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I am not sure, but I am scared!

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  • I am not sure, but I am scared!

    I have a long history with UTI's dating back 18 years. I developed my first one shortly after the C-section birth of my first son. About 10 years ago I had a period of almost a year where I would have an infection about every other month. I finally asked my family doctor for a referral to a urologist. He scoped my bladder and said that my urethera had narrowed due to frequent infections so he dialted it. He also found evidence of a chronic infection. I was on different antibiotic therpay for about 3 months to clear things up. I also discussed the theory of intercorse causing the infections. I started taking a low does of antibiotic when my husband and I have intercorse and it really seemed to help until 2 weeks ago. I went to mu doctor with what I thought was an infection as I still do occasionally get a UTI. My urine was free of bacteria, but due to my past history he gave me a week of Cipro. I was feeling pretty good until 6 days later and all of my symptoms returned. I went back and my urine again showed no bacteria. He said he could do nothing more for me as I had already taken an antibiotc and said that it could be that my pelvic floor muscles were tightening up due to stress. I do not buy this as the last 5 months my life has not had any more stress that what I usually have. I took it upon myself to contact the urologist I saw in the past and was able to get an appointment for the 2 of April.

    I have pain in the bladder area and pressure as if I still have to pee even after I have gone. I notice that it is worse at night when I lay down to go to sleep. Of course with these symptoms I have not had a good nights sleep lately. I usually lay in the recliner with a heating pad to take some of the pain and pressure away. The pain is not excruiating, but is uncomfortable. I have not noticed any pain with intercourse until last weekend. I really hurt afterword.

    I have also had something else starnge for the last few years. Every once in awhile when I am urinating it will be like everything just closes up and I have a hard time finishing. I then have an awful sharp pain in my urthera as if it was twisting up. I have also had periods of retal pressure and pain. Sometimes it helps to go and sit on the toilet and bear down as if I were having a bowel movement. The pain can last over an hour at times. I have never sought medical attention for this as it comes so infrequently that I tend to forget in between. I have had a couple bouts with the rectal pain in the last week.

    Does any of this sound like IC? What should I ask my urologist when I go to my appointment? What can I expect at the appointment? I have had a cysto before when I had the chronic infection and I remeber that even though they used numbing gel it was painful and I felt like crap for the rest of the day.

    I am so scared that I may have IC and I have read many of your stories. It siunds like it can be horrible and it makes me want to cry just thinking about what may be happening to me. I am 38 and have been relatively healthy. I had a few bouts with pelvic pain due to adhesions from both of my C-sections. Once they were burnt off I was back to normal. I have a job that I love and it usually does not have a lot of undue stress involved. I am taking part time classes to get my BA in social work.

    Any replies or suggestions would be greatly appreciated.

  • #2
    I hope that you don't have IC, but if you do, I am glad that you found us. This site has definitely helped me and still does. Your symptoms sound quite familiar, so read as much as you can and see if your doctor knows about IC. There are some tests that the doctor can do to find out for sure.

    Check out the IC diet and see if following it helps out with your pain and frequency.

    Happy thoughts to you!


    • #3
      I am NO doctor but you do have the symtoms of IC also it sounds like you might have PFD pelvic floor dysfunction..I would go get a second opinion, if your doctor just thinks its PFD..
      I know I have PFD and IC and I have all the symtoms you just explained..When my PFD is acting up I always feel like I have to pee even if I have just went and when I do go, its a very slow and weak stream...Well good luck!

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

      Link to Patient Handbook:

      Diet Reference Sheet:

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


      • #4
        It does sound like IC is a possibility. I suggest you mention it to your uro.

        Stay safe

        Elmiron Eye Disease Information Center -
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        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


        • #5
          HI! I'm sure your symptoms sound familiar to all of us here, they do to me. The pressure, the pain, the 'sitting on the toilet because it feels better sitting there'......ugh!!! I hope you don't have IC......but Tracy is've come to the right place.
          I hope you can find a great dr who can diagnosis you (some do it by tests and some by the symptoms you are having) and give you the right meds (probably Elmiron maybe Elavil....or several others) to help you. Getting on the IC diet and sticking with it helps too.
          IC isn't fun but you can live with it with the right meds.....and friends to lean on. Good luck to 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's amazing stuff!!:woohoo: