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Could I have IC or a mild version of IC?

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  • Could I have IC or a mild version of IC?

    about six weeks ago I started to have urgency and frequency.No other symptoms & no pain. I thought it was a mild UTI that would go away on its own. That went on for 1wk and then I was off to Italy for spring break, where it flared up severely! I was having major urgency/frequency/irritation of the external urethra,labia,and clitirois. No pain, just extreme irritation & discomfort.So the pharmacy gave me bactrim which didnt work, then a week later I ended up at the emergency room in the hospital where they gave me another antibiotic, which also didnt work.

    When I got home to the states on April 2nd I went in for a urinalysis to find out that it was normal!!

    I have since seen 3 urologists who all say the urethra, tissue etc looks normal. all ua's have come out normal and one urologist did an ultrasound with a full and empty bladder, also normal. I have not had a cysto yet.

    The last Urologist refered me to an Obgyn, I have now seen 2 obgyn who also swabbed, probed, cultured and all came out normal! The Obgyn wants to test for IC, the urologists dont think its neccesary.

    At present, my frequency&urgency have subsided and now I just have an external itchy, burning urethra, but still no pain in the bladder. All the irritation seems to be coming from the tip of the urethra.

    Does any of this sound even remotely like IC? Is it possible to have a mild version of IC with irritation, sporadic urgency/frequency and not have the bladder pain? Should I do a cysto? When they do the cysto do they also do the potassium test to see if your bladder is sensitive to it?

  • #2
    Yes, your symptoms do sound similar to IC symptoms. That said, it is good to rule out other possible causes for your discomfort - there are other things that can mimic our symptoms.

    Have the uros said why they think testing for IC is unnecessary?
    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


    • #3
      HI! I too think your symptoms sound like IC......hopefully it is a mild case. I think you need to have all the IC test run, just so you'll know what you're dealing with. Start the IC diet....see if that helps with the flares and pain. You might try MSM gel for the urethra pain......you can order it online. I wish you luck in finding out just what you have........You have come to the right place to find info and friends..........Take care.....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


      • #4
        What's "MSM"?
        Thanks!

        Comment


        • #5
          MSM gel is an organic sulfur (methylsulfonylmethane) Check out their website for more info...... www.jacoblab.com the gel is around $21 plus shipping and tax I hope it helps you! 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


          • #6
            msm gel?any others?

            Thanks for all of the replies!

            The msm gel? what exactly does it do? My family doctor had said to put cortaid(hydro-cortizone) on it to take away inflamation, but the urologist did not look thrilled with that, yet did not prescribe anything else. so i have been using cortaid for the itchy/irritation/inflamation etc...

            Are there any other creams or gels anyone recommends for an external irritated urethra?

            My uroligists all ruled out the cysto because they said the external urethra tissue "appeared" normal. They also told me that anyone with IC has "extremely excrutiating" pain and that there bladder has cracks and ulcers in it and since I did not fit that profile, I must not have IC.

            My obgyn that I saw is actually the one that is insisting that I be tested for IC. She cant do the cysto, but she said that she can do the potassium test with a catheter. I have to be honest it makes me nervous having my obgyn administer this kind of test instead of a urologist. But at this point I just want to find out why all my tests come out normal, yet my urethra feels raw!

            Comment


            • #7
              lidocaine gel is also very good for a sore urethra. You may need a prescription; there are different strengths.
              Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
              Wishing you happiness and good health, and all the best out of life.

              Peace, Carolyn
              ___________________________________________________

              Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


              On the Beach with IC

              Comment


              • #8
                MSM gel takes away the inflammation and heals. 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


                • #9
                  They also told me that anyone with IC has "extremely excrutiating" pain and that there bladder has cracks and ulcers in it and since I did not fit that profile, I must not have IC.
                  Totally untrue when they told you "anyone with IC has 'extremely excruciating' pain". There are MANY ICers who do not have "pain" in the classic sense at all. I didn't have pain - I had a huge amount of discomfort in terms of it feeling like I had a UTI 90% of the time and that it almost always felt like I had to pee. But I have never had pain.

