i dont know what to think

a couple of weeks ago i went to the doctor because ive had 6 months of UTI type symptoms (frequent, painful urinations, usuaully only amounting to a few drops of urine) , intense lower abdominal pain and bloody urinations... and lately, ive been experiencing some harsh pain sometimes during but mostly after sex... my doctor says he isnt sure if its IC, and since im so young (im only 18) he's unwilling to start treating me for it... so instead hes been putting me on intense antibiotics that have been making me feel even worse, and i dont know what to do. the symptoms come and go, i can go a week feeling just fine and then all of a sudden ill start feeling bad again... i CANT keep taking these antibiotics, but i dont know what else to do...
HELLLLLLLLLLLLPPPPPPPPPP!
<3
samantha

I have had to take long term antibiotics for constant UTI's.
Look on here for the diet for I.C. as that will help you alot too.
Also there are test for I.C. as I had it and others have to. I had a cystoscopy that diagnosed mine for sure. You may want to consider changing doctors if the doctor won't help you to the degree you want. Your age has nothing to do with being diagnosed as even children are being diagnosed with I.C. Also your not too young for Elmiron. So maybe changing doctors and finding one that is willing to help you out is an option for you. Like I said there is a diet for I.C., and the drug Elmiron for I.C. and many experience pain during sex as well. I think there is a section here for that too. As many try extra lubrication for sex. Many will take hot baths afterwards, take pain meds before, and so many things. I am sure this is very overwhelming to you. I was overwhelmed and then each time I am diagnosed with a new illness I still feel the same way.
There are plenty on here that will help you out. Just remember your not alone and there is hope.
Shar

Samantha,
There are so many things that effect I.C., that I know I cannot mention them all.
Even your periods will and changes in your hormones.
What you eat as I mentioned.
Stress will for sure.
What you drink too.
Other illnesses if you have any can as well.
I know many burn after urination. I was told to keep a spray bottle handy in the bathroom and spray yourself with clean water to help with that. And it does.
I have passed blood before and even pieces of my bladder before because I have the Hunner Ulcers.
Those were all diagnosed during my cystoscopy.
A procedure where they looked inside of my bladder.
Shar

I suggest seeing a different doctor. My symptoms started at age 13 and I went 10 years without the correct diagnosis. There are many people who had symptoms at your age but the struggle to get the correct diagnosis can be a huge problem.
In the mean time there are many things you can do on your own, IC diet, some alternatives, avoiding triggers, and so much more. The little things we do add up.

http://icandme.9.forumer.com/index.php?showtopic=12 diagnosis struggles

http://icandme.9.forumer.com/index.php?showtopic=22 flare triggers
http://icandme.9.forumer.com/index.php?act=ST&f=19&t=217 newbie kit

http://icandme.9.forumer.com/index.php?showtopic=4 herbal start with IC

http://icandme.9.forumer.com/index.php?showtopic=152 pain helps
http://www.pelvicpain.org/providers/find_provider.aspx finding a doc


It sounds to me like you could have some pelvic floor dyfunction....also with antibiotics making you worse...it is burning with urination that is getting worse or all symptoms? Maybe you need a probiotic while on an antibiotic.

Don't hesitate to email me for help carmelann@charter.net

I hope you feel better soon!! :grouphug:

oh gosh... im so overwhelmed!
umm... because im passing blood when i urinate, and its VERY heavy, visible, and painful, does that mean i have a bladder dysfunction? i dont know how id react to urinating out a peice of my bladder...


are any of you in the austin area? i just moved to san marcos, and im not very familiar with the area., or the doctors here... tonight i urinated so much blood i thought i had started my period early for a second, but theres no abdominal pain, like usual... and im just so confused! i dont understand how i can feel okay one day and not the next... earlier i felt fine, and now im fighting off the urge to go pee right now even though i went before i started writing this... *sigh* i just... udont know what to do.

i just found out that my boyfriend found a scab-like thing inside my vagina after we had sex earlier today... it, i suppose, and in an effort to be as tactless as possible, came out of me, and during sex, it felt fine, until suddenly it hurt so bad i wanted to cry... it mostly went away, of course, or i would have stopped, but does anyone know what this might be???

I strongly suggest you find your self another Dr that sp. in IC. Other test should be done to rule out other things before IC is DX, but this is with any age of patient. Even children has been dx and treated for IC.

some other problems can mimic IC so its very important to have those ruled out first!

however some of the problems that mimic IC can also go alone with IC too so after the other things are ruled out or dx. it still wouldn't hurt to be tested to see if you have IC.

it wasn't to long ago Dr's believed it was only woman over the age 30 I believe it was or maybe it was 35 or 40 could have IC, but more research has been done since that time and proven that all ages can have it.
I was dx with IC when I was 26 my family MD didn't think it was possible for me to have IC exp. since I get the real UTI's most woman with IC feel they have a UTI but when tested even by a lab it showed up neg. when my was always poss. She sent me to a uro. He went over a questionnaire with me talked with me for a very long time did test etc. that pointed more and more to IC it wasn't a week later I was in the O.R being tested sure enough at that time I had a modern case of IC with hunners. IC rarely progress i think its like only 7% of icer that do progress sadly I was in that % that did. My IC went from a modern case of IC to a chronic case with-in six month period of time. I also develop more hunner ulcers. which does make IC more painful.

