine. I figured I had a little infection that got flushed out.

Then on Thanksgiving of 2010, I woke up in the middle of the night with the most excruciating pains in my bladder. I had a sharp, stabbing urgent need to pee that didn't go away. I thought that maybe since it went away on it's own last time, that if I drank enough water that it would go away on it's own this time. After spending Thanksgiving in complete misery and pain, going to the bathroom every 20 minutes and not sleeping, I decided that something had to have been wrong.

The next day I went to a walk-in clinic (my doctor was not available because it was a holiday). They found white blood cells in my urine and sent me home with Cipro. I thought, "Great! Maybe it is just a UTI."

After 2 days on the Cipro, I didn't feel any better. I was up all night one night and that's when I started doing what most irrational people start doing: obsessively looking up my symptoms on the internet. That's when I learned about IC. And that's also when I started becoming totally freaked out and paranoid.

That morning I went straight to the ER. I described my symptoms as thoroughly as I could. They found white blood cells in my urine and sent me home with Bactrim. I said, "But the burning! There's no burning when I pee! That's not normal for a UTI!" They shrugged and said, all bacteria is different.

Frustrated and still feeling awful, I went home and took the Bactrim. After 5 days of that need to urinate all of the time, nausea, lack of appetite and sleep, I actually started to feel better.

Great in fact. I felt better than I did before this happened. I thought "Oh my God, I guess it was just a UTI and I'm not crazy." I thought of all of the IC stories I read and how I would never have to think about that again. I even donated money to an IC organization figuring my altruism would boost my morale even more.

Then two weeks later, BAM. I woke up with that need to pee all of the time feeling again. This time, not nearly as bad as before, but it was enough to worry me.

That's when I made an appointment with a urologist. They did a urine culture and sent me home with Macrobid just in case. A few days later I called for the results of the urine culture and it was negative. NO BACTERIA. NO INFECTION. NOTHING.

I stopped taking the Macrobid, as that was only making me nauseous with no appetite anyway.

Totally confused and now more panicky than ever, I went to my general practitioner for a pelvic exam. I figured I would rule out anything there. My PAP was completely normal and I was just given treatment for a yeast infection. I thought that that was a little strange because I didn't have any itching as I have had in the past with a yeast infection. I took the four rounds of Diflucan anyway and I actually started to feel better.

My frequent need to use the bathroom at this point was diminishing. I was now only going about 10 times a day and once at night. This was pretty normal for me throughout my adult life. I thought, "Maybe it was just yeast after all that was somehow irritating my bladder."

I felt pretty good for the next couple of weeks. But not totally fine. There was still something wrong.

Since then, every time my bladder fills I feel a strange pressure or pain pushing down on my urethra. Here are my other symptoms:

• Retention: About 3 times I've had trouble fully emptying my bladder first thing in the morning. Sometimes it takes 3 sittings to get all of the urine out.
• Dull throbbing
• An occasional tingling feeling in my vaginal opening
• Blod clots in my urine
• An occasional sharp pain that shoots up into my bladder

I know that these things are not normal. I know there is still something wrong. Sometimes I think it's IC. Sometimes I think it's MS. Sometimes I think it's cancer. Sometimes I think I've just gone crazy and that this is all in my head and I'm dreaming.

My doctor has agreed to find my a good female urologist this week. He said they'll probably do a cystoscopy which I'm nervous about because I've hear horror stories.

At this point, I'm less concerned about what it is and more concerned with HEALING. I just want to be better. I just want to be normal again.

I know in my heart that I will heal from this, whatever it is. Even when I'm feeling my worst, I feel like this will end. Sometime, someday. It has to. It has to for me, and it has to for everyone else that may be going through this. It's just a matter of time.

So that's my story. If you're still reading this, thank you! It helps to know that someone is listening.

Hi
First, I'm sorry you have to be here, but I'm glad you found us.
Second, you are NOT crazy. You're going through what so many of us have gone through in the course of trying to make sense of our divergent symptoms.
I might not be the best person to give advice since, relatively speaking, I'm a newbie. However, I think it's good that you're going to see another doc and have a cystoscopy. Scary though it might be, and really, mine was not so bad, just more sore for a few days and then back to "normal", at least you'll know what you're dealing with and can start to work towards feeling better.
In the meantime, you might want to try the diet, listed below in the drop down menu. I found it to be very helpful in soothing my symptoms. Stick to the "safe" foods and try keeping a food diary to see if you can tell if there are some foods that are causing your sypmtoms to flare.
I also find heat, baking soda, and relaxation to be helpful. Only use baking soda if you don't have high blood pressure issues.
I hope this helps a little. I'm sure you'll get lots of other responses.
Keep us up to date.
Hugs,
Laurie

[cmclien]

