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21 yrs. IC patient...needs to talk

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  • 21 yrs. IC patient...needs to talk

    Hi, i'm really glad i found this site. If i would have known it was here a year ago i would have already joined.
    Sorry if i give too much info about my condition but here is how it all started. I became sexully active again with my boyfriend and after a while i developed a wicked bladder/vaginal infection. The family doctor i was seeing for this wouldn't give my large enough doses of anitibiotics so my UTI became resistant to antibiotics. For 5 months i was bombarding my system with antibiotics that would never kill this infection.
    Finally i was referred to a Urologist, i was thankful because he gave me the proper anitbiotics, and cleared my infection at last....of course that wasn't the end of it. Now, a little over a year later, i have had sporadic symptoms of a UTI, and i would always have my urine tested, and cultured and nothing grew. So here i am with these horrible symptoms and no infection present. I feel like i have heartburn inside my bladder. Sometimes i feel like i have a hair sitting in my urethra.
    I have had a voiding test, that wasn't it. An IVP, nothing was found. I had an MRI done, no problem presented itself there. The next test my Urologist wanted to do was a cysotscopy but i just blew it off because i was sure they wouldn't find anything there as well. But i always thought that was the test i needed in the first place so i am going to consider getting it done.

    I have been reading about other things, after months i've tried to ignore this and figure it's no big deal but it's really starting to worry me now. I read things about other diseases that mask itself as IC. I've never been promiscuious, and i have never had a genital herpes blister, and neither has my partner, but sometimes i wonder if my symptoms are from something of that nature. Does anyone know the likelyhood of that?

    See what i mean, i totally wrack my brain at trying to figure out what is wrong with me. I feel for anyone who has this problem no matter what age they are. I've had this for a year now and i'll be 21 in a few weeks. I've been on Bactrim that i take after intercourse. This prevents me from actually having a bacterial infection. But the pain stays.

    For the pain i take Urised but it is hard to take the pills four times a day. Whenever i think i can stop the Urised, the pain creeps up again. Sometimes i go weeks with just a tiny twinge here and there and it doesn't bother me, but this sneaky IC always comes back full force. It just doesn't seem right to have to keep taking those pills!
    I'm curious to know how everyone elses IC started. Doctors tell me that the repeated doses of antibiotics shouldn't have ruined my bladder lining, so what is it from!!!! thanks for listening [img]smile.gif[/img]

  • #2
    Hello, NB. Symptoms started for me when I was 22-23. I have never had a UTI, nor a bladder infection other than my ic so I can't compare to those infections. My first symptom was intense pain. I still have this pain, and nothing takes it away. I was in town with my dad when all of a sudden I could feel myself ovulating. I was in so much pain, I bellied over and my dad took me to the er. They did an external ultra sound and and found a lesion on my ovary. They referred by to my gynecologist thinking it was an ovarian cyst. My gyn couldn't see me so I was sent to another, and I took with me the ultrasound reports from the er. He said that he couldn't rely on them because he didn't do the ultrasound himself. He said that the external ultrasounds are unreliable and that he would need to do an internal ultrasound before he could help me. I told him no because it is to painful to have anything inserted (I have nerve damage from my ex). He escorted me out of his office while telling me that I needed to grow up, and that I would have to live with my cyst until I am willing to have the ultrasound done. I went to other doctors, but they don't like to step on eachother's toes, so they wouldn't help me, telling me I was in need of therapy. You need to know that I come from a small town in southern New Mexico. Doctors are scarce. After being told that it was all in my head several times, I started to second guess myself, and stopped going to the doctor for this intense pelvic pain. I moved to Denver in 2000 and was required to get a physical for my job. That was the first right step to being diagnosed. I had mixed feelings when first diagnosed. Perhaps you could read my posting I wrote a couple days ago. It is posted as "I am new to this message board" I think we can all relate to the frustrations of doctors not seeming to know what they are doing until you finally find the right doctor. I also think that you will find a lot of us have been in the same shoes you wear at one time or another. The best suggestion that I can make using my own experiences, is you are your best advocate, make sure you are properly taken care of medically. You are the one who has to live with this disease. Johnna


