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I'm new and overwhelmed!

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  • I'm new and overwhelmed!

    Here's my story: A little over 5 months ago, I started having burning in my urethra and my bladder "ached." I don't have any frequency issues and I'm not sure if the pain/ache of my bladder constitutes urgency. I don't feel like my bladder is full, that's a different feeling for me, but I can always just feel my bladder aching. My PCP originally treated me for a UTI and when the pain didn't go away after antibiotics, she sent me for an ultrasound, CTScan and blood work to make sure there wasn't anything else going on. During all of this I also started getting pretty severe pain in my lower back that got really intense after having my morning coffee and some other foods and drinks. When all the other tests came back clear, she told me she suspected IC and referred me to a Urologist.
    The Urologist I met with didn't want to discuss IC and told me that sometimes bladders can just be "funky" and he put me on Vesicare and told me to come back in 6 weeks. The Vesicare didn't help and at my follow up, he seemed more annoyed than helpful. So I made the decision to switch to another Urologist.
    That's where I am now. My appointment with the new urologist is in a week and I am really hoping that this one is better than the last.
    I've been trying to stick with the IC diet, but I am finding it hard because I also have to cook for my 2 yr old and my husband and I want to make sure that they are getting nutritious meals for them too.
    The pain gets a lot worse at night, so my PCP told me to take Tylenol PM until I can meet with the new urologist. I can usually stay asleep for most of the night unless something else wakes me up. But if I do wake up, I have to go to the bathroom because when my bladder is that full, it does hurt more.
    I just feel so overwhelmed to not have any answers, but this site has been pretty helpful so far.


  • #2
    My story is almost identical to yours! about 4 months ago I developed worse symptoms and my dr. treated me for UTI and it didn't help to be treated. I did have my first appt with a neurolist last thurs. and he was good. I am glad you found a new one. I am having cystology this Friday to find out if I do have IC or not.

    My symptoms are worse at night as well. Before I fall asleep I usually have to go 3-4 times and during the day I might go once an hour. My bladder is super sensitive when it is full of any amount of water which is soo annoying!!

    I hope you will get the relief and this new neurologist is helpful with treating you! The IC diet has really helped me a lot! I stick to it almost 100%.
    -Pammylynn Rose
    Wishing everyone a pain free bladder day!

    Painful symptoms start in May 2011
    Diagnosed with IC in Aug 2011

    Axert (only for rare migraines)
    Strict IC diet
    Gluten/dairy/egg free diet


    • #3
      I'm glad you're getting a second opinion. Today I met with my pcp and told him how I'm getting a second opinion. He agreed with my decision and said an IC diagnosis is "serious" and not to be taken lightly. If you have a doctor who is not helping you well, keep looking around. I have an appt. on Wednesday with a doctor in Cambridge. I can recommend her to you if yours doesn't work out. (provided that she works out for me) The doctor I'm seeing is a Urogynecologist and is one recommended by this site and by my pcp. Let me know if you need more info.

      Are you drinking late at night. As for me, I noticed I often do better if I quit drinking all liquids by 8pm. Just a suggestion.

      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)


      • #4
        I was diagnosed a little over a year ago and I also suffered from urethral and bladder pain. Always feel like i have a uti. I just started D Mannose powder a month ago and just started Marshmallow root pills and Slippery Elm pills about 2 weeks ago. I have been doing AWESOME for the past week and a half. D Mannose seemed to help, but urethral pain still there so i used tea tree oil mixed with extra virgin coconut oil to put on the urethra. Still had a little burning sensation and sensitive bladder but the pills seemed to solve it. I haven't felt this good in years. Hope this helps. God bless.


        • #5
          I have to agree that not knowing is the worst time with IC. Once I had a diagnosis I could begin dealing with it. You'll find the latest IC diet food list at the link in my signature below. I've been cooking for my family for years and it's entirely possible to feed a family and stick with the diet. I do include side dishes that I can't have that family enjoys (such as sliced tomatoes), but most of the foods I prepare are IC safe.

          It can take time to make an IC diagnosis so unless you don't feel you can work with a particular physician, I think it may be a good idea to stick with one --- even if it means trying some conservative treatments first.

          Sending healing thoughts,
          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


          • #6


            • #7
              I think it's good you're getting another uro too. In the beginning I went to a few who just didn't want to deal with IC which I could tell by the way they rushed me out of the office with samples of an OAB med and a "see you in three months" farewell. The diet takes some time to get used to but you will. Good luck and I hope the new uro is more helpful. I went through a few but some people find a good one pretty quick.


              • #8
                Thank you for the replies everyone!
                I am going to start much more hardcore on the diet now. I had been good about avoiding most everything on the caution list, and most on the try it list, but I know I can do better. I had a question about the diet and consuming soy. It seems like so much out there has soy in it. Have any of you who have been successful with the diet completely given up soy?

                Toto, definitely let me know how the appointment in Cambridge goes! I hope you find a compassionate and helpful Dr.

                Another thing I was wondering about is exercise. I have been doing Jazzercise for years and I enjoy it so much! I have noticed that during exercise, I feel good, but I might be flaring after. Could it be the jarring of all the aerobics? What do you do for exercise?

                Best wishes and thanks to everyone who responded already! It really helps to know there is a resource out there for me.


                • #9
                  Good luck at your new dr's.


                  • #10
                    Soy doesn't bother me like it may other people. I can still eat my soy yogurt without any problems but I can't have soy sauce or anything with a base of soy sauce. I can eat tofu also and soy beans. For me I think it's the fermenting process they use with soy products that gets me. I wasn't able to do anything that was jarring to my pelvic area at first. Walking was fine but jumping was not. Using a reclining stationary bike was ok. It's so hard because right when you really need those endorphins to help you with the bladder pain you have to tone it down. Bummer Sometimes a trampoline was ok too as long as I kept it kind of slow and smooth. Now I'm able to do most exercises without problems.


                    • #11
                      Hi Michelle,

                      I just wanted to post that I have been searching for a urologist for years now to help me with symptoms very similar to yours. I live real close to you in Boxford and made an appointment with a new urologist who a nurse friend of mine recommended. I saw him this week and I thought that he was absolutely amazing!! He spent alot of time just talking to me and asking detailed questions about my symptoms and it was obvious to me how extremely knowledgable he is about IC and other related conditions.. and he is so very compassionate. I would highly recommend him!! His name is Dr. Robert Eyre and he is located in Needham, MA.. Feel free to email me's so nice to have IC neighbors close by. Take care,


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