Interstitial Cystitis

[EMC12491]

Hi, I am eighteen years old. I use to be bright, easy-going, carefree and the most happy girl you could ever meet, untill last year. Last year was the start of a very long chapter in my life, which is still on-going. I woke up one morning feeling fine, untill I went to school to use the restroom. The burning sensation I felt was not normal, but thinking it would pass I grabbed a bottle of water and decided to "clear my bladder". Not knowing that my symptoms would persist I did this routine for about two days before running to my parents for help. The first time I went to the doctor he said it was just a "urinary tract infection", and prescribed me 200mg of some antibiotic. I'm not going to lie, I took the medicine and it helped for about a month or two. When my symptoms reappeared not only was it worse but it was dehabilitating. I didn't want to go to school, I just wanted to stay in bed and cry untill the burning stopped. Sometimes If I took those red tabets to help the "burning" for UTI's my pain would subside, but I could always count on it to return. I have been to the doctor several times and they still tell me the same thing, "Emily, you have a UTI, take these antibiotics and if your symptoms return come back to see me in two weeks". I began to change into a girl that I couldn't recognize. I didn't want to go out with my friends, I didn't even want to talk to my boyfriend on the phone. All I wanted to do was cower into my room and fall asleep, when I am asleep I can't feel the pain. A week before Christmas this year I went back to the doctor. This time demanding they do something more for me. I threw a fit, honestly, and it worked. They reffered me to a Urologist Hoping for the best I went in only to find out that she also believes it is a UTI which I can tell you it is not. They have me do the same "crap" they made me do at the doctors. Pee into a cup and put a stick in it to find if there is any sign of infection. Every time they do this it comes back positive, so they send it off to culture. The culture always comes back negative. The "bacteria" won't grow...
The urologist even prescibed me FLOmax, and Detrol LA...like that would help? No it won't help because I do not have an "over-active bladder", I have some thing more than that. I believe I have IC
They expect me to pretend like I am not in pain. My teachers don't understand and every time I start to burn and try to sign my self out of school the nurse comes in and demands that I "stick it out". The principle always asks, "WHAT CAN I DO FOR YOU NOW, EMILY?!". It really hurts to know that no one understands the kind of pain I am in, just because I am not cut open and bleeding all over the floor, i'm not in pain and i'm "faking". Recently my mom was scouring over websites and happened to fall on to this one. She made me an account, I read the symptoms for IC and some of the stories and a bell rang in my head. It's nice to know that there are people out there who actually know what I am going through. I am eighteen years young, I shouldn't be going through this...The depression the pain, fighting the school because they don't "understand". I have lost all hope of being a "normal" teenager. I look up to the people who have been experiencing this for years. I have a long road ahead of me, and hopefully when I'm diagnosed for IC everything will fall into place; I can only pray.

[christina257]

Hi Emily,
I am so sorry to hear what you are going through.....and although I am not experiencing the physical suffering you are in, I too am freaking out, as my UI infections have become chronic, and I am on another round of antibiotics.
This has been going on for 5 years, and at one point the infection went into my kidneys, where I fear it may be now.....I sleep a lot too and fortunately, as I have just finished a work contract in Bermuda, I am able to rest and deal with this. No matter how much research I do, I am still looking for answers.
I do everything holistically possible, and am going to add a few more natural remedies to my already very healthy diet. I know how frustrated and scared you must be. Of course you are angry, but I believe and pray that you will get better.....I have seen an urologist too, and I was fine, except these infections (now antibiotic resistant), keep coming back!
It would be so much easier to have a broken leg.....but this is what we have, and to others we "look"healthy. The depression is a part of the frustration, for me it is about wondering when I will ever be "better" again! You are not alone with this, and I pray, that God will put other women in your life who can help you with their wisdom in this area.
Just don't give up....keep praying, and stay strong. Things will be so much better, when you get the right diagnosis, and the right treatment.

