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Frustrated with doctors who can't decide...

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  • Frustrated with doctors who can't decide...

    Hi everyone,

    My name is Seu (seu-seu to friends and family) and my most recent nightmare began 14 months ago with severe pain in the lower right quadrant of my belly. Long story short, we were finally able to identify active crohn's disease in my colon and get that into remission... but I was still in severe pain. (I quit my job in july 2006 and therefore am living off savings and a very understanding hubby and family.) I am taking oxycontin 40 mg at bkft, lunch, dinner and am still in constant pain.

    After seeing what felt like a million doctors, I met a uro-gynecologist who, from my symptoms, felt strongly that I had IC and possibly endometriosis as well as the crohns. After my husband found me crying in a ball on the bathroom floor, he convinced her to look inside my bladder, my uterus, my tubes, and to go into my belly laparascopically (last thurs).

    She removed some adhesions, and said she didn't see anything else, that my bladder didn't look too bad, but that I did have lesions all over my body (which a prev dr had told me were acne) and she felt everything was caused by glucose intolerance.

    I had read on this site, and elsewhere, that the disease wasn't always obvious from bladder pictures in the beginning.... and my picture looked to me like a really irritated eyeball.... and my pain is not subsiding at all, even though I've had no gluten in my diet for almost a week now. Does anyone have any advice for me? I'm so confused and sick of being in pain. And I can't think straight on the darn pain meds!!!!

    I used to be athletic, yet all I can handle these days is sitting in the tub or if I'm lucky on the couch. Being in a car stinks, I can't make it through a normal grocery shopping trip, I've struggled with depression since I was 19 (I'm not 36) and there are too many days when I feel that there's no hope, so why bother. I was holding out for some sort of answer from this surgery but it doesn't seem like she cares since she didn't find anything exotic....

    Is there anywhere I can look at other photos for ic? Is it always obvious from the photos? Ack! Any thoughts would be greatly appreciated!!
    Thanks for any light any one can shed....??

  • #2

    I am so sorry that you are going through so much pain and on top of that, you don't have a doctor that seems interested in finding out the source of your pain. Have you considered maybe getting a second opinion from a urologist that specializes in IC? That might be a first good step to find out if what you have really is IC and if not, what in the world is it?

    I am not certain, someone else probably knows better, but I think there might be some pictures in the Patient Handbook on this site. Also, take a look at the IC diet in the Handbook. Maybe you should give that a try and see if you have any improvement in your symptoms. There is a wealth of information in the handbook, it's a great resource to you.

    I wish you luck in your journey to a diagnosis. Hopefully you can find out soon what is causing all your pain. I totally understand that sometimes you feel like giving up, but it appears that you have a wonderful husband that is on your side 100% and he's not giving up on you, so you can't give up on yourself. It's definitely frustrating when we're in pain and don't know why, but never feel like it's time to give up! If you continue to feel this way, you might want to talk to a therapist as well. There is no shame in asking for help because you feel depressed or overwhelmed.

    I hope you feel better soon!!


    "A heart is not judged by how much you love; but by how much you are loved by others."
    ~ The Wizard of Oz

    "If I ever go looking for my heart's desire again, I won't look any further than my own
    back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


    • #3
      Thank you,Claudia

      Thank you! My husband wants us to find a specialist as well (he is wonderful, and I hope that from your pictures it shows that you have someone wonderful as well!). And it means so much to me that you, as well as others who don't know me, are willing to share and support...


      • #4
        Yes, thankfully, I DO have someone amazing to stand by my side in all this mess! My husband is so supportive and it's great that yours is, too. No matter what your diagnosis, there will be ups and downs and having someone to love and support you, whether it's a husband, best friend, or family member, means so much.

        At the same time, it's really nice to come here to the boards and "talk" to people that truly understand what you are going through. Even if you don't have IC, you certainly have some type of chronic pain, and we are all too familiar with that! Getting a good doc is key to a proper diagnosis and treatment following.

        Check out the rest of the boards, too, if you have time. You will find many categories, from meds and treatment options to relationship chat to tv and movie chat! While IC is a big part of all of our lives, we try to remember that there is so much more to each of us as well!


        "A heart is not judged by how much you love; but by how much you are loved by others."
        ~ The Wizard of Oz

        "If I ever go looking for my heart's desire again, I won't look any further than my own
        back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


        • #5
          Hi Seu,

          This is a link to a page with IC bladder photos:

          I don't know if IC is always obvious. Seems like I've read of some people's not showing it one time, only to have their IC obvious in the next photo.

