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Scraped Urethra After Instalation Please Help

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  • Scraped Urethra After Instalation Please Help

    Hi! I was just wondering if anyone has any advice for me. I'm not really sure if I have IC or not. My doctors are in disagreement too. I started having pain on the bladder and urinary frequency in April, 2012. A urologist did a cystoscopy and found nothing. After 3 months of continous antibiotics for a "UTI" that never showed up on a culture a gynecologist opened me up and found stage 4 endometriosis. He found some on my bladder which he laser ablated. I continued to be in terrible pain. It took me 5 more months, after Lupron and bladder installations and so many doctors I can't count, to find a doctor who told me I had the wrong surgery and endometriosis needs to be excised not ablated because ablation only takes the tops off of endo and leaves the root. This surgeon performed another surgey and sure enough the bladder endo was in the same exact spot, except with scar tissue now covering it. At this time, December 2012, my surgeon did another cystoscopy because I was being treated for IC but not sure if I really had it, he found nothing. He removed the endo and I no longer had any bladder pain. I then developed a large cyst on my left ovary and went to just have my left ovary removed when I was told my uterus was soft and I would need another surgery down the road if I didn't do a hysterectemy and I would continue to have pain. This was so hard for me because I don't have kids and I want them so bad. I love kids, I am a teacher and I am getting married in August, but I had the hysterectemy because I just can't deal with the pain and emotional toll anymore. I was doing pretty good after surgery, but I started feeling a little like I was having urinary frequency again so I went back in for bladder installations. The first one went great and I was feeling really good on the second one when the nurse practitioner scraped the left side of my urethra with the catheter. I felt it happen right when she inserted it and now I have had a burning pain in my urethra for 4 weeks now. It is constant and worse after I pee. They put me on Cipro for a few days but nothing happened, then on flavoxate to calm my urethra down, but it is not working. I also want to mention I do have pelvic floor dysfunction too and I am involved in therapy on a daily basis. The urethra pain is bad and seems to be getting worse. It is a burning pain, and I have never had that on the inside of my bladder before. I have tried talking to the nurse practioner and the urogyno about this, but they tell me it is just IC in the urethra and if she did scrape me it would be healed by now. Please, if anyone has any help I would so appreciate it. I am so sad and worried about not being able to celebrate my upcoming wedding.
    Last edited by Meri; 06-26-2013, 03:45 AM.

  • #2
    There is no way I can know what you have but I can say that my main symptom is severe urethra pain. One of many reasons I know my problem is IC is that it responds unfavorably to about a zillion different foods. Plus, I am diagnosed.

    If I were you I really get a good doctor no matter how far you have to go to find one. I'm considering going to another state if that is what it takes.

    People with IC can't fool around with Doctors who don't know the issues and how to best treat them.

    There is teaching advice here for sexual issues, you might want to read those. I use lidocaine jelly Rx that numbs skin. I used to only use it afterward but now I'm using it beforehand.


    • #3
      to the IC Network.

      You have been through a lot. I'm so very sorry you had to have the hysterectomy. A cystoscopy done in the doctor's office without anesthesia will not always diagnose IC --- when I first had this done, my bladder appeared to be healthy and normal. When my bladder was over-distended during a hydrodistention in a hospital operating room, the IC showed its ugly self.

      I hope you'll feel better soon.

      Sending gentle hugs,
      Stay safe

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      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.

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      • #4
        Dear Clevsea,
        Thank you for the information. I will get some lidocaine jelly and look into the advice.


        • #5
          Dear Donna,
          Thank you for your reply. I will talk to the doctor about this. I was under when they did the cystoscopy. Thanks for always responding to people. I have read a lot of your posts and it is helpful.