I'm in a flare

[carole]

Nice it's 3:53am and I've been in and out of bed for hours doing bathroom runs. My bladder has been good for months and now I am soooooo uncomfortable. I know it is something I ate. I bought a white sauce from the grocery store yesterday and thought I would be ok with it but I guess not. I've tried the baking soda and I have been drinking a ton of water hence why I've also been doing extra bathroom runs. My bladder is on fire and I hate that horrible feeling you get in your bladder after you pee I hope this passes really quickly because I am in agony! This disease is so exhausting at times. Peeing is such a natural thing so why does it have to be such a horrible thing for us. Boy no food is worth this discomfort!!!!
All I can say is I lay it at the foot of the cross and pray for healing!

**Found my answer in the last bathroom run. Blood in the urine so it's an infection. I just had my bladder scoped last month so I know everything looks good in there. I'll go to the clinic when it opens today. The good news is I guess that the medication usually works pretty fast...I hope!!**

[ICPrincess]

I just went through this yesterday and am very frustrated. I swear I seem to have radar for infections because I had a feeling it was not a regular flare. I just ended a very heavy period and forgot to take my preventative dose of Cipro. I was fine the day before, but yesterday I began to get that awful feeling where you want to jump out of your skin. I can almost always tell now when its an infection because it has a very distinct sensation to it. Sure enough I did a test strip last night and I have another darn UTI! Mine are almost never Nitrate based (mine are from blood in the urine).

I AM SO SICK OF THEM! I get one every time my period ends!

I took my first Cipro late last night. I don't know what else to do. I change my pads frequently and shower daily (and even more during my period). I can't use tampons because those are excruciating for me. I have noticed more and more women talking about getting UTI's when their period ends, so it seems to be a problem for women in general (not just ICers).

P.S. I can really tell when I feel like I have to pee literally every ten minutes. That's almost always a sign and sure enough I find an infection. I hope you feel better soon! It sucks.

[snowgirl]

question for you two - do you both hold down jobs while in these flares.
I feel for you. I had to resign 2 yrs ago after 23 yrs of IC
I could not give my employer consistent employment.
I needed part time desk job- employer unwiling to work with me- they say once you are done working you are done= no back to work program
Vicky

[ICPrincess]

I had to stop working in 2005 due to this, I won my disability case in 2006. It is a very debiltating illness. There is no way someone can work when they are in a constant state of extreme pain and feeling as if they have a urinary tract infection even when they don't. Most people go crying into emergency rooms when they get a bad UTI. We are supposed to still work through having that feeling every day of our lives and its insanity. I stopped the insanity and filed in 2005 and won my case in 2006. Its not easy but it can be done.

[carole]

Yes I do work full-time but I didn't go in today. Some days are hard to work but generally I do ok. I have only missed 1 days work this year IC related maybe two if I don't go in tomorrow.My symptoms are manageable. I do of course want to point out they I have been diagnosed with Painful Bladder Syndrome and not IC. Doctor's say it may or may not go away. I have to do what everybody else has to do diet wise and I am on medication. I get flares like everybody else and have daily symptoms like everybody else(pain,burning,urgency). I just don't have the frequency that all of you have(unless I eat something I'm not suppose to) which I know is a big part of IC. I wish of course I was rich and didn't have to work and I could live in Hawaii. I think my symptoms would be more manageable in Hawaii..LOL

[carole]

ICPrincess. I noticed you said that your UTI's are not Nitrate based. They told me today that my urine was Nitrate negative and they needed to culture it because of the blood they could not test for the other(whatever that is). I just have a question for you. Do you have alot of blood in your urine or just a little. I have not had a UTI in about 20 years but I don't remember there being this much blood. It was strange. I flared thought I ate something wrong then I began to drink lots of water to flush it out and that's when the blood started. It only lasted about 3 hours and now no blood but still very tender and sore. It still feels like I'm peeing razor blades but not as bad. They gave me Cipro. It just really scared me to see the blood. I didn't know what was going on.

[ICPrincess]

I know its scary when you see blood. Thats why I had to do another Hydro in August. Because I was suddenly getting so many UTI's and seeing blood (they did confirm that there was deifinitely blood in my urine). It scared me too. So much so that I put myself through another procedure that I swore I would never do again just to make sure it was not something more serious.

It turned out to be nothing new really. Just a badly diseased bladder with scarring and bleeding. I think if your bladder is in the type of conditon mine is in, when we get an infection or something that attacks it, it bleeds. It also leaves us much more vulnerable to infection.

