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Here's my story. Sorry it's long.

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  • Here's my story. Sorry it's long.

    Hi Everyone. My name is Billie and I'm a transplanted American living on the island of Curacao with my Dutch husband and our two wonderful sons, aged 12 and 14.
    I've had IC since 2001. As is the case with many of you, it took a long time for a diagnosis, which was in August of 2004. I had a cystoscopy with hydrodistension at that time. The inside of my bladder was "beautiful," but the five biopsy pieces they took out showed non-bacterial chronic inflammation. I'd had only 3 bladder infections in my life before January of 2001, no surgeries. Then wham, the pain, burning, voiding every five minutes. I was put on antibiotics, a whole slew of them, for months, even though cultures were negative. I tried the Doxy protocol for months. It didn't help. Finally my uro (there were only 2 on the island at that time) relented and did the cystoscopy.

    I'm in a bit of a good/bad situation. I have the benefit of being treated with both European and American drugs and procedures. Kind of like our goods that are shipped in! Of course I am the only one here on the island with IC, so this board is truly a great thing for me.

    Diet hasn't had any affect on my pain or pressure at all. I've tried the IC diet for over a year. I've had Uracyst intills, which made my pain much worse. I've tried Cytotec, 200 mgs. 3 x a day for 9 months. It didn't help. I had to quit because of side affects. I quit abruptly and had horrible hot flashes (I'm only 44) and didn't have a period for 3 months. I also developed bad nerve pain while on Cytotec. I'm finally getting better from that nightmare and am almost back to normal. I have to say my uro at that time would prescribe what I'd read about on this site, so I wasn't all on my own.

    I've been on Elmiron, 100 mgs 3 x a day, since December of 2004. It really hasn't helped that much. I've also been on Elavil, 10 mgs, for about 7 months now, which is exactly how long ago Dr. J. Bade left Holland and came to Curacao to join the urology practice with my uro. He has published many papers on IC and I thought it was a miracle for me. No miracles yet, but I think the Elavil has helped a lot. I haven't had a bad, bad flare for a while, but the every day pressure is what is so maddening.

    I must thank Donna for helping me with posting. I really admire her and everyone on this site.

  • #2

    Wow... since you live in such an "unusual" place (don't think anyone has posted here from Curacao before! ), you're doing pretty good with finding care for yourself! And I'm glad you found the ICN. You'll find lots of support here... you're definitely not the only one in cyberspace with IC.

    *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.


    • #3
      What an amazing story. Good for you in being so pro-active. My case seems almosts the same as yours. The preasure sometimes is just unrelenting. It is so hard to discribe to anyone who does not have it what a painfull bladder feels like. I try to tell people a preasure and terrible cramping. I wish you the best of luck and it is great that you have a new uro. Have a nice night.



      • #4
        Thank you very much for your welcome. Yes, it's hard to describe the pressure feeling to people. It's like a bowling ball on your bladder, I guess is how I'd describe it. The Elavil has helped with that pressure feeling, not as much as I'd like, but so that my life is pretty darn good! Again, thanks for the welcome.


        • #5
          Hi Billie;
          Wellcome to the group. I belive your right, Donna is a wonderful person with great advice she also has helped me so many times with information.
          I also have had the emergancy instalations which didnt help me at all but maid my ic worse. I also take the Elivil. But now i am up to 150mg. But i just found out recently, that Elivil can cause urine retention. So i not have to contact my doctor on that. So watch out for that. The last 2 months ihave been having problems with the urination. And not being able to go fully. and not being able to go at all a few times. So make sure y ou talk to your doctor on the issue. I hate to have others go threw what i am going threw. But maybe for me its the higher dosage.
          Also I use flexeril, which is a muscel relaxor, works really well. the more you can relax the better it is for the IC.
          Its surpriseing to hear though, that nobody else on the island has never had IC. Its really very interesting. I am wondering how they manage not to have it.
          Take care dear, and remember we are here when you need us.

          Current Conditions:
          IC,Feb 06

          Prenecious Anemia
          Stomach Ulcers
          Acid Reflux
          Low Blood Sugar

          Gaul Bladder-1996


          Elmiron,100mg 2am 2pm
          Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
          Elavil, 150 1pm
          Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
          Prilosec,20mg 1am 1pm
          Zoloft,100mg 1 pm
          Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
          Reglan, 10mg, 1 3xday with meals-for duonditis
          Ultram 50mg 1 every 4hrs as needed for pain
          Pyridim,100mg as needed
          Vicodin 5/500 as needed for pain
          Heating pad
          Ice Pack
          Arthritis Pain Equate brand 650mg usualy 2 at a time
          Stool softeners w/stimuli, 2am 2pm[/COLOR]

          Hopefuly no more gets added to the list!!!

          I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
          Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
          My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
          When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
          Dont forget to take care of you!
          Take care