Even if you do get dx with IC remember its not the end of the world their are many good treatments out here that can help you get it under control. however with ic their are no ace in the hole treatments all treatments takes time to see if it will or will not work. Since we are all so different what works for one may not work for another.

when I was dx I didn't have a computer i felt so alone and scared till I found a GREAT support site. those patients are the ones who help me understand this diease a bit more, and showed me Yes their is a life with IC, however to get it under control it normally does. The IC diet is a great help. it may take a bit to learn your triggers on what you can and can't eat but one you do figure that out. (most high in acid foods and drinks are huge NO, No! in the mean time if you end up feeling you have a flare you can try a reg fav. tums to help settle things in the bladder back down, even using prelief which can help with the flares if taken before hand. please don't try prelief or reg fav tums or baking soda if you have high blood pressure.
Oh if you don't have high blood pressure and you have a food induce flare you can try one tsp of baking soda to an eight oz glass of water then drink quickly. yes it taste very bad,but that taste has nothing on that painful bladder that is a fact.

We look forward to getting to know you. Thank you for taking the time to let us know a bit about you. I give you my world this group will do all they can to offer you support.

Nothing is never to personal talk away.

I'm sorry if I have repeated myself in this thread it is almost four in the morning and I'm kind of going in and out so that is telling me I need to go to bed and trun this laptop off lol.
sending you hugs and prayers
Rhonda

P.S remember your never alone!!
They are people who understand what your going through and will be here for you to help you alone the way.

good night for now. I will check back tomorrow.

Rhonda a.k.a dixiefireball

Samantha,
You need to see a doctor to see what is going on. Many of us have had to change doctors and that is not uncommon either. Bleeding to that degree and your not having your period is not alright. You need to know what is going on.
My doctor felt I had I.C. since childhood. He just never thought of it as I had one female problem after another. It was later in life his light bulb came on and he knew what was wrong. I endured countless UTI's on a regular basis. I urinated so many times a day and never could hold my bladder long. Alot of pain and up all night. Because I had reported this from an early age on we just thought that was me.
Rhonda is correct in you need to see someone and get checked out becauase there are so many other medical conditions as well. Someone needs to check you and run test on you and find out exactly what your dealing with. That alone will ease your mind greatly.
I take it you live in Texas. I don't know doctors in that area as I am in CO, but I think in such a huge city as you live in you should be able to find someone. I have heard women talk of doctors in your area and Dallas. I can't remember any names off hand.
Please get to a doctor sweetie that will check you and test you.
Let us know how you are and know we are all here for you.
Shar

gosh you guys, thank you so much... i still dont know too much about IC so its still so overwhelming... not even it being IC but not knowing WHAT it is... i keep going to different doctors and all the do is cultures that keep coming up negative and then putting me on antibiotics ANYWAY to treat the infections they didnt even find... its very agitating... especially since ive had the symptoms for so long, and in the past 6 months everything has just gotten so much worse...
so, should i go see a urologist or a obgyn doctor? my boyfriends really concerned about the pain during sex, and the scab, and wants me to go see an obgyn, but if its IC, wouldnt a urologist be better?
and when i do go, is there something i should ask them to do specifically? im tired od just peeing in a cup and then getting sent home to wait again...
thank you guys so much
you dont understand how much this site means to me
:]

<3
samantha

Samantha,
I have always had UTI's that never tested out positive. My uro told me that some people just do test negative even though they have infection. I also never run a fever with one and know others that are the same.
Personally I prefer a uro for urinary matters and there are also gyno-uros and that is good.
Now let me warn you because I had interstim and it was used on me as a first line of treatment for my I.C., it is implanted device and it is not a first line of treatment for I.C. It is being pushed on the market and just wanted to let you know so you are aware of this. There are so many other options prior to that one. I have had so much experience with the interstim and people that went in to the uro and then suddenly they have the device implanted in their bodies.
I think if you can find a gyno-uro that would be great. A urologist knows so much more about that area of the body because they are trained for that area. I think most of us see uro's. It is really up to you rather you want a uro or gyno-uro. I like both and prefer a uro for these matters as many gyno's will refer you to one anyway.
There is alot of information on I.C and alot on here too. It is a disease of the lining of your bladder. Researchers still do not know exactly why it happens. They also don't know exactly what to for it as of yet. It effects the lining of the bladder. In my case I don't really have a lining anymore and I have the Hunner Ulcers. I have ulcers inside of the bladder. This is very painful but even people without the ulcers will complain of pain. Frequent urination is a real part of this too. And not being able to hold the bladder long, or just urinating small amounts. I drink alot of water to keep my bladder diluted due to my ulcers and that helps me. Also helps me on the UTI part. Some people can do that and some people cannot.
There are alot of drinks that effect this disease. If you look on here you will find the diet for I.C. Pops, coffees,teas and those artificial sugars effect I.C.,spices,tomato products,cranberries,apples,orange,pineapples. Really anything acidic does.
Yes there is a test that can be done to diagnose I.C. It is called a cystoscopy. I had mine under anesthia because it is painful.
You really need to consider getting a uro or gyno-uro and going to them with all the complaints your having. Many people will go through several doctors till they find one that listens to them. That is not uncommon at all and many will go to several doctors till they are finally diagnosed. Hopefully you can find one right off and not go through that.
Many people experience the pain and that is not unusual. That can be worked out once you know what your dealing with. Maybe for now your boyfriend can just understand you have pain. This is not your fault and you need to get a diagnoses to further know how to proceed with this.
You hang in there.
Shar

