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~New~ My Story

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  • ~New~ My Story

    Hi! I just wanted to take the time to introduce myself. I was preliminary diagnosed with IC about 5 years ago. When I woke up one morning and could not stand up straight, I had so much pain in my lower abdomen. I felt as if I had to go to the bathroom and I couldn't. It was miserable. I went to work that day, begged a laxative off of a coworker and kept trying to use the bathroom. By lunch time, I had hardly done any work at all and had just been laying in a ball on the couch all day. My coworkers told me I had to go to the hospital, (they thought maybe it was my appendix) so my boyfriend at the time came and took me to the ER, well at the ER and after quite a few tests they told me I had PID (Pelvic Inflamatory Disease) only because they could not find anything else that they thought it was. They gave me percocet and a really strong antibiotic and sent me home, with orders to see my gyno in a few days. A week goes by, I still have excruciating pain and Im almost done with the antibiotics, the gyno says okay you have this PID, lets do more antibiotics. A month I took the antibiotics and NOTHING, I still have all this pain so Im back at the gyno and they finally decide to do the potasium test to check for IC. And I remember that test like it was yesterday. I thought I would die from the burning. So they said yes you have IC. Gyno put me on Elmiron and thats it.... I just had to deal with the pain.

    I took the Elmiron for about 6 months and it did not seem to be working, and my hair was falling out in HUGE clumps so I decided to quit on my own. The Gynocologist then sent me to the most horrific UROLOGIST Ive met in my life, I did a few of the Hydro----things, and still in amazing pain. It was ridiculous. So I quit going to him after about 5 months of misery and just decided to live wiht the pain.

    I became pregnant about a year and a half later and NO MORE PAIN!!!! It was nine months of bliss and now by baby is 14 months old and the pain is back. So Im back at treatment! Im seeing the most wonderful Urologist now and we just went in and did the surgery (not sure what its called) I guess I should learn these names. But we did the surgery two weeks ago, where he fills my bladder up with liquid about 800 cc's he said and he said that I have many, many, many lesions on my bladder. So he said its not an extreme case but its pretty bad. So we will start the elmiron again after my Honeymoon(Getting married July 28) I cant risk my hair falling out. He said he will do the hydro things in July to get me through the pain, we are also managing the frequency wiht Enablex, and the pain with Lortab. And We are looking into the interstem for the frequency at a later date. So Im really happy with my doctor now! He works with me and for me!

    Sorry this was so long, thanks for reading if you got this far! I have to learn how to make a siggy now.

  • #2
    It's great that you have found a doctor who will work with you to help you feel better.

    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.

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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.

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


    • #3
      So glad you found us!

      Make sure to check out the ICN's free online Patient Handbook:

      Chock full of GREAT information about treatment, self-help, symptoms, etc.

      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