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All my symptoms led me to this site.Info needed please.

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  • All my symptoms led me to this site.Info needed please.

    I am new here,30yrs old mother of three,but badly need advice from people who may know what I am experiencing,all my symptoms led me here,seems like IC is what I have.Since February I have been having a burning/swelling feeling in my urethra and surrounding vaginal upper area,which is pretty much constant.When it first started it was real bad and on and off,but mostly worse after I urinate,not while urinating,it's actually a relief feeling while urinating.Now it's leveled off to a tolerable discomfort and comes and goes,along with the frequency to urinate and some urgency,I always make it to the toilet,but seems like little comes out,then 5 minutes later feel like I have to go again. Sometimes I can sit there and keep going little by little for like 10 minutes.A lot of times it feels like I really have to go,then not about half actually comes out,can press on my bladder area and feel like I still have to go. I just don't know..have been to the gyno tested for everything under the sun,all negative,been to my reg doc,tested for everything,urine cultures too, all negative. So on May 5th I'm seeing a Urologist. I'm kinda scared don't know what to expect or whats to be expected when I go. Any info or advice would be GREATLY appreciated Not to mention this has put a real dent in my hubby and I's sex life, so scared this is going to ruin me,I am frustrated and at my wits end.

  • #2
    Hello, I know this is overwhelming at first. Seeing a urologist is a good step now that other things have been ruled out. The urologist will want to talk to you and probably run more tests. Interstitial cystitis is often a diagnosis of exclusion. For now you can start learning more from this site about IC and try following the diet. That may make you more comfortable until you see the urologist. If he does diagnose you with IC the two of you will decide on a treatment plan. There are medications and other treatments and natural remedies that can help with the symptoms of IC.

    As far as being intimate with your husband. There is more then one way to skin a cat or to show your love for each other. If one way is too uncomfortable tell him that youll both need to be more inventive and he will have to be very patient. I wish you all the best at your appt and hope that its not IC but if it is, we are all here to support you
    Diagnosed with IC in 1997. Currently taking Elmiron, Hydroxizine, Aleve, Ditropan, Glucosamine, Chondroiten, MSM Quercitin, Vitamin D, Probiotics, Co-Q 10. Also working on bladder retraining

    “The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.”~ Philipus Aureolus Parcelcus


    • #3
      make sure you tell your uro everything, don't leav anything out, As I am new too IC as well I'm still learning. I did get relief with instills. As for sex we've tried different things and it seems to work best with me laying in front and him behind me on our sides. I do flare and have pain after so I use over the counter Tiger Balm pain patches. Ive tried very hard to stick with the diet but I'm having a hard time not drinking my morning coffee. I do hope you find relief and theres lots of good info on this site.
      IC diagnosis 3 weeks ago.
      Vesicare 10 mg once daily
      IBS and Gerd-Zegerid
      IC diet
      Elmiron 100 mg three daily
      Hydroxyzine 25 mg at night
      Amitriptyline 10mg at night
      Diovan 60/12.5 daily
      Topral 50 mg daily
      Zoloft 100 mg at night
      Klonopin .5 twice daily


      • #4
        Try pouring nice warm water over your genital area as you are urinating. Its soothing and you don't have the feeling of burned tissue afterwards.

        I drink only Evian water and sip it all day long from morning til I go to bed. 2 big sips every half hour.

        Diet is very important. For me, I have to watch liquids the most, tea, coffee, carbonated drinks, juices, beer, wine, spirits, Gatorade - pretty much all liquids except Evian water. I've, also, eliminated whole wheat and dairy.

        Warm showers only and rinse out the genital area by hand with cool to warm water. No hot baths or showers!

        I hope this helps. I hope the urologist can help. Be sure to tell him or her all your symptoms in detail - what, when, how much, everything!!

        It will help them diagnose you properly. Bring someone in with you - this is very good for remembering things while you are there and after wards. Write your symptoms down lest you forget an important detail due to nerves. Good luck!!


        • #5
          Hi I justed wanted to add a welcome to the ICN. You have recieved some very good advice. Your symptoms do sound like they could be IC, but you need to be sure it isn't anything else. A good uro can help you determine what is going on with you, in the mean time be sure to try the IC diet, it can be very helpful.

          Keep us updated, I wish you the best.

          Link to the patient information, everything from What is IC? to Disability

          American Urological Association Clinical Guideline
          Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


          • #6
            Thank you ALL

            You all have been very helpful,and before joining I did come here and visit,trying to read up and see if I could match any or all of my symptoms to others.It is comforting to know that at least if I do have IC that there are plenty of remedies and medications and or tricks to soothe or prevent flare ups. I'm no doctor but really feel like this is what I have. I am a coffee addict and also chocolate too,I have read chocolate is a no-no But...I ammore than willing to do whatever it takes to feel better.Currently I am at a low point as far as pain and discomfort (phew) But feels good one or two days then it comes back. And I haven't really been able to link the flares to anything specific just yet. Thank you all again,very comforting to hear all of your advice and knowledge about IC. And I will update after I see the Uro on thursday!