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"A Tribute To All The Long Time Pain Sufferers From Interstitial Cystitis"

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  • #16
    Ronda thank you, you have such a kind heart.

    IC is such a awful disease and if you fight it alone you will eventually lose the battle. I definitely was at my breaking point and without this doctor that I have now, I don't think I would be here today.

    I am just so grateful doctors are checking the bladder out and realizing something major is happening with it. I am so grateful people are receiving the help they need and not feeling like they have to fight this alone. Even though there is no cure, I am thankful that I can still get somewhat some relief. It is really ashame that there was no awareness of IC, at least with my doctors. It took so many people going through this in order for them to realize something is wrong or even looked at.

    I am so grateful there is help out there. Maybe now people's bladder can be save or be able to get some comfort.

    Thank you Ronda for your thoughtfulness, you just made my day even better.
    Take care, Trishann

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    • #17
      Thank You

      When who said that a doctor told you it was a crazy person diease i almost cried. I am 16 and my symptoms started when i was about 14. I went to a doctor he did a hyrdo/cysto and doidnt find anything...so he told me it was all in my head. I recently started seeing a social worker and she suggested i wrote and nice letter and mean letter to that doctor so i could get over it. Well i did it..sent it and he wrote back. And acted like the doctor who told me i was crazy. He said IC is overdiagnoised and another bunch of non sense.
      But ive been flying back and forth to NYC to see dr. moldwin who is just so amazing and has the most compassion i have ever seen. I was diagnoised july 1st coming up on two years but it rochester,ny from another uro.
      But every doctor ive seen has pretty much said the same thing to me. The doctor in rochester believed iin me but after a while it wasnt going away so he just said oh she just ddoesnt want to go to school. So i headed over to nyc and saw dr. moldwin he was amazed at my age but he was the most kindness person and doctor in the world. I know a lot of doctors get bad reviews but dr. moldwin really cares. I just saw him two weeks ago ffor my second botox treatment..he says if this doesnt help me anymore he has some more tricks up his sleeves....and im about to say get them out because my 2nd round isnt going as good as the 1st...for PFD. My friends dont talk to me and dont care. My real bestfriends are you guys and my mother for being there and going to every doctors appointment. I cant wait till this all goes away for all of us...hopefully a cure will be found SOON!!. Thanks for the start of the post....i think we are all hereos to one another.
      Laura

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      • #18
        I appreciate everyone here. I also think that we are heroes to each other. This is my very 1st post. I had the worst week with my IC and PFD and I started reading the posts and today, this gave me a chance to tell everyone that I truly appreciate the support I have witnessed on this site and I hope ya'll can help me get through all of this mess! I will be around, just joined and I am on disability now for my conditions.--I really need a lot of support; no one around me understands my pain and discomfort and some just act like they don't care.
        Rachel

        Dx'd Pelvic Pain Syndrome 2003
        Dx'd IC Jan. 2003
        Dx'd Fibromyalgia 2003
        Dx'd IBS 2003
        Polycystic Ovary Syndrome since teen
        Dx'd Vulvodynia 2005
        Dx'd Vulvar Vestibulitis 2005
        Lymphedema in legs, pelvic area, feet and hands
        Severe Anxiety Disorder since teen
        Major Depression since teen
        No periphreal vision, found @ very young age

        Current Meds:

        Oxycontin 80mg x 4 per day
        Lortab 10 x 5 per day
        Xanax 4mg per day
        Soma 350mg 2 x per day
        Pamelor 50mg at night for sleep
        Phenergan 25mg as needed
        Prelief
        Bisacodyl 5mg 2-3 tablets at night for IBS
        Effexor XR 75mg x 1 a day
        Lasix 40mg x 2 per day--for Lymphedema/swelling
        Lidocaine 5% gel as needed for VV & Vulvodynia
        Lidocaine 5% patches

        *On disability since Jan. 2007. I was approved after appealing for almost 4 years. My current doctor was an angel in helping me get through this process. It was a nightmare to pay for meds before I rec'vd insurance through Medicare. Thank God for answered prayers and guidance.

