Could I have IC?

[ZHeather]

I accidentally posted this in the IC stories section...now I am going to post it in the right place with a little more info.

I am an 18 year old girl who just graduated high school.

This all began 3 months ago. I started have urethral discomfort, burning urination, and urinary frequency and urgency. Doctors thought I had a UTI...did multiple cultures, no infection. I had bacterial vaginosis at the onset of the symptoms, that was treated successfully, but my bladder symptoms remain.

The worst starts about 7-10 days before my period. During the other days of the month, I can tell I still have symptoms, but they're not bad. I can live a normal life. During these 7-10 days where I flare up, I have to urinate at least 25-30 times a day. I will go pee, and almost instantly afterwards, I will feel a small, nagging sensation I have to urinate again. When its at its worst, it will be like I have to pee every 30 mins or I am going to wet myself.

I also kind of wanted to talk about something personal.... any sexual acts I do with my boyfriend don't really hurt... but we don't have vaginal intercourse. He does "penetrate" me, let's say, but not with his penis.
Sometimes it hurts, but only because of odd angles, or not being lubricated enough.

I went back to the doctor at my second flare up. She put me on antibiotics, but did not do a culture. I took the antibiotics, and they didn't help. I felt better a couple days after the antibiotic but only because my period was here.

She also referred me to a urologist.

Well, he did a "mini-pelvic" exam, and he took a urine sample. They did a culture, no infection, but I told him I wasn't really having any symptoms at the time. He said this was recurring UTIs, even after I told him the first time this had happened, I wasn't put on any antibiotics because they couldn't find an infection. This really didn't seem to sink in. Well, he schedualed me for a Renal Ultrasound, which I did already, and am waiting for the results. I have an in office cystoscopy on October 7th. He also put me on a low dose of antibiotics EVERYDAY, saying he hoped that they would stop another "infection". Well they didn't, because I don't think my problem is UTIs.


I just kind of feel lost, because I hoped this guy would know about IC and possibly bring it up, but it seems he is bent on "recurring UTIs". He told me to call him if I started having symptoms again, so I am.

I just wanted to know what you guys thought and whether it sounded like IC or not. I don't have any pain except a burning sensation in my urethra. I know pelvic pain is typical with IC, but can you have IC without pelvic pain? And without painful sexual contact?

[leelee88]

If you are not comfortable with what your Dr is telling you I suggest you get a second opinion.. And you can have IC without having pain..This is the way I started. When I was about your age. I only had frequency and urgency, nothing more.. I was not Dx until age 36!! I believe I have had IC since my teens. And yes it seemed to be worse during around the time of my period.. So if you feel strongly about this, then you keep fighting for answers! And do not stop until you get the right ones! This is your body, and I do believe if you have IC and treated early you have a good chance at getting it under control..Good luck..There is a link on my signature to the Patient Handbook you should check it out..

[SharonA]

Yes, you can have IC without pelvic pain and/or painful sexual activity. My symptoms began as horrible pelvic pain that I remember being like last stage labor pain only worse. Now, the pain I have is normally a slight burning in my bladder that increases if and when I flare.

Many of us have had to see several doctors before we found the one who could help us. This is very normal...sad, but normal. If your present doctor can not or will not help you, then I think it a good idea for you to seek a 2nd (or more) opinion. You deserve to get good medical treatment. (((Hugs)))

[L. Thomas]

You really should find someone who will work with you. Having the right doctor and being able to work together is essential.

I started with a gynecologist who realized he didn't know what was wrong and referred me to 2 urogynecologist. He wouldn't give up. The 3rd urogynecologist (who is an IC expert..even though my gyne didn't know it) diagnosed me on the first visit and I left the office with effective treatment that has continued to work for me.

My gynecologist said he would have never suspected IC with my symptoms. So you see, there are lots of people that have IC and the doctors don't recognize or treat you for IC unless you have the classic symptoms.

Dr. Dell told me right off the bat that IC was a real imitator of tons of conditions. He thinks that if you have pelvic problems you should think "this might be IC" rather than, "this isn't IC because the symptoms don't fit". He says people suffer needlessly from IC because it is not diagnosed by most MD until you have an advanced case.

He thinks my IC probably won't progress because I was diagnosed early and my treatment is effective. But more importantly, my MD is totally committed to keeping my IC in check.

[ZHeather]

Thanks for all your help.

L. Thomas, its comforting to know they caught your IC early so it won't progress...I'm really hoping they catch mine early (if it is IC, but I'm almost 100% positive it is). I mean, its so bad right now, I just feel like I am never going to be normal again. I feel like I'm going to have to live my life next to a bathroom. I cry a lot...I'm really sick of this. I mean, I look at everyone else living their life normally and I think "Why me?". I just want a little relief...

I have an appointment to go into my urologist tomorrow and give a urine sample... which they will culture and probably come back normal. I'm hoping that will get it through their heads.

[ZHeather]

So, I really don't think this urologist is going to help me at all.
I've had a bad experience with a receptionist or a nurse or whoever now on the phone TWICE. It's not the receptionist I talk to in the office either, because she's really nice. I don't know who this lady is, but she really...really getting on my nerves.

Yesterday she took an attitude with me while trying to set up an appointment like I was stupid.

Now today I come in for a urine sample, I leave it, and she calls me again and is like "I don't know why you brought in a urine sample today" like I was wasting their time or I was stupid again. I told them on the phone yesterday why I needed a urine sample taken and I told them in the office TODAY! So I'm like I think I have a UTI/ I'm have UTI-like symptoms. She's like I need to know what your symptoms are. I'm thinking, I told you that already, but I tell her again...frequent urination, burning urination.

UGH, you know, I feel like crying again, because I just want some help, but it feels like these people don't want to help me. It feels like they think I am wasting their time. I'm SO ready to go to a different urologist already. There is no sense going to a doctor whose employees make me feel bad.

[Briza]

:grouphug: It is devastating for most of us when things start going on down there, and at your age I imagine even worse because you may not have the tools to deal with it AND looking at a life ahead filled with problems.

Here a few things I would recommend if I were in your situation (and I have been):
1. Get retested for bacterial vaginosis...even if it comes back neg and even if you and BF have not had actual intercourse HE may need a round of antbiotics. BV is a nasty little bug for women, but men do not usually get symptoms but can be carriers if not treated. So, he probably needs to be treated as well with antibiotics, and even if you come up clean, abstain from any touch feely stuff because BV is notorious for being passed back and forth between partners. It is NOT considered an STD because generally it is just an overgrowth in the woman's natural flora of bacteria, similar to a yeast infection. It's always there, but for some of us unlucky women, we are prone to BV and yeast infections, and if you are prone to either of those, then any intercourse, touchy feely stuff, can cause some irrititation and cause an overgrowth. Believe me, been there, done that.
2.ANYTIME you have a urine dipstick in office test done, TELL the doctor that you want to have the urine sent to lab to be cultured. Sometimes bacteria that don't show up on the dipstick test will show something that can be treated when cultured. AND THEN, if even after culturing, nothing shows up, then the dr will have to concede that bacteria/UTI is not the problem. Sometimes you gotta be firm about this and directly tell them to send for culturing, b/c most times they won't if there are no signs in the dipstick test. So whether it is actually a bacterial thing going on or not, having it cultured will show the doctor that this is or is not a UTI and then HOPEFULLY the dr will be open to more extensive treatment.