Mine are never nitrate based and always white cell based (blood). I don't culture it every time anymore because I've gotten used to the drill by now and don't want to have to see my doctor every month or two. I could not get rid of it with Keflex or Augmentin. Neither touched it even though the culture said that both would be effective against the strain that I had (I am allergic to Sulfa and its relatives which includes Macrobid). I ended up having to use Cipro in both situations and now I just do Cipro only (it kills everything even Anthrax). My doctor gives me extra to keep on hand. I just don't want to mess around with it anymore and be taking all these other antibiotics when they didn't work for me and left me even more vulnerable. They have done many studies where one single dose of Cipro outperformed a whole course of several other antibiotics, so I don't take much (1-3 500 mg doses spread out over a few days). Just enough to kill it since I know it will be back after my period again anyway (I have done an experiment where I test my urine each week after the Cipro got rid of the blood and infection and each week it stays clear until after my period). That's the trigger for me.

I know that some have been told that they did not have an infection, just blood in their urine, and yet they remained in pain for a long time. If that were true for me, then the Cipro would not get rid of the blood from my urine as it always has for me (every time I do a test strip after using Cipro, the blood is gone) and it makes me feel a whole heck of a lot better too. I have not had mine cultured the last two times, but did have it cultured quite a few times prior when I saw only white blood cells and in my instance, it was indeed an infection each time. Now I just assume as much because it s not worth the hassle and Cipro gets rid of it for me. I use the AZO home test strips as they are what doctors use and the most reliable. I always have a supply (that and small plastic dosing cups that you can get from any medical supply to collect your urine in). It will tell you if you have blood in your urine and a possible infection even though your nitrates are clear (it tests both).

When our weakened bladders are under attack by either a food we ate that seeped in like battery acid or an infection, our bladders bleed because our protective linings are deteriorating. That's why when they go in and do a hydro, they will often see our bladders bleeding (in my case they did each time). I just never had it to where I noticed it before, so it freaked me out like it did you. I have a feeling the Cipro will make you feel much better soon. I will cross my fingers for you. It sucks I know.

[carole]

I am feeling alot better today. At least when I pee it doesn't feel like I'm peeing razor blades. No blood showing today either. I am taking the Cipro and thank goodness it is working. That makes total sense what you say ICPrincess that our bladder would bleed when exposed to something it doesn't like because it is already sensitive. You have been a big help and I just wanted to let you know I appreciate it:-)

[Mothergoose]

Is PBS not the same thing as IC I thought the namens were interchangeable?

[carole]

Originally Posted by Mothergoose

Is PBS not the same thing as IC I thought the namens were interchangeable?

According to my Urologist she said it's not Intestitial Cystitis but PBS. I was a little confused on that too. I did however get a second opinion and the second Urologist said also that is was not Interstitial Cystitis but an inflammation of the bladder with no know cause and that is may or may not go away.

[Mothergoose]

Hi Carole

Cystitis is not the same as IC/PBS. I don't mean to be picky but I believe IC and PBS to be the same thing, and to say you have PBS and not IC is only fooling yourself, it is just a play on words. Many people including me try to fool ourselves into thinking we don't have IC after diagnoses because it seems so much to take in and there is no cure so there dosen't seem to be much hope. My expirence is the sooner you accept it is IC/PBS the sooner you can get back on track with your life and start living a life with some quaility to it.

My first Dr. who said I probably have IC said there is a diet and that sort of thing you can try but it might not be IC so maybe you don't want to do that, I grab onto the idea that I may not infact have IC and made decissions based on that. Once I enbraced the idea it was IC I realized I could have prevented alot of years of needless suffering. It was not until a uro said you need to face up to the fact that you have IC and need to live like a person with it and take care of your health and quite ignoring it, well I walked out of his office half mad and half relieved, you see it is 2 sided once it was said for sure I had IC I could not ignore it anymore and needed to follow the diet, but it also made it possible for Dr. to feel I also needed to be treated for it.

I believe this is what your Dr. told you but I believe they are telling you it is not an infection that can be cure with ab's which is true, but it is IC?PBS which goes by both names.

I am truely not saying these things to you to be mean in any way I would just like to help prevent you from going through what I went through, and maybe it is not my place to say. Please research this some for yourself, remember not all IC people have the same symptoms and may not have all of the symptoms. Below is wikki's defination of both cystitis and IC/PBS to get you started.