          I know how frustrating it is when you have something wrong and can't seem to get any answers. I'd go into each doctor visit so hopeful, and leave no closer to finding a solution (if there was one) to my problem! Some times I'd just sit in the parking lot afterwards and cry! It took me many years and more doctors than I can count to be diagnosed. All I can say is don't give up.

          "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


          • #6
            An IC bladder can look completely healthy and normal until it is stretched during a hydrodistention. I know mine did. When mine was distended, the pinpoint bleeding and ulcers became visible.

            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


            • #7
              I've never had a cysto without hydrodistention -- but I do know when my bladder was distended it looked like such a mess that my urologist at the time (but I'm no longer seeing) came out of the OR, knelt in front of my husband, and said we had a long road ahead of us, because my bladder held 600ml under anesthesia, but he'd be surprised if I could hold only 90cc while I was awake... my bladder was a huge mess. He was also "anti-pain med" but he gave me Percocet after that procedure (which he never did) knowing I was going to HURT.

              You may want to go ahead and try to get the distention as that is when IC can really rear its ugly head. But, even if your bladder looks fairly normal, if you have IC symptoms a good doctor should treat you for IC for a while to see if it helps... we have several members who responded well to this and are considered to have IC despite a normal cysto/hydro.

              I'm sorry you've been going through all of this... The IC road IS indeed long like my first urologist said, but do not give up. There is something out there that's going to make you feel better. You're going to find it!

              *Diagnosed with severe IC in 2004
              *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
              *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
              *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

              **I am not a medical authority nor do I offer definitive medical advice. 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.


              • #8
                Hi Seu,

                I can understand your frustration very well. I have had 3 cysto/hydros by three different docs. All were a little different as to the number of pinpoint bleeding spots. The first showed numerous, the second showed a little less, and this last one showed minimal. (I have been on elmiron for almost 31/2 yrs so maybe that it does work in some cases since my bladder has improved.) I also have an unusually large capacity. My doc says this is unusual but not impossible in IC so it is very well that you just need to find the right doc to diagnose you. Definitely find someone that specializes in IC or pelvic pain.
                Please don't give up until you have the answers to your pain. I have seen many docs and experienced much frustration during the last four years. I wanted to give up like you but my husband encouraged me to see my current doc. Also, I have often found encouragement on this board. It helps me to know that I am not alone.


                • #9
                  potassium sensitivity test

                  It might be a good idea for you to find an urologist that specializes in IC. You could see if they would do a potassium sensitivity test. That is how I was diagnosed (along with my history, symptoms, and other findings on exam). Good luck.


                  • #10
                    I am sorry to hear about your frustration & pain, have you tried one of the doctors on the ICN or call the ICA for recommendations? Also I was diagnosed with the Cystoscopy & Hydroinstention under general anesthesia, outpatient procedure.

                    It's always a good idea to get more than one opinion.
                    [FONT="Comic Sans MS"]
                    Medically diagnosed Post Menopause 9-13, unsure for how long! Have: IC, IBS-C, arthritis, carpal tunnel, hypoglycemia, RLS, seasonal sinusitis, depression, anxiety, infertility, hormone imbalance.

                    Please read Screaming to be heard by Dr. Elizabeth Vliet. I do deep cleansing breathing & relaxation morning & night along with doing Yoga everynight now, it's been a huge blessing for my body! Born & raised in Michigan, relocated to Oklahoma in 9/09. Please Don't stop anti depressants or mood stabilizers "cold turkey"!


                    Jen Meier Cascaddan on Facebook

                    Married for 21 years, have 2 cats that are my "boys"


                    • #11
                      Lots of great info...

                      Wow! After looking through the emails, and talking with my hubby and family, we're going to try and find a specialist at the hospital where my Crohn's doctor is (Dartmouth Hitchcock is one of the best within a reasonable driving distance) and I've just gotten an appointment with the pain management clinic there with someone who specializes in Crohn's and other abdominal pain issues (yay!).

                      I'm not certain if my cysto test was done with or without hydrodistention, but I also go to see her today (finally) for my surgical follow up and I plan to discuss all of this with her - she's a uro / gyno doctor.

                      Thanks so much for the support - my husband and family try to understand (my best friend has just decided to avoid me I think) but it's hard to explain the pain and exhaustion. Knowing that whether I have IC, or something else, that there are other strong role models out there for me is important!!