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Recently diagnosed and extremely frustrated

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  • Recently diagnosed and extremely frustrated

    I was diagnosed with IC about two months ago after a year of misdiagnoses and lots of pain. My urologist has put me on Prosed and at first it worked really well, along with installations. But the last week has been miserable and I'm in a lot of pain. Should I be concerned that my doctor hasn't mentioned any other medications or given me anything or the pain? I'm trying not to get negative about this but at this point it's really hard. Looking for any help or suggestions possible!

  • #2
    Can you call the doctor and say that you are suddenly in a lot of pain again? Maybe they'll try the meds now since the other things aren't working. Perhaps they'll call in a prescription if you have been seen recently.

    There are great suggestions here on this site for emergencies such as taking tums (for me it takes the edge off a little...sometimes), Prelief, diet changes, heating pads, etc...
    Frances

    Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

    Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

    Other conditions: Migraines, allergies, mild IBS.


    "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

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    • #3
      I tried calling with no luck but I'm going in again tomorrow so hopefully I'll get some answers to my questions. Thanks for your response!

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      • #4
        If you have time, let us know what happens. Good luck!
        Frances

        Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

        Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

        Other conditions: Migraines, allergies, mild IBS.


        "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

        Comment


        • #5
          I figured I would give you a welcome first of all. I am a male, by the way. I was still diagnosed with IC back in 1997. Yep! None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. I have never had installations, but many IC'ers do try Elmiron. Also, some will ask if you have seen the "IC diet" so far. I will state it is not unusual to feel frustrated, negative, lost, alone, and even confused once diagnosed with a chronic illness. By the way, I definitely felt lost back in the late 90's. (or for a while) Besides, it was still being called a womans disease as well.

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          • #6
            I understand how you feel.

            I understand how you feel. I'm newly diagnosed too, and trying to find the right doctor. After being with my current doctor and urologist for over 4 years, I've come to realize that doctors are just human beings and don't always make the right call...especially with a disorder like IC. Thanks to ICN, I've started to take a much more active role in my health care, and in a way I find that it helps me cope. It doesn't make the pain go away, but it makes me feel like I'm at least doing something proactive; it gives me hope. Have you joined a support group in your area or connected with other patients? It might help to talk to people familiar with health providers in your area who are experienced with different treatments.

            One other thing - my urologist hasn't done anything for the pain too; I'm in the same boat. She gives me pyridium, which is like putting a band-aid on a broken arm: it doesn't help. We have a right to be concerned about this. The American Urological Association recently published guidelines, "DIAGNOSIS AND TREATMENT OF INTERSTITIAL CYSTITIS/BLADDER PAIN ," that say pain management should be part of the treatment plan. Google for it, and bring it to your doctor. See what he or she says. As for me, I called my primary care physician, armed with info on pain doctors that my insurance provider approves. I'm going to ask her to refer me to a pain specialist who has experience with chronic pelvic pain and bladder disorders. Wish me luck.
            Last edited by Krissy83; 08-15-2011, 02:47 PM. Reason: note on pain management

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            • #7
              Went to the doctor today and am now on Elmiron as well as got another installation. Hopefully the Elmiron will start to help, I think the part I'm having the hardest time with is pain management. My doctor suggested physical therapy, has anyone had any luck with that? This site has already helped me so much, it's so nice to know I'm not alone and to hear other success stories!

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              • #8
                Yes, some ICers are helped by physical therapy. Elmiron can take up to six months or longer to become effective so you may need other alternatives in the meantime.

                Are you following an IC diet? If not, I suggest you begin today. You'll find the latest food list at the link in my signature below.

                I hope your today is better.

                Sending gentle 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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                • #9
                  Hope you feel some relief soon.

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                  • #10
                    Welcome! Sorry we had to meet like this... My first thought with your sudden increase in pain is that maybe you have a bladder infection. That can happen when getting instillations sometimes. I have done physical therapy a couple of different times and kind of out grew them. I do the exercises at home myself now as needed. I do see a pain management doctor and I got the interstim. Both of these were after I exhausted all other treatments. Both are HUGE decisions. If you have any questions please feel free to ask. We are all here to help each other and YOU! Another popular medication is an antihistimine called Atarax that a lot of docs use first off. It will make you very sleepy though so be careful if you try it. Treating IC is really trial and error... you just keep trying things until something helps. I'm so sorry you have this but trust me when I say that it is wonderful to talk to other people who know exactly how you feel!
                    Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
                    _____________________________

                    DX: IC - November 2002 after hysterectomy
                    Interstim implanted March 2006 - died May 2011
                    Interstim replacement June 2011
                    Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
                    Docs: Pain management doc, urologist, family practice

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