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        • #19
          Hi Rachel

          Rachel people here do understand and sometimes we just need to know we aren't alone and you are not alone. I know I learned so much on this website and I hope it will bless you as much as it has me.

          Take care and hugs, Trishann

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          • #20
            Thanks!

            Thanks so much for the positive reply and I really know that there are other people that truly understand my pain, depression, anxiety, well, just everything. I think this site has many things to share and the people with these medical problems can actually vent and get a positive reply and encouragement to move on; instead of give up. I can say that I have been down the hard road and still fight every day to keep on. Thanks for your reply and I look forward to sharing and helping others get through this terrible time in our lives.
            Rachel

            Dx'd Pelvic Pain Syndrome 2003
            Dx'd IC Jan. 2003
            Dx'd Fibromyalgia 2003
            Dx'd IBS 2003
            Polycystic Ovary Syndrome since teen
            Dx'd Vulvodynia 2005
            Dx'd Vulvar Vestibulitis 2005
            Lymphedema in legs, pelvic area, feet and hands
            Severe Anxiety Disorder since teen
            Major Depression since teen
            No periphreal vision, found @ very young age

            Current Meds:

            Oxycontin 80mg x 4 per day
            Lortab 10 x 5 per day
            Xanax 4mg per day
            Soma 350mg 2 x per day
            Pamelor 50mg at night for sleep
            Phenergan 25mg as needed
            Prelief
            Bisacodyl 5mg 2-3 tablets at night for IBS
            Effexor XR 75mg x 1 a day
            Lasix 40mg x 2 per day--for Lymphedema/swelling
            Lidocaine 5% gel as needed for VV & Vulvodynia
            Lidocaine 5% patches

            *On disability since Jan. 2007. I was approved after appealing for almost 4 years. My current doctor was an angel in helping me get through this process. It was a nightmare to pay for meds before I rec'vd insurance through Medicare. Thank God for answered prayers and guidance.

            Comment


            • #21
              I think we are all heroes here, no matter how long we have had this disease, whether its been one month or 30 years (I have had this for 18 years --plus at least 5 years before being dx with it). I have had my share of doctors who have told me that the pain from IC is in my head (my former GYN after 20 years when I started to complain to him during my exams) this year I'm seeing my PCP- as he seems like he understands IC pretty well, along with all the other stuff that I have!) You would think that with all the articles in magazines and now advertisements on TV you would think Doctors would know more about IC, but I guess we couldn't be more wrong. Sorry Rhoda, you and anyone had to go though this.

              Comment


              • #22
                Unfortunely as the old addage goes we must "suffer the fools" to get to the doctors that know IC does exist and what it is. I lost count at how many "doctors" I've been to and subsequently walked out of telling them "And you call yourself a doctor?" - its disgusting.

                This should just confirm that just because they have MD after their name does NOT mean it is a "know all - end all - be all" thing; remember, there are cream of the crops and bottoms of the barrel picks in the medical field, just like lawyers. Doctors get picked for hospitals based on their "scores" and "word of mouth" by patients. So spread the word on those doctors that you love, that are compassionate and that BELIEVE their patients - and praise them to the highest peak because they deserve it - and in the same breath - those "doctors" that keep pushing us under the rug and stepping on chronic pain patients, those patients with conditions (like ours) who say "its all in our heads" - RAISE YOUR VOICES and let their names be spoken more loudly than ever before because just as your praise for a great compassionate doctor will do wonders - watch how fast your voice will be heard for one that has no compassion, doesnt care, and thinks patients problems are all in their heads will be heard! I've seen this work first hand and have seen doctors lose patients very fast - and MADE TO CHANGE their beliefs from the medical boards. If they lose patients..they lose their practice....the captain goes down with the ship.

                We ARE stronger than people give us credit for - one ripple in a pond starts out small but becomes huge over the course of time.

                Hugs
                Brittany

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