Hi and Welcome!
Try and not freak out though I know its hard. Remember that on these sites generally people who are symptomatic or having a real hard time post much more then people who have found medicinal "cures" or a lessening of symptoms don't post because they are out living their lives!
I know just how you feel and am glad you are going to see a urologist. Sometimes they first will do a "regular" in office cystoscopy to rule out other types of bladder conditions. I had one done a few weeks ago and my experience was uneventful I'm happy to say. It took 10 minutes filling my bladder with sterile water and the doc using a scope and looking at the bladder wall etc which was kinda cool to watch on the screen. Then they emptied my bladder to see if there was blood in it and re-filled it again with sterile water and then I was able to pee it out and I was done.
Whenever I have white blood cells in my urine I feel just the same as you did though my urologist says they're not significant. I guess its not a true infection without the red blood cells but maybe the beginnings of an infection so their is probably inflammation, thus the wbc.
Sometimes they will start you on meds to see how you are doing before considering doing the cystoscopy with hydro distention which is done under anesthesia at the hospital. Lots of people with milder forms of the disease lead mostly normal lives following the diet etc. The disease generally does not progress to a worse state and meds help lots of people. I have had this for 20 years and it has not really changed much. I go through periods where its really bad and others where I hardly think about it though I am never sure what starts it again.
I hope this makes you feel a little better.
Also, because you already were going 10 times a day to start out with which my urogynecologist has told me is not normal you may have already had overactive bladder which is associated with less or no pain.

[Julie B]

Hi there! Your story is OH so familiar to many of us. I hope you can find a way to figure out what is wrong. Then you can concentrate on finding ways to get better!

One thing to keep in mind is that it can be scary to read some of the stories on here, but try not to dwell on that. If you think about it, many of these posts are from people who are new, just like you, or from those who have experienced a recurrence of their symptoms, so the stories are skewed a bit toward those that are the most sick.

For everyone of those people, there are THOUSANDS of people who have gotten better, and they just don't post any more because, well, they have their lives back! :-)

So even if you have IC, there IS hope, and most of us do get better.

Can I ask, have you noticed any frequency with certain foods or from intercourse? Those things will be very important to report to the doctor when you see him/her.

Sending you understanding hugs!!!!

Julie B

[Maia]

JBean,

I am sort of in the same boat as you right now. I haven't seen a urologist yet (I will next Friday), but they told me it might be a UTI at first, but there wasn't much to fully diagnose me with a UTI and the Bactrim did not help.

Like you, it is normal for me to urinate at least 10-15 times a day. I did not get the burning sensation, either... just that pressure to urinate frequently.

I wish I knew the answers. It definitely sounds like you need to get a second opinion. And blood in urine is never normal, so I think that is something they need to look at.

Good luck. I have been driving myself slightly crazy, reading up on all this stuff on this website as well. I almost wonder if I need to step away from it until I get some answers! Not to mention the worry (because I am neurotic like this) that I will read about the symptoms of IC and somehow create it as some sort of self-fulfilling prophesy.

Take Care,
Maia

[VickiB]

to the ICN Jbean!

I think that this point you're at where you know something's wrong but don't know what, is the worst part of the journey! It does sound like you're moving forward in the right direction and hopefully that will bring you some answers soon.

You'd mentioned that you expect a cystoscopy when you see the urologist and you're worried because of the horror stories. I think that's natural. I was worried when they did mine too, but it was nowhere as bad as I'd feared. After I'd already had mine I read here that it's much easier if you relax. I was far from relaxed, -pretty much fought that thing's entire trip in, but even then it still wasn't that terrible!

I hope all goes well at your uro appointment!
Vicki

[KarenAnne]

jbean: You really need to see a urologist that is familiar with female urology problems. This website has an excellent physician finder. The ICA is also a good source to find a specialist in your area. You need to get a proper diagnosis. IC is a diagnosis of exclusion. There are other medical conditions that cause the same symptoms.

While you are waiting to see the new dr., you can start the IC diet. It won't hurt you if you don't have IC, but it will help you if it turns out you do. Cut out the big offenders especially: coffee, chocolate, anything tomato, alcohol, chemical additives, acidic food & drink like cranberry juice & most fruits. Drink spring water only & keep well hydrated. This way if it turns out you do have IC, you'll be ahead of the game. If it is not IC, then you were at least easy on your bladder. Feel better soon!!

[jbean24]

Just had a cystoscopy

Hey Everyone-
So I wanted to give you an update on my situation. I just had an in-office cystoscopy done yesterday. The urologist said my bladder looks normal, but because there is both microscopic blood and blood clots in my urine that I need a CT scan to rule out kidney stones.

I've had a kidney stone before and I certainly remember what that feels like. I currently don't have any kidney symptoms so I'm doubtful I have any stones but also hopeful that I do (and it's not IC!)

I've definitely been more irritated since the procedure. I didn't really have much frequency before and only a little throbbing pain, but now I feel worse! I hope this goes away soon.

I've been eating a more bland diet and avoiding alcohol, caffeine, chocolate, tomatoes and orange juice. Although, I don't think food effects my symptoms at all.