Well I could go on and on, but I will leave it at that for now. I hope you can get this or another doctor to work with you. Unless I am very comfortable with my drs' staff and nurses, and feel that they are accomodating AND reliable, I ALWAYS ask to speak to the doctor himself. You've come to the right place for support and info, that's for sure. But please go thru 1 & 2. Your BF probably needs to be treated for BV, otherwise you will continue to pass it back and for to eachother, intercourse or not, and that is a very vicious cycle! Take care, Bri:)

[ZHeather]

:grouphug: It is devastating for most of us when things start going on down there, and at your age I imagine even worse because you may not have the tools to deal with it AND looking at a life ahead filled with problems.

Here a few things I would recommend if I were in your situation (and I have been):
1. Get retested for bacterial vaginosis...even if it comes back neg and even if you and BF have not had actual intercourse HE may need a round of antbiotics. BV is a nasty little bug for women, but men do not usually get symptoms but can be carriers if not treated. So, he probably needs to be treated as well with antibiotics, and even if you come up clean, abstain from any touch feely stuff because BV is notorious for being passed back and forth between partners. It is NOT considered an STD because generally it is just an overgrowth in the woman's natural flora of bacteria, similar to a yeast infection. It's always there, but for some of us unlucky women, we are prone to BV and yeast infections, and if you are prone to either of those, then any intercourse, touchy feely stuff, can cause some irrititation and cause an overgrowth. Believe me, been there, done that.
2.ANYTIME you have a urine dipstick in office test done, TELL the doctor that you want to have the urine sent to lab to be cultured. Sometimes bacteria that don't show up on the dipstick test will show something that can be treated when cultured. AND THEN, if even after culturing, nothing shows up, then the dr will have to concede that bacteria/UTI is not the problem. Sometimes you gotta be firm about this and directly tell them to send for culturing, b/c most times they won't if there are no signs in the dipstick test. So whether it is actually a bacterial thing going on or not, having it cultured will show the doctor that this is or is not a UTI and then HOPEFULLY the dr will be open to more extensive treatment.

Well I could go on and on, but I will leave it at that for now. I hope you can get this or another doctor to work with you. Unless I am very comfortable with my drs' staff and nurses, and feel that they are accomodating AND reliable, I ALWAYS ask to speak to the doctor himself. You've come to the right place for support and info, that's for sure. But please go thru 1 & 2. Your BF probably needs to be treated for BV, otherwise you will continue to pass it back and for to eachother, intercourse or not, and that is a very vicious cycle! Take care, Bri:)

I was already retested for BV, its neg. I'm not having any of the symptoms I had when I had BV. When I got treated for the BV, I was in a period of having reduced urinary symptoms. I really think it is gone.

My doctor also told me that men can't get BV, and that she didn't see any reason giving antibiotics to someone who probably didn't need it.

Thank you for the support :) I hope this doctor AND his staff can figured out what is wrong with me. All I can do is remain hopeful.

[Briza]

Heather, I am very happy that your most recent test showed neg for BV! That is good! :)
But please don't be mad at me for disagreeing with your dr...I suffered w/ BV for 10 years in my twenties, and tho your dr is right, it is not considered a man's condition, BUT IT CAN BE passed back and forth...I hope that is not the case for you, but it IS possible...if I can find some research studies on that I will pm them to you! ok?
I will keep you in my prayers and also remain hopeful that your drs will help you figure this out and that you will get appopriate treatment very soon.
Best wishes,Bri:)

[ZHeather]

Heather, I am very happy that your most recent test showed neg for BV! That is good! :)
But please don't be mad at me for disagreeing with your dr...I suffered w/ BV for 10 years in my twenties, and tho your dr is right, it is not considered a man's condition, BUT IT CAN BE passed back and forth...I hope that is not the case for you, but it IS possible...if I can find some research studies on that I will pm them to you! ok?
I will keep you in my prayers and also remain hopeful that your drs will help you figure this out and that you will get appopriate treatment very soon.
Best wishes,Bri:)

Thank you so much for being so helpful :)
I'll talk to him about it.

[judy45]

Your flaring seems to be brought on right before your period, you might want to try switching your birth control pill or taking them if you are not already on one