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  • Is this IC?

    Hi! I need help! I am not sure if I have IC.
    I am a 37-year-old woman. I had pelvic pain for a few months, but my OBGYN discovered an infection. I took antibiotics, but shortly thereafter I developed IC-like symptoms. All of a sudden one day, I had the urge to urinate frequently and felt constant bladder pressure. That was 4 weeks ago. Since then, I have had some dull bladder pain (nothing unbearable) and a near constant pressure/urge to urinate. My OBGYN did two tests for a UTI , two weeks apart, and they both came back negative. I had a UTI about 20 years ago, but no urinary tract/bladder infections since. My OBGYN did an ultrasound and said my ovaries, bladder and kidneys look normal. Still, he wants to do laparoscopic surgery to see if I have endometrosis, which may be putting the pressure on my bladder. He said there is a slight change I may have IC, but he thinks it’s endometrosis . However, the ultrasound showed no endometrosis, but he says I could still have it.
    I suspect I may have IC. What do you all think?
    My symptoms are:
    Dull pain in the bladder area;
    Pressure on the bladder and need to urinate often (sometimes once an hour, sometimes 3 times an hour),
    I have no other symptoms, and I find that ibuprofin helps me feel better. It relieves the pain and pressure, although not entirely.
    Could this be beginning IC? Does it start mild and get worse?
    I had a baby (my first) two years ago, and my bladder has not really been the same since. It hasn’t had the same capacity, but that wasn’t really a big problem until now. Also, I have had a very high-stress job and for the past 18 months and have not urinated as often as I should. Before these symptoms set on, I would sometimes hold it until I was bursting and would sometimes only pee two to three times in a 10-stretch at work (because I was so busy.) I also wasn’t drinking enough fluids during the day. I wonder if this — combined with childbirth — could have messed up my bladder function.
    I am thinking of doing the elimination diet to see if it has any affect.
    Any advice? Thank you!

  • #2
    HI and Welcome!
    To me, your symptoms do sound familiar. My first symptoms were freqency and pressure and it all started after the birth of my son 31 yrs ago and a very stressful life.
    I would highly suggest the IC diet...staying away from caffeine, teas, anything citric or acidic, night shade foods, spicy, seasonings, fake sugars etc....some times it's the least we expect when it comes to food.....like Bananas because of the potassium and for me calcuim pills.
    There's several great meds for frequency...Elavil being one of them (Prescripton) or over the counter (AZO, Uristat) and to help heal the mucus lining of the bladder...Elmiron (Prescription)
    I wish you luck on trying to get this figured out and hope you get it under control soon.
    Everyone here is very helpful, knowledgeable and here to listen and give great advice. Keep in touch. Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

    Comment


    • #3

      It sounds like it could be IC but then again it could be endo. They have a lot of symptoms that are similar, espically if the IC is on or in the bladder. Your dr is right though that it could still be endo because unless endo has actually grown through a structure in your body it will not show up on an ultrasound, it could be everywhere and they wouldn't see it. This is why they want to do a lap to see if it's there or not, it's the only way to know for sure with endo. I hope that you don't have either because neither one of them are fun, I have both. Hope you get some answers soon.
      Christine



      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus

      Comment


      • #4
        It's possible that what you have is IC, but there are also other possibilities. It's best to work with your physicians towards a diagnosis. Putting yourself on an IC diet shouldn't do any harm and it might help. It's very important to your general health to get enough water every day.

        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        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: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        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.
        [3MG]

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

        Comment


        • #5
          I agree with Donna, you should work with your doctor to get the right diagnosis. It could be IC , it could be endo, or even both. I think I have endo as well ( my gyne highly suspects this). One thing is, do you feel your bladder symptoms are bad usually only around your period? Usually with endo, your bladder will be bad around your period more so than at other times. At least that is what I was told.
          I hope you get an answer and some relief.
          Jen

          Comment


          • #6
            I feel your pain

            As others have said, my IC began almost the exact same way. Bacterial vaginitis which was treated and then feeling that the infection was recurring with tests all negative. Then I got an UTI which my idiot doctor treted incorrectly. By the time I got to a decent doctor, I fear the damage had been done. After finally recovering I started haveing frequency, bladdar spasms and eventually pelvic pain. I agree with the others that it could well be something other than IC.
            Try the elimination diet, I also find prelief helps when you want to eat a no-no food. I use it regualrly and it is high in calcium. It is imparitive that you urinate more than twice in ten hours. I try not to push it past three hours and usually every two. I have the benifit of being a teacher with the bathroom righ across the hall, so with 45 minute classes, I can go fairly often. I also suggest trying to reduce your stress level. I am horrible at this myself, but it is good advice all the same. I also wish you the best of luck. Hang in ther and be persistent. I am sure it will get better.

            cshell

            Comment


            • #7
              Your symptoms sound very similiar to mine - you can read my story by clicking on the link in my signature line.

              Like Donna said, there are other things that should be ruled out that could lead to similar symptoms.
              Kim

              Diagnosed August 2001

              Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


              Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

              I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

              *****************************

              “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

              “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

              Comment


              • #8
                Thanks for all the support, advice and suggestions. This really is a great site packed with useful information.
                I have an appointment wih a urologist and went shopping for food to start the elimination diet.
                Does anyone know how long it takes before you notice a difference after starting the diet?

                Comment


                • #9
                  It might take a while since you are eliminating foods and you have to figure out what your flare foods are.....but just deleting the majority of the flare foods might do the trick...or at least help you right off. Good luck! Roxie

                  Double Spinal Cord Stimulator surgery 8/09
                  Unsuccessful MiniArc sling surgery 12/07
                  Dx'd Hypothyroid
                  Dx'd Chronic Axonal Neuropathy & Myopathy
                  June 2007
                  Dx'd IC May 2006 (after suffering for 25+ yrs!)
                  First Cysto 1979
                  First Hydro 1981 (Many treatments since then!)
                  Collagin"Durasphere" injections for urethra
                  Gall bladder surgery Aug. 2004
                  Gastric Bypass Dec. 2004
                  Dx'd: Barrett's Esphogus July 2004
                  Dx'd: Vaginal Atrophy 2005
                  Bladder surgery 2000
                  Dx'd: IBS 2000
                  Hysterectomy (fibroids) 1999
                  Laminectomy 1989
                  Dx'd: Degerative Disk Disorder 1989

                  For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                  I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                  Comment


                  • #10
                    I would try to locate someone who has specialized in IC or treats a lot of people for IC. IC mimics a lot of problems. IC is a lifelong disease that has no cure but does have effective treatment for many.

                    My urogyn thinks my IC will not progress because my treatment is effective and I was diagnosed quickly. From what I understand IC is usually progressive if not treated effectively.
                    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                    My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                    Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                    I post to encourage and offer total support for rescue instillations.
                    Find me on facebook: L. Clark Thomas
                    Louann

                    Comment

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