Suzanne

[sylvester1982]

Hey Emily,

My heart goes out to you - as I know exactly how you feel. I am a 27 year old female that began having UTI's when I was 15. Myn are related to sex mostly (stress too) so the doctors have me take 1 antibiotic after I have intercourse. I have battled them for so long and as of now I also have UTI symptoms but no actual infection at all (I don't think I have IC though)! This has ruled/interfered with my life terribly too. I can't tell you how many sleepless emotional nights this has caused me, not to mention the strain it takes on my relationship with my boyfriend. I have become resistant to most antibiotics now and turned to the herbal route.There are many different things that could be causing your problem but maybe a few things added to your knowledge base could help.

D-mannose is a great product you can buy from Amazon or like a Whole Foods that if taken every day and/or when you have an infection (in great amounts) can kill the UTI. Also, look into laxatives - I know that sounds funny but you could be constipated. Another thing that is not widely known is that an overabundance of yeast can actually cause a UTI. It's called Candida UTI - you can Google it for more information. I find that when I take Candida Clear vitamins it will help clear it up in a few days. Change your tampon EVERY time you have to pee - it could obstruct your voiding process giving you an infection. If you have ever injured your back (which you may or may not even know about) you could have damaged the nerves in your lower back which signal to your bladder when and how much to pee which if you don't go as much as you need to cause your nerves are shorted saying your done that could give you an infection.

Please just find out every time if you have an actual UTI (not just symptoms) before you take antibiotics because if you take them without an infection you can make yourself resistant to them, cause too much yeast in your body like me, and new research suggests that this may be a cause for the Intersitial Cystitis disease. The doctors will still throw antibiotics at you even if you do not have an infection simply because they do not know what else to do with you! You can buy at home test kits at Walgreens that tell you if you have a UTI or not.

The good news is we live in 2009 and back in the day if doctors/people could not find anything clinically wrong with you and you still complained of pain/discomfort they would just throw you in the nut house. That 's what they used to do with women who had IC. So even though we do not get as much sympathy as someone with an obvious injury like a broken arm, I guess it could be worse.
Please get this book: its called "You don't have to live with Cystitis". It covers UTI's and Interstitial Cystitis and I paid $4.50 for it used on Amazon. It is so so so helpful and where I learned most things that I know. Also, if you live close to a university try and find a urologist who is employed there, they do clinical trials and I believe have seen more things and have better intentions than a normal money hungry urologist. Hang in there and know that you are not alone, in actuality many people live with chronic conditions.

P.S. 1/4 teaspoon of baking soda in water to help ease your symptoms. No cranberry juice or vitamin C for IC - it will further irritate your bladder!

[nomoreuteyes]

Hi Emily,
I can completely relate to your story. I was a chronic sufferer of UTI's for 3 years and eventually was diagnosed with interstitial cystitis. I will save you the details of all the doctors, specialists, tests and medications I went through, but what I began doing was writing in a journal. I wanted to get to the bottom of what the underlying cause of this might be.
I do not know if this will help any UTI sufferer reading this post, but if I can help even one person stop the suffering, misery and pain it is worth writing. I hadn't had a UTI in 3 years. What I found to be the possible cause from my journal entries, was the kind of toilet paper I was using. I know it may sound unbelievable, but have you ever noticed with the softer toilet paper or just between different brands of toilet paper that there are particles that fly through the air as you tear it? When I saw that one day, it made me wonder if that was making me sick. If tampons can make you sick or even cause TSS, why couldn't certain toilet paper be harmful. Well, after trying different brands over a few months, sure enough, every time I used a toilet paper other than my life saving Quilted Northern, it would trigger a UTI.
Previously to my discovery, when I would go to the store I would always try different or softer brands just to "change it up", but come to find out later, Charmin was the worst for me. Ever since I stayed with Quilted Northern, I had not had a UTI since. Until tonight, which got me thinking, what have I changed over the last 3 years, I have been UTI free. I definitely have not changed brands of toilet paper at home. Then it hit me just a few minutes ago. They switched our toilet paper at work, and I bet that this triggered the UTI.
I am very aware of the imprint of toilet paper because of the suffering for so many years. I noticed there were lines imprinted on our toilet paper at work which we didn't have a few day ago, so I know they switched brands or types. I think even Quilted Northern has come out with a softer type, but I am not switching from the regular one I always use because it is not worth triggering a UTI.
I thought if this is happening to me, it has to be the cause to many other people that may get chronic UTI's. I know how terribly awful the pain is, and it is worse when people around you have never had one and they just don't understand. It is life altering when you chronically get them.
It may be worth starting a journal and even trying different toilet paper brands. Think of how often we use toilet paper, why couldn't it be the trigger? For being 3 years free of UTI's until tonight, it is worth pursuing for any UTI sufferer.
Since, I haven't been able to sleep all night due to the pain, I thought maybe I could find posts of other sufferers and tell my story and maybe it would help someone else.
If anyone reading this does get help from this post, I would love to hear from you.
NomoreUTeyes!

