No announcement yet.

New to the IC Boards

  • Filter
  • Time
  • Show
Clear All
new posts

  • New to the IC Boards

    Hi everyone! I am new here, enjoying all of the support that seems to be going on here. I was diagnosed with IC in Nov. 2002. I've actually had this probably since the birth of my son (1st child so far) and he just turned 3. An OB GYN thought it was endometrosis so I was misdiagnosed all that time until Nov. Thank God I finally found HELP. I went to another OB GYN who diagnosed me with the IC. First question---Should I go to a urologist to be treated for this or can an OB GYN specialize with the treatment of IC. The OB GYN used a catheter and put in water and then the burning solution to determine that I had IC. Any thoughts from anyone would be appreciated. He put me on Elmiron which I am still currently taking. I will however be stopping so that my husband and I can try to have our 2nd child. I have read how some stayed on it while pregnant. Any responses? My last concern is I was put on the Pill by the 1st OB GYN who thought I had endometrosis due to the terrible pain and I just stopped taking the Pill a couple of days ago. Does taking the Pill help relieve the pain associated with IC also? Also could use some advice about painful intercourse. I've read about creams that could possibly help. It sounds like it's a heck of a time to try to get pregnant!!! Any advice I'll welcome! Thanks!

  • #2
    Hi, Suzi! hi I want to welcome you to the site and am so glad you found us!

    That is soooo cool your OB/GYN diagnosed you. It's neat to hear of other specialties being on the ball with this disease! My OB was the doc who brought up the possibility of IC to me after the birth of my second son. (If you click on the link below my name you can read more about that.)

    Hope to see you around!!! Keep posting.

    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


    • #3
      Welcome to the IC Network.

      I don't really have an answer for you about elmiron and pregnancy --- there are differing opinions from different doctors. When the studies were done prior to approval of elmiron by the FDA, there were no studies done involving pregnancy --- so no statements about safety during pregnancy are made by the drug company.

      Extra lubrication can be the key to having a sex life with little or no pain. Even if it seems there is no need for anything "extra" --- sometimes using one of the several products on the market can be very helpful.

      Sending a welcoming hug,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      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


      • #4
        SuziQzi: Cute name. Everybody here has a cute name, but me, because I didn't realize you could make something up. anyway, you know that book, Everything I need to know I learned in kindergarten, well, everything I need to know I learned HERE. You will, too. Can't help with your pregnancy questions, though, my youngest and only is 17. Welcome, I'm certain someone will have the answer to your questions. Health and hugs. angel
        mary jiminez


        • #5
          Hi Suizq and welcome to the site. I don't know the answers to pregancy or sex. I know there is alot of support and caring and loving people here on the board. It is a safe haven for me. I hope you feel better soon. Hang in there.There is hope. Sening you a gentle hug and welcome. Keep us posted on how you are doing.
          Hang in there , There is hope.
          There is hope. Prayer works.

          Love, Debbie