MG

There are several types of cystitis:

Traumatic cystitis is probably the most common form of cystitis in the female, and is due to bruising of the bladder, usually by sexual intercourse. This is often followed by bacterial cystitis, frequently by coliform bacteria being transferred from the bowel through the urethra into the bladder.
interstitial cystitis (IC) is considered more of an injury to the bladder resulting in constant irritation and rarely involves the presence of infection. IC patients are often misdiagnosed with UTI/cystitis for years before they are told that their urine cultures are negative. Antibiotics are not used in the treatment of IC. The cause of IC is unknown, though some suspect it may be autoimmune where the immune system attacks the bladder. Several therapies are now available.
eosinophilic cystitis is a rare form of cystitis that is diagnosed via biopsy. In these cases, the bladder wall is infiltrated with a high number of eosinophils. The cause of EC is also unknown though it has been triggered in children by certain medications. Some consider it a form of interstitial cystitis.
radiation cystitis often occurs in patients undergoing radiation therapy for the treatment of cancer


Interstitial cystitis/painful bladder syndrome (commonly abbreviated to "IC/PBS"), is a urinary bladder disease of unknown cause characterised by pain associated with urination (dysuria), urinary frequency (as often as every 10 minutes), urgency, and pressure in the bladder and/or pelvis.[1] Pain that worsened with a certain food or drink and/or worsened with bladder filling and/or improved with urination was reported by 97% of patients.[2] Patients may also experience nocturia, pelvic floor dysfunction and tension (thus making it difficult to start their urine stream), pain with sexual intercourse, and discomfort and difficulty driving, traveling or working. Research has claimed that the quality of life of some IC patients is equivalent to those with end stage renal failure.[3]

It is not unusual for patients to have been misdiagnosed with a variety of other conditions, including: overactive bladder, urethritis, urethral syndrome, trigonitis, prostatitis and other generic terms used to describe frequency/urgency symptoms in the urinary tract.

IC/PBS affects men and women of all cultures, socioeconomic backgrounds, and ages. Although the disease previously was believed to be a condition of menopausal women, growing numbers of men and women are being diagnosed in their twenties and younger. IC/PBS is not a rare condition, however IC/PBS is more common in females than in men.[1] Early research suggested that IC/PBS prevalence ranged from 1 in 100,000 to 5.1 in 1,000 of the general population. Up to 12% of women may have early symptoms of IC/PBS

[carole]

Mothergoose I have to say you freaked me out a little. First are you telling me that if I have sex with my BF that it will make my symptoms worse. I am usually careful when we have sex and I make sure I feel little or no pain. Second I have been living like I have IC that is following the diet and I am on Enablex. This seems to manage my symptoms well except for this last week where I had a flare(as stated above). My bf and I had sex on Saturday and on Monday was when I flared could that have had anything to do with it? I did not feel any pain during sex. I am confused and by your statement now I am afraid to have sex. I am waiting for the doctors to call me today and let me know if the urine culture showed an infection or not. I wanted to say two Urologist told me it was not IC but just an inflamation of the bladder of unknown cause(which may or may not go away). Again I've been following the diet because it has helped me tremendously and at this point I feel that's all I can do. I know you were just trying to help but I'm a little freaked out now!

[Mothergoose]

Not ment to freak you out.

I didn't say anything about sex, it does cause alot of people with ic to flare or have pain afterwards for hours up to days, but it is quite possiable for people with IC to have sex with no pain. That is part of my point I went through years of needless pain with everything I did including sex because I lived in denial about IC and Dr. didn't brust my bubble about thinking it wasn't IC it was just some passing bladder thing.

This discussion started with your statement: I have been diagnosed with Painful Bladder Syndrome and not IC. My point is I think they are one in the same. I am going to go to another post and ask if this is wqaht others have been told then if I am wrong I will know too.

Sorry if I freaked you out. MG

[carole]

MG I was referring to the sex comment in the outline of different types of IC.
Traumatic cystitis is probably the most common form of cystitis in the female, and is due to bruising of the bladder, usually by sexual intercourse. This is often followed by bacterial cystitis, frequently by coliform bacteria being transferred from the bowel through the urethra into the bladder
This is the comment that concerned me. I appreciate the fact that you were looking out for me and not living in denial. I have accepted that this may be IC and that it may never go away and I am actually doing ok with that. Eventhough the doctors are telling me different I am not going to fool myself because I have read what many of you have gone through. This is a big reason why whithout any urging from the doctors intially I had already been on this site and started the diet right away which is why I think my symptoms have been manageable. What did concern me in the above statement is that am I going to have to worry everytime I have sex with my boyfriend that I will get a flare and/or have bleeding? That's what freaked me out. I will read about Sex and IC on this site to get more info. Thanks for looking out for me:-)

[Mothergoose]

I sorry I just used thoughs as examples of place to start to research IC verses PBS.

If you have been having sex with no problems then there is no reason to think it all of a sudden will become a problem.

As with everything else you have to take what you read on the web with a grain of salt no matter where it is from, people can pretty much post anything they want on it. Sorry again did not mean to freak you out.

MG