Samantha, :grouphug: :grouphug: :grouphug: I am so sorry you are suffering. I wish my computer wasn't acting up so I could have responded earlier. And can't add any more than what the others have said. But, please the next time you see blood go to the ER and the most important thing is you must find a Uro and fast. So you might get this under control. Watch you diet..stay away from soda, coffee, citrus fruit...these are just a couple things to avoid.
:grouphug:
JOY

Bladder dysfunction....or overactive bladder should not cause bleeding.
The amount of blood you are loosing is something you need to talk to a doctor about. I agree with the others about infection. You need to ask for a culture.....which should take 48 hours for results but it much more accurate.

I totally understand that the amount of info on IC is overwhelming....and it sure doesn't help to be having symptoms so much while trying to learn! ((hugs))
Normally a urologist would be better but incase the diagnosis is something else...maybe a urogyn would help more at this point to make sure that nothing is missed and your diagnosis is definate.

If it is IC pain during sex is normal...pain after sex is often more Pelvic Floor Dysfunction but that is often part of IC. Ofcourse there are other things that can cause pain during sex. There is a lot of things you can do to minimize the pain both during and after....if the pain is from pressure on the bladder often the only thing you can do for that is find a possition that avoids that....but since a lot of the pain is often muscle related (Pelvic Floor dysfunction) there are many self help tips to make things go better.

There is a questionaire...called the PUF questionaire http://www.allaboutic.com/html/aic/women.jsp I suggest printing it out and your answers and giving that to a urologist...ask for hydrodistention cystoscopy or a potassium sensitivity test. When you do give a urine sample make sure they do a culture!

Here are some resources to help you find good doctor! Because of the blood and scab I suggest a urogyn rather than just a urologist.
https://www.ichelp.com/AskTheDoctor/physicianregistry.html ICA ask sign up for their physician list
http://www.ic-network.com/md/doctorlistings.html ICN's physican listing
http://www.orthoelmiron.com/html/elm/pd_co...finddoctor.jspf find a doctor
http://www.suggestadoctor.com/doctors.php
http://www.revolutionhealth.com/care-providers/
http://www.urologyhealth.org/find_urologist/


I know this is overwhelming....but you are not alone. :grouphug:

ive had so many cultures done that i cant even begin to count them... they all come up negative but my current (and soon to be ex) doctor is unwilling to test me for IC since the its so "intense" but the more i read about it the more sure of it being IC i am.
i scheduled an appointment with a new urologist for next wednesday, but because of the scab i think i will look for a uro-gyn, i know its not natural and it kindof scares me...
but you guys are absolutly amazing. now i feel like i can go into an appointment and tell them EXACTLY what i want done (a hydrodistention cystoscopy or a potassium sensitivity test, right?) and maybe actually get this diagnosed.
the pain during sex isnt every time, and my symptoms come and go... is that normal? when im NOT having symptoms, i feel like im being over-dramatic, but then i DO have the symptoms, and i freak out. and its so hard for me to tell if it is IC, because it is so different in different people... i just feel kindof helpless, you know?
is there anything else i can do to make my symptoms more bearable? you know- just at home remedy type stuff?
<3
samantha

sorry, i know i keep posting multiple posts, but there was a couple more things i meant to cover... and i know i keep asking a lot of questions, its just that you guys are my only source of help here...
what sort of foods should i eat to help with the pain?
is there a certain medicine i should know to ask for?
what kind of surgical treatments are there?

ahh... i know, im asking a lot, but i still dont even really understand what IC is, and so im trying to learn as much as i can

thankfully
<3
samantha

Samantha, I would not allow them to do a potassium sensitivity test! It is out dated and barbaric. No one should have to indure that kind of pain even for a moment. Check the websites that Katrina has listed.
(((HUGS)))
JOY