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Is it worth getting diagnosed? Please help?

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  • Is it worth getting diagnosed? Please help?

    Hi! I joined this forum a couple of days ago after getting back from my doctor and being told I didn't have a UTI (had urine test). I have all the symptoms though, so then I thought that I may have interstitial cystitis.

    However, when I came on here I began doubting. I've read a LOT of forum posts over the last couple of days and now reckon that most of you have symptoms far worse than mine, and far more frequent. I literally got tears in my eyes when reading about what some of you had been through, and please know how brave you are to be dealing with this so well.

    When I get the symptoms, I normally cry, not wanting to, just a reaction to how much the pain hurts. My greatest desire is to just sit on the toilet until the horrible feeling goes away. I've used up all my sick days at school, and more days than not I have the feeling. It's only a slight burning until I go to the loo, then it gets worse.
    It's also embarrassing admitting this, even to online strangers, but it flares up for days after I masturbate. I don't think I'll ever be able to enjoy sex because it'll be such a worrying experience, wondering whether or not it'll hurt after.

    Anyway, I think that I probably do have IC, because what else could it be? (I'm not sexually active). I'm wondering whether it's worth getting tested for IC? I really don't want to, I read about some of the tests, like cystoscopy, an REALLY dont want to do that. I have severe depression and anxiety and am only hanging on by a thread anyway. I'm really worried getting these invasive tests done, and being so embarrassed and feeling so out of control might do more harm than good.

    So is it possible to just self-treat without seeing any doctors or getting prescribed things? If yes, any tips? Please help, I really desperately don't want to go to the doctor.

  • #2
    You sound exactly like me 5 years ago. I suffered for 6 long, miserable months until I went (visible blood in my urine did it!) to a urogynocologist. As IC Donna says, not knowing is much worse than going to the urologist - all that mental anguish. I have anxiety too, so I know.

    I can never get those months back and I think they aged me as the anxiety takes a terrible toll on your body.

    State where you live and ask if anyone here can make a recommendation for a urologist or a urogynocologist.

    The cystoscopy was for me, nothing. No anesthesia - just done right in the office - 20 minutes we chatted all the time. Before I knew it was over and I had my dx. The critical thing about getting a dx is the doc can write rx's and they will help you. Plus you will feel so much better, psychologically, and won't feel like you are suffering alone.

    Get a personal recommendation for a good doctor, either ask here or look on Yelp or some such review board.

    I was lucky as I just stumbled into mine (figuratively.) I looked up Elmiron, a main IC medication, and they had a list of recommended urologists and he was the closest one to my house.

    Hope you feel better - and decide to make the appointment!!


    • #3
      Some doctors are willing to make a diagnosis based on symptoms alone. If both you and your physician are comfortable with that, I say go for it. I was diagnosed by hydrodistention in a hospital with anesthesia.

      In the meantime, you can give the IC diet a try. If what you have is IC, eliminating problem foods and drinks may help significantly. You'll find a link to the latest food list in my signature below.

      Sending healing thoughts,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help:


      Diet list:

      AUA Guidelines:

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        hello! I have not been yet diagnosed, and personally I refuse too. In order to be properly diagnosed most people need a hydrodistension which stretches the bladder beyond capacity so the uro can see the bladder lining. Not to worry they sedate you, however in SOME case it can make IC much much worse. For some it actually makes it better for a short period, but it is always a gamble, and one I was not willing to take. Have you tried the IC diet? There is a link on the ICN web page. You can also look up IC diet on google

        Currently I am on the anti candida diet and the alkalizing diet, which seem to help my symptoms. Different parts of the month are better and worse, but I think my sticking to this diet for a very long time will help improve further. DIET is ussually key for many of us

        I know for me sex and "fooling around" did seem to make thing flare up more (frequency) but over time that gradually went away, for me anyways. I have sex fine, no pain nothing I do find tho that after I have to pee immediatly... haha.

        I currently am on Elmiron, and I think it seems to be helping, although I have not made it quite 3 months on it yet. My dr. "diagnosed" me mainly on ruling all other possibilities out.. ie infection, cysts, cancer, etc. by doing just a simple cytoscopy with out a hydro. He told me my bladder looked "normal" after this, (clearly it is not) and that is why many need a hydro, because you cannot see the IC without one. It is possible to have IC without being "diagnosed" though....

        Anyways, I hope I have helped! Ultimatley it is up to you what you choose to do in relation to diagnosis etc. I wish you the best!

        28 yrs old,

        I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

        What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

        Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!

        Me in my graduation gown!


        • #5
          Thankyou very much for all of your replies! I just got home from school and was really happy when I saw that my board had 3 replies!

          I'm really grateful, and it's really nice to know I'm not alone in feeling like this.

          I think that I'll hold off it for now and just see whether I can help myself with the diets etc. if I don't get any better, I'll take it further medically.


          • #6
            Not all urologists are doing cystos/hydros. But it is a smart idea to get properly diagnosed because other conditions can present the same symptoms as IC. Bladder cancer, bladder stones, kidney stones, STD's, are some conditions that need to be ruled out. IC is a diagnosis of exclusion. In-office cystoscopes(without hydrodistention) done by an experienced, compassionate urologist does not have to be a bad experience.