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Erins Story

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  • Erins Story

    Hi everyone,
    My name is Erin, i am 20 years old and live in Australia. I was diagnosed with IC last November after 2 1/2 years of symptoms. It all started when i had a laparoscopy to remove a cyst of my ovary. The shock that my bladder took through the surgery caused my IC, which we now know. i went to my first Dr who was a gynae as i didnt know that it was IC and he performed 2 more laparoscopies to see if it could be endometriosis which my sister has but to no avail. I was then referred to a urogynae and she is great. My first appiontment she performed urodynamics and bladder could only hold 130mls before i was busting to pee, not very good at any age let alone a 20yr old. So then explained all of my symptoms which include frequency, uregency bladder pain but worst of all lower abdo pain, which at times is impossible to deal with. My symptoms at first were not too bad and then got worse about mid 2005 and now cant remember the last pain free day i had. which sucks because i have two jobs and i go to university. My urogynae first put my on a course of tablets called /allegron which are anti deppressant drugs but had no effect on me at all. Then i was put onto anti-epileptic drugs called Lyrica which also did nothing but give me terrible migrains. After this i had a trial of Botox in my bladder and a bladder dilation done under a GA. i was in excruiating pain after this for about 3 weeks and was finding it really hard to pee, it has since settled although still find myself in the toilet for 10 mins trying to pee, really have to push it out, that then adds to the abdo pain. The botox or dilattion has not worked at all. Have recently had my 6 week post op appointment and the next step is to try DMSO instills which im really not looking forward to as catheters absolutely kill me. dont take much for the pain as i can find no one that will prescribe anything so i pretty much have to live with the pain which most days puts me into tears. Before i found this website i felt really alone as i knoew no one that had anything remotely the same. I am really down at the moment cause it just feels like nothing is going to work for me. I am trying to stay as positive as i can but it gets really hard.

    So thats my story i just have my fingers crossed for all of us that they find a cure.

    Erin xxx

  • #2

    I'm so sorry you have IC at such an early age. I just hope you find some effective treatments soon.

    Are you following an IC diet? You'll find diet information in the Patient Handbook --- some ICers find that single step helps more than anything else. Has your doctor suggested trying Elmiron? It takes up to six months or more to become effective, and it doesn't work for everyone, but I think it's worth a try. You might also ask your doctor about trying a smooth muscle antispasmodic, such as hyoscyamine.

    Sending warm 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


    • #3

      Like Donna, I hope you find some effective treatments soon. There is a whole list of them in the Patient Handbook. There are some on the list that you have not mentioned, so perhaps one of them would be great for you!

      *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.


      • #4


        I can't imagine the pain you are feeling. I don't know how frustrated you must feel. But I do know that almost everyone here has had experiences that they will gladly share with you. I hope you are able to get relief soon. In the mean time just keep posting.
        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
        My Helpful Hints for Home Instillation:

        Institute of Female Pelvic Medicine (J. Dell, My MD)
        Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
        I post to encourage and offer total support for rescue instillations.
        Find me on facebook: L. Clark Thomas


        • #5
          Hi guys
          thanks for the friendly words, i am keeping my mind focused on staying positive. My doctor has talked to me about ELmiron but it is very expensive in Australia and i am not able to get any kind of funding. And the othe one hyoscyamine. I have never even heard of it so i will be sure to ask about it. In the mean time i have my fingers crossed that the DMSO will help.

          Erin xxx


          • #6
            glad you found us. You will find a wealth of info with in these pages, and never ending support.
            'The will of God will never take you where the Grace of God will not protect you.'


            • #7
              Hi Erin;
              Sorry to hear you ins so much discomfort and also so much stress. I can relate to the problem of not being able to pee. I also am having that problem. My urologist thinks i might have Pelvic Floor Dysfunction.. WHich I am begining to think is right. On the 3rd of this month, I had a cysto with Hydr and also the DMSO. The good news is at least here they do it under sedation. If your doctor there doesnt I would surgest it cos if it hurts that much, then you do not need to suffer. My suregery went fine. Not pain from the catheder. Belive me they hurt for me too. I am haveing such a hard time threw the year to empty out so and have had so many cathiders, and cry every time. But this was not bad at all. I would talk to the doc to try it that way.
              Its good you where able to find that it iwas Ic though. I was about your age when i started haveing my medical problems, But i was 32 before i was diagnosed with IC. They always blames it on just Endometriosis. Which the docs still go back and forth on. The sooner you can get the right diagnosis the better.
              Some of the medican you where talking of, is differant then here. Are you taking one which will help to heal your bladder lineing? Here the name is Elmiron. it takes a while for it also to ake hold but its working well.
              You should ask your doctor about Pelvic Floor Dysfunction, since your haveing hard time not going to the bathroom. To help with that your suposed to go to physical thatrapy. its suposed to help a lot for it. Of course everyones situation is differant with IC. You might also want to try the IC diet. for me the only thing which both me are citris foods. so i stay away from it. stay away from cranberry juice also. if u dont have ic its great for bladder infections, but with ic, its a really bad thing to have.
              I wish you good luck. best hopes to you. Your so young, but maybe you can get a hold on it though and be doing well soon. I really hope so. For you, I am not sure what your jobs acculy are, but what I did for mine, I became up front and honest. I was missing 2 weeks a month because the pain was so bad. I took in the info i recived from my doctors. And sat and explained this is what I have. I wasnt making it it up. let them take the time to read it so they understood. I also brought in doctors slips to say i had some restrictions or needed to use the resturm often or what ever is needed for ur situation have your doctor do. After that they really understood. I felt bad for missing work, But they knew i wasnt just having up while i missed work also.I work as a preschool teacher assistant, luck for me though when i missed, there was fillins. I also explained to all the other teacher i worked with and a major thing no lifting over 20 pounds. It really makes a differance for me. I used tow ork with infants and when they got bigger to 12-15 months when i pick them up i was haveing so many flare ups.
              So thats my little bit of info for you, Hope some of my info can help you. Good luck I hope you will get soem great help soon,
              take care of you

              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