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Diagnosed last week, need help talking to my Dr.

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  • Diagnosed last week, need help talking to my Dr.

    After 5 months of attempting to medicate a recurring UTI, I was diagnosed a week ago with IC. From meandering around the site (thank you so, so much!) it appears I'm a prime candidate, having begun with a UTI, taking a bad fall off a horse, and living off soda, coffee, candy, margaritas, and anything I can microwave. Now, I'm having difficulty accepting, for several reasons.
    Firstly, my PCP has been a huge letdown right from the beginning. Over the course of five months, I have visited her 4 - 5x, of which I think I've seen her for five minutes, total. She never did an exam. They recommended bloodwork after I insisted on a urine culture, thinking I might be diabetic, at which point I realized they had lost my file, as I had had bloodwork less than a year prior. It's been very, very trying working with my PCP. Then after a few rounds of a sulfa drug, Cipro, and Amoxi, I always ended up with a yeast infection. After the most recent urinalysis, I waited for 45 minutes to describe my symptoms to the nurse, then was sent home, at which point I received a letter three days later recommending a urologist of their choice, of course, male.
    What I learned last week is that I absolutely cannot manage a male urologist, and that I have IC. What my primary concern is that the day prior to my visit to the uro, I had taken a second dose Diflucan for the yeast I just can't get rid of. Then per usual, 5 days after, the yeast symptoms returned, and I called my PCP begging for another Diflucan. I feel like my visit to the urologist wasn't nearly as productive as I would have liked, and not nearly enough for me to figure out how to manage IC.
    I've been following the diet to the letter, with the exception of a 1/4 can of ginger ale Sunday (I dumped the rest). My symptoms have been consistently getting worse since my visit. The initial reason for the visit was pain (for 5 months) at what I would consider the opening of my urethra (I had to google that just now, I wouldn't have been able to explain where the pain was coming from to my uro last week). So I scheduled an appointment with a gyno, as that was really the only symptom I was having. Now, I have lower back pain/abdominal pain x 2 days, but while it seems to be worse immediately after I urinate, my appetite has been horrible, and I think it would be possible that it's gastrointestinal.
    My other concern is that I'm wondering if it's really possible to diagnose IC based on a physical exam and my pathetic attempt to describe symptoms while the only thing I'm thinking is "oh my god, this old dude is going to poke around in my thing." I also have no problem holding urine - quite the contrary. I can manage without urinating during my entire work day, no matter how long it lasts, although the urgency is always there (seems to be urethra-based rather than bladder).
    My plan now is to visit my gyno about this stupid yeast infection, and schedule an appointment with a female urologist. But I feel like I've had to take this entire thing in to my own hands, and I really feel like I need to know what I should be asking for, or if I even should be asking for anything in terms of diagnostics.

    That sounds like an enormous rant, and I'm feel like I really need to just accept it, snuggle up with my heating pad and my 24yo teddy bear, and cry for a few more days, and that's fine. But any suggestions would be dearly appreciated.

  • #2
    HI Sarah... sorry to hear about your ordeal! I am also new here, but I thought to make a small recommendation that maybe you make an appointment with a 'urogynecologist'. If you don't feel like you've had an adequate pelvic exam, a urogynecologist is familiar with gyne issues and urology issues and can adequately diagnose this condition if its what you have...


    • #3
      You sound like me 6 weeks ago when I didn't quite know what was happening to me other than pain in pelvis and peeing every 20 minutes. since then, 2 urologists (no help) simple cystoscopy, cat scan of pelvis and abdomen; urodynamics- nothing. The first urologist wanted me to wait 5 weeks to get any tests.....he is very busy....wouldn't give me anything for the bye bye to him. Now the neurologists (2) nothing wrong. The GYN says sounds like IC. So I say what the heck is that? Well I spent the past 4 weeks learning about what I supposedly have and never heard of. So far I have the diet strict, scared to touch anything other than the safe foods. I tried elavil (heart Palps), Immiprine (heart palps) Gelnique Gel for frequency....doesn't do anything.The only thing that keeps me calm is Xanax. I bought Cystoprotek from the ICNetwork. Idon't know if they help. Ice bag helps when I get spasms underneath. Oh and vicodan which I got from the nice old doctor at the ER when I first started out. He was the only one so far that was compassionate. Our healthcare system in the US sucks and its not going to get any better with Obamacare or whatever you call it. I wish you luck with your doctors. My next stop (the twilight zone) no just kidding. I have an appointment with a Urogynocologist in November. She is supposed to be very good. I have noticed the more anxious I get the worse the symptoms get.


      • #4
        It sounds like me 2 and a half years ago, the pain felt most of the time like my urethra. For me it ended up being Vestibulodynia. Its a nerve dysfunction in the skin between your vaginal opening and urethra - that is what I was describing as "urethral pain". I almost cried when he told me what it was. Go see a Urogynecologist! I went to a Uro who was absolutely a horrible, horrible man. Then I decided to try out a Urogynecologist at the urging of my Pain Management doctor and I am so glad she told me about him. I didn't even know they existed and he is wonderful. This exact type of problem is what a Urogynecologist specializes in. He told me it is very common to see IC and Vestibulodynia occur together.


        • #5
          Hi Sarah,

          I'm so sorry that you've been having such a difficult time.