                  I also don't have ulcers in my bladder - many of us don't. I'm confused about how would they know if your bladder had "cracks" or not if they didn't do a cysto? We aren't diagnosed by ultrasound, so they can't rule out IC by ultrasound - they could possibly rule out other conditions, but not IC. Even with an in office cysto the signs of IC aren't often seen - it is when the bladder is distended under anesthesia that the classic signs may be seen.

                  Poke around through the ICN's free online Patient Handbook at:

                  http://www.ic-network.com/handbook

                  It will tell you all about the symptoms, diagnostic procedures, self-help tips, diet, etc. That was a huge help to me in the beginning.
                  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


                  • #10
                    MSM is an over-the-counter remedy that some feel helps, but it doesn't work for everyone.

                    Since you've only had your problem for a short time, the urologists may be adopting a "wait and see" hoping your problem will resolve itself. I think if you continue to have the discomfort for very long, they will want to check it out.

                    Hang in there --- and I hope you feel better very soon.

                    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


                    • #11
                      I just wanted to let you know that I was just diagnosed with IC. My complaint is frequency/urgency (for about 6 months now). It is terrible and they were trying to rule out everything. My urologist finally decided to do a cystoscope after 4 months (and no help with overactive bladder meds). He didn't see anything that would indicate IC, but the scope was so painful that I was bawling. He said the he didn't see it, but I should talk with an IC specialist (pelvic disease clinic here). I saw the PA. She heard my symptoms and thought immediately IC. She said half of the women sent to her have doctors wondering about endometriosis. I only have pain when I am about to start my period (I went to the ER 2 times because of it). I'm now on a 3 month cycle and they are trying to reduce my pain with periods with that. I guess I have a dull ache/pressure in my pelvis when I run or am too active, but in general, no I don't have pain. My urethra is extremely painful when pressed on (pelvic exam, cystoscope, transvaginal ultrasound), but it doesn't hurt when I urinate or have to urinate. That is why they put off the IC testing for so long. I also never had blood in my urine. When I saw the specialist, I had both red blood cells and white blood cells. I said, "over a dozen urine cultures and nothing ever being there, how is it that your office can detect it?" She said that they are specifically looking for trace amounts of blood and their kits are meant to pick that up.

                      I also said that I don't have the "typical IC pain", just this "hiccup" my urethra feels which makes me feel like I have to pee all the time. She said that my bladder is feeling the pain, having a twitch, and my brain is perceiving that as the need to pee and not pain. She has seen that a lot. So, my bladder is irritated, but I only feel the need to urinate, not the pain. She also did the potassium sensitivity test and that burned like hell and I haven't had any burning pain before. It was terrible. She then gave me a lidocane flush to numb the pain I had.

                      So... I just wanted to point out that I do have it, have only frequency and pain with my periods, and it took a very specific and sensitive testing kit to ID blood in my urine. I had a culture of my urethra to rule out bacterial infection too.

                      I would look for a pelvic disease doctor or an IC specialist in your area. I called this clinic in town, described the symptoms and who referred me to them. They said the doctor had a month long wait but they said they will get me in to see the PA: who did all the testing, diagnosis, knew everything about IC, gave me a treatment plan, and wants to evaluate my symptoms as I go through the treatment. She did a few things to check for prolapse, overactive bladder, and pelvic floor dysfunctions. All those things were normal, so she went to do the potassium sensitivity test, which was strongly positive (and she doesn't have a doubt that IC is the correct diagnosis)

                      I hope this helped you! I'm not saying you have it... but I wouldn't ignore this possibility either. I have urethra pain. The cath felt like something was scratching me internally with lemon juice on it (and when I had my cysto, it burned and hurt like hell). My urethra is the problem and they hope the treatments will help it, even though the focus is the bladder. The potassium sensitivity test went into my bladder and that hurt (and that was the first time I felt pain in my bladder), but the urethra is my biggest problem.

                      Originally posted by qumar View Post
                      Thanks for all of the replies!