    • #3
      I'm so sorry for your pain. I'm glad to be able to talk to someone who knows it's not all in our heads. I know what you mean too, there's medicine for the frequency, the urgency, the burn, but not for that pain that just sits there and never goes away. [img]wink.gif[/img]


      • #4
        It does sound like what you have might be IC. I do think it would be wise to see your urologist and work towards a diagnosis. One thing that would do is to confirm what is wrong so you can begin to deal with it. I know that when I was diagnosed I was very relieved to know I didn't have cancer. I think each of us worries about different things --- in my case, my father had bladder cancer so that was what I worried about.

        I was diagnosed by hydrodistention in a hospital setting.

        Stay safe

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        • #5
          Go 2 your URO and have a Cystoscope done...if this "doesn't show anything" and your sympt. persist, ask for a HYDRO !!!!!!
          I just had mine done yesterday... ( it was a breeze )I was not going to suffer for YEARS without a Diagnosis or propper treatment [img]mad.gif[/img]
          I was informed by my DR. that YES it is IC...I was right all persisdent and get 2 the bottom of this !!
          You are not alone and we all been in your shoes <img src="graemlins/scream.gif" border="0" alt="[scream]" /> I am not embarresd to say that I since have started 2 see a " therapist " to help me out with my STRESS & ANXIETY of all of this <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />
          Three month ago ...if it wasn't for my lovin, wonderfull and supporting husband...
          This Website with all its compationate people who will suffer with you and give you support as well, as advice..I would not be here today , I truly believe that!!
          Your imotional wellbeeng is very important, some people deal with this better than others <img src="graemlins/scream.gif" border="0" alt="[scream]" />
          if its getting to you, see a therapist and let them help you !!
          I was put on ZOLOFT and XANAX to help me cope <img src="graemlins/baby.gif" border="0" alt="[baby]" />
          All of this is very overwellming for anybody, but you will adapt to this...IT WILL GET BETTER [img]wink.gif[/img]
          Hang in there and welcome to our familie <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" /> Christine
          I promise not to laugh... if you promise not to cry

          Christine .....The GERMAN GIRL ( who can't spell )


          • #6
            My cystoscopy is scheduled for Aug. 8, it also includes the hydro and biopsy. I hope they find out what is wrong. I'd rather have them see something than not find anything because then it will take more time, energy, and money to find out what it actually is.
            There's one person in my life who is my boyfriend of a year and a half and i don't want him to feel sorry for me, or always give me special attention(my cystitis is pretty manageable anyway) but i get the feeling that he thinks i'm just a wimp. Sometimes if i'm having a flare he says something insensitive about how it's not normal to have to go to the bathroom so many times in a row. No s***t?!!! I know this already. Anyway, i guess i needed to vent, thanks [img]mad.gif[/img]


            • #7
              Hi NB-
              With regards to your boyfriend has been with me for 4 years or so while I've had IC (in fact, I started showing symptoms at the beginning of our relationship). He definitely wasn't super sensitive in the early going, but now takes it very seriously. If the diagnostic does show that you have IC, your boyfriend may grow more sensitive to your problem. Also, I made a point to show my boyfriend a lot of research on IC, so that he knew why I had the frequent bathroom trips and discomfort. Most importantly, I wanted him to realize that I was not avoiding sex because I didn't like it, but that it was painful for me at times. We have settled into a good place now, where it doesn't wake him up every time I go to the bathroom (he has become a harder sleeper) and he is much more compassionate and supportive. He even started looking up new doctors and research for me! I hope after time your boyfriend shows the same support...I think it is essential. Good luck to you!


              • #8
                [img]frown.gif[/img] I had been having problems since I was 14yrs. But I did not get diagnosed until 1996. I am now 32yrs. old. I have 250-300 tears on my bladder. I suffer with pain trememdously but I have doctors who are willing to help. The pain is excruciating but I live day by day. I have an excellent pain doctor. I do understand and I will keep in touch. Try to let pain not overtake you but you overtake the pain. Good luck and God bless. [img]tongue.gif[/img]