          You mention several rounds of Diflucan with symptoms continually returning. I went through about a year of this some time ago. My repeated "yeast" infections ended up being an allergic reaction to my laundry detergent. Or rather any laundry detergent with dye or perfume. Maybe switching your laundry and/or personal hygiene products will help? Just food for thought....

          Hope you are able to find help soon


          • #6
            Thank you!

            Thanks everyone. I did visit the Gyno today, who started me on Doxy and recommended switching to sensitive skin/free detergents and soaps. She did test for yeast, but no such luck. We'll see what the Doxy does. I'm having difficulty finding a female Uro in my area who takes my insurance, but I think it'll be worth any amount of driving. I've never heard of a urogyno - sounds fabulous!
            Again, thank you


            • #7
              You have been given a lot of good info from the others, I just wanted to share a few things with you as well. I was the same way you are describing. I always had urgency (still do to a degree) but I could "hold" it forever. I knew I couldn't go and knew that it was bad to push so I just wouldn't even try to pee. I was absolutely convinced my pain was in my urethra, I swore by it. On a visit to my uro he did an exam and touched my bladder, I screamed and almost jumped off the table. I told him that is where it hurts (like he didn't get that from my reaction!) I was shocked when he said that was my bladder. Just proving that it can be very hard to identify where the pain is coming from. Not saying that is the case with you, just sharing my experience. I saw a urogyne for a while and he helped me all he could. Then I found another urologist that is awesome and have been there ever since.

              It is very frustrating in the beginning with all the tests and no answers. I am sure you have read that IC is a diagnosis of exclusion and it is important to rule out the other possible causes of your symptoms. My Dr's explained to me why the didn't want to give me any pain meds in the beginning because they could cause a false read on tests by masking my symptoms. I didn't like it but I understood. It was agony.

              I hope you find relief and answers soon.
              Link to the patient information, everything from What is IC? to Disability

              American Urological Association Clinical Guideline
              Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


              • #8
                sailawygirl makes a very good point. I was sure my pain was my urethra when in reality it is the skin right around my vagina - I found out the same way she did - my doctor lightly touched that area with a Q-tip and I jumped. He demonstrated afterwards how soft the touch had been (on my hand) and I was blown away! It felt like he had jabbed me! I'm like you, I had never known there was such a thing as a Urogynecologist - I am so thankful for someone telling me. I just wish I hadn't wasted so much time with a Uro just because he was local.


                • #9
                  Oh Digg, I am new too and can realte. Although I have suffered with this for 19 months dgloing on the "slap-all" label of OBS, and have been taking the wrong meds )believe me, a ton of them) with really no relief. You are right about being VERY specfic about having Pelvic pain, and I too, never have the UTI symtpoms or really anything urinary deal, other than I always thought it was normal to have to urinate all the time, frequently. It never hurt, but the relief afterwards was absolutely incredible. Now that the pain is at a 10+++ for many months, I am having to decide what treatment, and all that it involves. I had asked earlier about Elmiron, but this site is so huge, I get lost- lol
                  I am wishing you the best and just be assertive and if you want a female uro/gyne, you can insist upon that, as long as it's within reasonable reach of where and far you can travel. That's why I live 5 min from my job. Whew, blessing in disguise. Take Care and don't give up!


                  • #10
                    For trouble talking to the doctor--- write all your symptoms down. Better yet, type them and try not to ramble, but be very specific.

                    For treating IC, I recommend a multi-faceted approach:
                    1. Block the nerve pain. There are several drugs that do this- Neurontin (Gabapentin), Lyrica, Elavil (amitryptilline).I believe amitryptilline is the only one that research shows will help IC, but I haven't found studies with the other drugs--they probably work.
                    2. Take Elmiron. This substance coats the bladder
                    3. Take a histamine 1 blocker such as Benadryl or Vistaril or a histamine 2 blocker such as cimetidine or Zantac(ranitidine). This blocks degranulation of the mast cells that many researchers believe causes IC
                    4.Follow the IC diet strictly
                    5. Go to a pelvic physical therapist or purchase "Ending female pain" which you can purchase on this website and do your own therapy.
                    6. Get narcotic pain medication to take when needed
                    7. Try instills with lidocaine, heparin, or DMSO- be sure a small catheter is used
                    8. Be patient!!! It probably took years for your bladder to get sick, it will take a while to get better--- but you will get better !!!!


                    • #11
                      Thank You

                      Barbm, I found your post very insightful and I truly apprecaite the info, input, advice and opinion etc., especially that I have been treated with IBS for 19 months without relief. I saw a uro last week and the procedure was booked asap. That told me something. In particular the pain level.

                      This will help me as you mentioned to be question specific for the next Dr, visit.. I for one, get nervous in the office and forget pertinent questions. I will be having to undergo the cycsto-hydrodistention in another week and it really makes me nervous.

                      Thank you again for your post.


                      • #12
                        Hi I like the way you list the treatments. I tried elavil and it really helped the pain but gave me heart palps that were just too annoying to continue and thus the pain returned. Same thing happened with Imapramine. I am nervous about Neurontin because I heard it can blow you up. Also, Elmiron has a blood thinner. I am nervous about nose bleeds as I suffer from rhinitis in the fall and winter. Any thoughts on how much of a blood thinner this is? thanks