                      The msm gel? what exactly does it do? My family doctor had said to put cortaid(hydro-cortizone) on it to take away inflamation, but the urologist did not look thrilled with that, yet did not prescribe anything else. so i have been using cortaid for the itchy/irritation/inflamation etc...

                      Are there any other creams or gels anyone recommends for an external irritated urethra?

                      My uroligists all ruled out the cysto because they said the external urethra tissue "appeared" normal. They also told me that anyone with IC has "extremely excrutiating" pain and that there bladder has cracks and ulcers in it and since I did not fit that profile, I must not have IC.

                      My obgyn that I saw is actually the one that is insisting that I be tested for IC. She cant do the cysto, but she said that she can do the potassium test with a catheter. I have to be honest it makes me nervous having my obgyn administer this kind of test instead of a urologist. But at this point I just want to find out why all my tests come out normal, yet my urethra feels raw!
                      [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                      [

                      Comment


                      • #12
                        Urethral pain

                        Me too. The last post is exactly how I feel.
                        No bladder pain. Can even hold my urine for hours.
                        But the urgency is always there. Sometimes less, sometimes more.
                        It is probably the worst and my only really serious problem.
                        (Burn here and there but I learn how to fix it most of the time.. almost never have it now). Also cysto w/hydro negative.
                        These days they call it "urethral IC".
                        Was in remission (for no reason) for over 2 years (happy days!) that I really start doubting if it was not IC. Well it is back now. Although before the burn was the worst problem - now it is urgency.

                        THat is why I don't know why IC will be called "bladder pain syndrome"?

                        Comment


                        • #13
                          HELLO,
                          sorry to hear about the run around your having. i would get tested for ic. i too had the urgency & frequency but no pain either, but when the doc went to do my 1st cysto in the office he had a hard time getting the normal size cath in me, so he had to get a smaller one- my uretha was swollen & he said i had urethritis(a lower uti)which never show up in my urine test. & put me on a anitbiotic, which has also help alittle with the urgency- i can bare to hold it for 10-20 mins now instead of rushing to the bathroom. and then later i was dx with ic with the potassium test. and prior to that i went to my gyn for a 1 1/2 yrs with all neg. test like you. i hope you find you answer & i would go with the gyn. it's better to be tested for it than not be when that could be what you have.sounds like the gyn whats to start knocking out options. take care & hope all goes well!
                          jessica

                          Comment


                          • #14
                            qumar-

                            I had very similar feelings.....but doing the diet- no citrus, no tomato, no caffeine, no chocolate, etc. And I've been on Detrol LA for over a month now, and I feel almost like myself. :woohoo:

                            I am convinced that my urethra pain was from the over-use! I really do. As soon as the Detrol got my frequency down, I think my urethra began to heal. I just wanted to share that in case it helps.

                            Good luck to you- and be patient with drugs and diets, that's my only advice, and try not to doom yourself with IC- a positive attitude is key. Since it's a diagnosis of elimination, really open yourself to the hope that it's something else. I am so grateful that I don't have it, but I feel so much for the women on here- this kind of pain is unbelievable. Stay positive!
                            I had major surgery for a genetic rectal prolapse in Aug.05 which I believe links directly to my new Dx of....PFD! March.08. I'm working with a great PT named Zelda- I think the world of her I have the same feelings for the team at the Kaiser Center for Pelvic Pain in SF- amazing people.

                            I've had a cystoscopy, 2 cat scans, falied a potassium test and have had about 50 clean UA's.
                            This is my hot water bottle- the fish. I love him!
                            I'm also a big fan of my "Electric Fish," the TENS unit. Very helpful in a flare!

                            **I'm getting Botox next week!**
                            I take:
                            Oxybutynin 10mg
                            Elmiron 100mg 3x day
                            Gabapentin 300mg 3x day
                            Antihistamine, CystaQ, Bc, & Thyroid (125mcg) nightly


                            I've also taken:
                            Detrol LA
                            Oxybutynin patch and lower dose pill
                            Amitryptiline and Nortryptiline

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