Sex doesn't bother me (but I haven't had sex in over a month). I've been avoiding it just in case.

Anyway, just an update! Again, thanks for listening.

[cmclien]

After my cystoscopy I felt a litte irritated too. Drink LOTS of water for a couple of days and take an azo tablet, anesthetic for your bladder that you can buy otc. Did your doctor give you a macrobid for afterwards? Hopefully they did to prevent a uti from the procedure. Mine usually gives me one anytime they use a catheter no matter what they're doing.

[Julie B]

Well, one step in the process down. Hang in there.

Just a question....what happens when you drink cranberry juice? If you get worse, that may be another sign that you might have Ic.

[Linda May]

Ic

You need to go back to your uro and have a hydro cysto done they put you under and a camera is inserted into the bladder and they fill your bladder up to stretch it i guess.

This is the only way to rule out IC for good.

Having just the cyst done in the office will not rule out IC.

Donna can tell you that, I pray you do not have IC but, your uro should have known to do both them precedures.

Also you should stick with the IC diet to the letter until you know for sure if you have IC.

I here this all the time about newbies having the one precedure done in the office.

I just do not understand why the uros waste time and money and don't do the correct precedure to rule out IC.

The quicker you know the faster you can get on a treatment plan.

Insist to your uro for a hydro-cysto precedure.

This pain you are having is not in your head, I to was having alot of utis before being diagnosed with IC.

And once I found the right uro he got me on the right treatment plan and my pain is 99% better.

I do worry sometimes that it will quit working but, if it doe's I am sure we will find another treatment plan.

I hope and pray you do not have IC but, if you do it is best to catch it early.

It's possible you could have a mild case, take care and I will pray for you.

[sailawaygrl]

For Linda May,
We don't always have to have a cysto with hydrostention to diagnose IC, some Dr's will diagnose based on symptoms and others will diagnose based on the results of the pottasium sensitivity test. There really is no absolute test for IC, some people's bladders will look ok with a hydrostention yet they still have IC. Usually having a cysto done in the office is part of the process of ruling out other problems that might be occuring. A diagnosis of IC is a process of elimination, so there are quite a few tests that are usually done prior to diagnosing IC. Most Drs and patients prefer to take a less invasive approach to finding the cause of our symptoms. Anesthesia and a sugical procedure is not something anyone wants to jump into quickly. So, it really isn't a waste of time and money as there are other conditions that could cause our symptoms. I hope this helps a little. It is frustrating that it takes a while to get an IC diagnosis but it is better to be sure that it is an accurate diagnosis and that every other possibility has been ruled out.

Take care,
Sandra

[flowerangela]

jbean i can so relate to your original post.i too am a newbie and this condition is so frustrating.the pain is so bad even with the pain meds i want to break down and cry.im having alot of pain since my hospital cysto..going to get bladder treatments friday.. hoping they will help. i want to be normal again too

[bjcov]

I am one of those that doesn't post when I feel good, I only post when I feel bad. I just got out of a flair but I'm determined to stay on here to encourage others. I've been dealing with IC for 10 yrs and most of that time I feel ok. I always have to pee but its doesn't rule my life. Good luck!

[allisun13]

Hey Jbean!

Wow! This is so much like what I've been through the past few months or so. I too have struggled the most with the urgency part of this. I've tried Toviaz, Oxybutine, Enablex & Vesicare - none of them touched it. After too being referred to a urologist I found out that I do have kidney stones. (a CT scan was done) After a 24 hour urine tests and the in office ph tests it was determined that my urine was slightly more acidic than what it needs to be. It ranged from a 5.5 to a 6.00 during my office visits and was a 6.2 with the 24 hour urine test. If it weren't for trying to assess how to deal w/ my stones I don't think my urologist would've suggested trying this but he put me on Potassium Citrate. I went out prior to taking it and bought urine ph indicator strips - (litmus paper). I only have to take two potassium pills a day to keep my urine at a 7.0. My symptoms have definitley gotten better - the urgency has gotten significantly better since my urine has been stablized at a 7.0. In the beginning when trying to figure out what dose was right for me it got to an 8.0 and I was miserable. The Potassium is hopefully going to disolve the stones which he thinks are likely uric acid stones then I will likely stay on the Potassium for a while (he said forever) but now that I know to test my urine I will likely stop taking it and try including potassium into my diet for a while to see if I can keep my urine at a healthy level that way.

I don't know if you've had the acidity of your urine checked but if not I'd highly recommend asking your urologist if they checked it. My experience is my syptoms are okay in the 6.5 to 7.0 range but once it goes above or below that the urgency is back full on.

By the way - while on the Potassium I am able to drink a cup of coffee in the morning and I ate lasagna the other night for the first time in a while - tomato based foods were off limits for me for a while there.

I hope you get some relief fast! Hang in there and don't give up! I felt so hopeless in my struggle in trying to figure this out. Please keep us updated if you can!