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  • #1

    Would welcome feedback- new to IC

    I was diagnosed a month and a half ago with IC. I have experienced TREMENDOUS pain for 8 months. For a very long time I thought I was experiencing some type of female problem. After having numerous tests, my Ob/gyn found nothing and I then continued to look for answers with my PCP. He suggested checking for problems in my back, following an MRI the neurologist did not feel it was the problem. He suggested a urologist. so glad for that suggestion. Had a biopsy, told I had IC, given very little support. Had to wait lengthy amounts of time for appts. Now using a close friend who is a gyn. She is so kind and understanding. I received 5 instillations but continued to have lots of pain. Discovered I had a UTI. The new dr. says I also have Congestive Pelvic Syndrome and adenomyosis, which the other gyn. disagrees with. I am seeing a third dr. next week to schedule a laporoscopy. This pain is very confusing, because I do not know exactly where it is coming from. The bladder is so difficult to understand for me. This forum helps greatly and I would sincerely appreciate any ideas, suggestions, opinions.

    My favorite saying that keeps me going: "Wait on the Lord, be of good courage and He shall strengthen thine heart."

    Gretchen Rideout
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  • #2
    My suggestion is to see a different urologist --- if you scroll to the top of this page and click on Professionals, you may find one in your area who has been recommended by other IC patients.

    Are you following an IC diet? That can be very important.

    I hope you feel better soon.

    Warm welcoming hugs,
    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

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    • #3
      Please respond...

      Thank you for the prompt reply. Yes I am following the IC diet, how long should you wait before you begin adding foods back to your diet? I had one pain free day yesterday, that is one day - in 8 months. Should I attribute that to the elmiron? Or luck?

      Again I am not sure if I should attribute all this severe pain to IC. How am I to know if this pain is at all female related? I have an appt. next week to discuss this with a gyn. Dr. I don't know how much experience he will have with IC and shall I procede with a laproscopy? I don't think it will be out of the questions considering my current dr. thinks it would be a good idea. What is your opinion on using a urogynecologist? I live in a large town but the nearest one is several hours away and would be difficult to receive treatment. In addition I believe the better urologists are also a couple of hours away. We only have 2 urologists and I was very disappointed in their care, concern, had to wait several months just to get the biopsy scheduled, another week for a follow up, upon which I never saw the doctor.

      This disease has been so trying on myself and my family. I had to cancel my first cruise ever to celebrate my 25th wedding anniversary last week. This is a very sad time for me. I am a second grade teacher and the school year was very difficult. I love my students and they definitely knew the pain I was in- I was not able to be the teacher they deserve, leaving the classroom to use the restroom, turning my head away when I just couldn't hold the pain in...I worry about how I will do this next school yr. I so desperately want to be happy and pain free!

      I know that you must be busy with words of advice, but if you could take the time to respond to this letter, it would be so much appreciated.

      Sincerely,
      Gretchen

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      • #4
        I have had pelvic pain for as long as I can remember, been through the whole gambit like you but over a period of years not months.

        Congestive Pelvic Syndrome is an old term not used much any more, not too sure what it means, years ago I was told that's what I had, and was given diuretics to take.

        I was diagnosed with Adenomyosis for sure and had a hysto 10 years ago, my gyno at the time said this will help with some of your pain but he was not sure it would deal with all of my pain. He was right and it helped a whole lot having the hysto, but I still considerable pain, which eventually turned out to be from IC and urinary retention.

        Good luck MG
        My are with you all. May you all find a way to peace and joy in your lives.

        Comment

        • #5
          Gretchen,
          I can feel your pain and frustration just reading your posts. First, you are in the right place for advice, venting, and support.
          Second, it seems to me that so many people with IC have other conditions as well... IBS, endometriosis, other "pelvic" conditions.
          Third, like the PP said, you really should look at getting another Uro. I know it's hard to keep starting all over with new Dr's, but once you find the right one's, it will be worth all that work!
          Like many others, I had referral after referral trying to get someone to figure out what was wrong with me. What was causing all this pain?! And, one by one, each new diagnosis offered support and pain relief. But, I still get confused... not knowing what is actually hurting. When that happens, I first look at my monthly cycle and see if the pain is related to hormones. If not, I cut way back to a very simple totally safe diet. Then, I have rescue meds I can take at home. If I'm still in pain, I go with my gut and start calling Dr's. Once you are an established patient, you can usually explain the situation to the nurse and the Dr may not have to "see" you to help you. Don't feel bad about "bugging" the Dr. They are there to help you.
          Our disease(s) are complicated. Everyone is different. It will take time to get it all figured out, and likely, it will change on you. That may sound discouraging but, truly, it does get easier. You are in the right place to start!

          I would start by very closely examining your diet. Look at every single ingredient in every thing you eat. Start a food journal. Write everything down, and write down your pain, and your hormonal notes too. It took me weeks to figure out I was very sensitive to baking powder. I also found out hardly anyone else is bothered by it. We are all different.

          Good luck and I hope you find some relief soon!
          Renee

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