Pamala

[gravesd]

I my be able to help you. I went through pretty much the same thing that you have gone though.
I do have a medical background. I had bladder pain, freqrent urination, white blood cells and blood in my urine. My urine cultures were always negative.I saw a urologist did a cysto and it was negative.
He said to me"sorry I don't know what's wrong,but here is some detrol (for bladder spasms)".
I was so frustrated.
I went to this web site www.drmirkin.com and looked bladder infections ureaplasma and mycoplasma
in the search section.
There is a bacteria that can't be cultured by routine methods.This is a direct site to the info. http://www.drmirkin.com/women/8350.htmlmirkin. This bacteria cannot be killed my ciprofloxin,septa but this site will give you the info.
All I can suggest is to print the info and bring it to your doctor.If your doctor or urologist doesn't want to try the antibiotics find a doctor that will,either walk-in clinic or urgent care.
This is a urology journal.I couldn't put all the info on.
Objectives. To determine the incidence of Ureaplasma urealyticum in women experiencing chronic urinary symptoms and to determine whether antibiotic therapy targeting these organisms is effective.

Methods. Forty-eight consecutive women referred to our academic medical center for chronic voiding symptoms and possible interstitial cystitis underwent urologic evaluation, including culture screening for U. urealyticum and Mycoplasma hominis. Patients with positive cultures were treated with a 1-g dose of azithromycin; persistent infection was treated with 7 days of doxycycline, ofloxacin, or erythromycin. Patients reported symptom severity (0, mild; 3, severe) and voiding frequency before and 6 months after treatment.

Results. Positive cultures were obtained in 23 (48%) of 48 patients; 22 had U. urealyticum and 1 had M. hominis. All had negative cultures after treatment. The mean symptom severity score improved with treatment (2.2 to 0.7, P <0.001), and the mean urinary frequency decreased (9.2 daily to 6.8 daily, P <0.001). Two of the 23 patients experienced no improvement; one had detrusor instability and the other had medically related urinary frequency. Of the 25 patients with negative cultures, interstitial cystitis was established in only 9 (19% of the total sample).
Conclusions. Although often overlooked or improperly treated, U. urealyticum and M. hominis infections may account for a large proportion of unexplained chronic voiding symptoms. Culture and treatment should be considered before pursuing more costly and invasive tests.
I have been on 3 weeks of biaxin and presently I have few to no symptoms anymore.Just remember
if it is this bacteria it could take up to a month to cure yourself.You can also ask if your doctor could
specifically order cultures for these bacteria.
Good luck.

[angelhawk]

Dear Emily, I hope you are feeling better now? I have been in pain for about 3 months and I dont know how much more I can take. but it is very nice to have someone who knows what your talking about. I think other people think we are crazy. well we are NOT! this is very real. Please! if you ever need to talk . you have a friend here. if you get good help please! let me know I am looking fo any advice I can get. take care and hang in there hon. Patti