Announcement

Collapse
No announcement yet.

Never thought I would be posting here.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Never thought I would be posting here.

    Sorry this is so long, but it was totally cathartic to write!

    When I found the ICN, not even 7 months ago, I never believed I would be posting in this forum. I read this forum, and the remission forum with such mixed feelings: happiness for those who were feeling better, but sadness because I thought it would never be me.

    When my symptoms began last July, it was mainly massive pelvic pain. I never had bladder pain, or urethral pain, and only peed a few more times than a "normal" person. I went through test after test, and doctor after doctor, before finally finding my current gynocologist, who told me he wasn't going to give up until he figured out why I was in so much pain. He didn't hesitate to prescribe me painkillers, which I did NOT hesitate to take! We tried muscle relaxers, birth control pills, a CT scan, a laparoscopy... we found out I had ovarian cysts, endomitriosis, and cervical changes... and still, nothing was getting better. I was at the point where I could only make it into the office once or twice a week, and generally had to leave before 5. Thank God for my boss, who honestly has to be the world's most understanding person. She suggested we turn my position into a full-time work-from-home job, but I told her I wasn't at that point yet. Almost... but not quite. My best friend was my heating pad, and I couldn't go ANYWHERE without it.

    My gyno finally suggested IC, and did a potassium sensitivity test. He assured me he really didn't think it was IC, but had no other tests to run to figure out what was causing me so much pain. Turns out- I had an immediate painful reaction to the PST. I went home with a prescription for Elmiron, and not much hope. My doctor didn't know a lot about IC past the PST and prescribing Elmiron. He suggested we do DMSO instillations, but I told him I needed more time to research what was going on with me. He sent me to a physical therapist who worked with pelvic floor problems in the meantime.

    It was then that I found the ICN. I found out that there was a diet that I should be on. That there were medicines that might help me besides Elmiron, and that many people found their way out of the pain. I found it hard to believe that could happen to me, but I went back to my doctor the next week, with a request... put me on hydroxyzine. I started going to PT, and found a urologyst who specialized in IC. He immediately started me on amitriptyline, and told me that he didn't think further testing was necessary. He believed I had mild IC, and that the main cause of my pain was my tight pelvic floor. He made sure I was on the diet, and told me to continue my PT.

    By this time, the pain was already starting to lessen because of PT. I was concerned because I was having some bladder symptoms: pain on urination, a general feeling of "uncomfortableness" in my bladder. My gyno said I had probably been having these issues all along, but that they had been masked by my massive pelvic pain. I made sure to stick closely to the diet, and take my medicine every day. By early December, I realized I was having more good days every week. I managed to come back to work full time, but still never left home without my heating pad! By mid December, I realized one day that, while I still brought my heating pad to work, I hadn't gotten it out to use in days. By January... I didn't bring it with me anymore.

    In early February, I found out I was pregnant. I immediately stopped hydroxyzine and amitriptyline, but decided to stay on Elmiron. Six weeks into my pregnancy, I realized my pelvic pain was coming back. Going off the amitripyline definitely made a difference. At seven weeks, I went in for an ultrasound, and we found out there was no baby- only an empty sac. My gyno told me it was most likely a blighted ovum, and to come back for another scan in a week. When I came back a week later, my pelvic pain was pretty awful again, and there was still no baby. I got cyctotec to start a miscarriage, some Vicoden for the pain, and strict instructions to immediately restart my meds.

    The miscarriage was much worse emotionally then physically. We do intend to try again, as soon as I restart periods. I've been back on my meds for 3 weeks now, and am feeling amazing. I've had no pain- bladder, pelvic, or urethral, since about two days after I restarted meds. I've been experimenting with the diet, to see what I can handle. (This has been the first time I've done this since November). Turns out... there isn't much I can't handle. I think I am one of the lucky ones for whom Elmiron performs its magic. I feel like me again- the me I was before last summer.

    I know I will have setbacks, and that things won't always be this good- but I'm just so thankful I've FOUND good again, when I was so sure that it wouldn't ever be the same as it used to be. And it's not the same- now, when I wake up and I'm not in pain- I'm grateful. I don't take it for granted, and I never will again. For anyone reading this, at the beginning of the IC journey- I was there. I was where you are now. Hopeless, crying, in pain every day... and you can be where I am now. Don't give up.
    Symtoms started July 2010.
    Severe pelvic floor pain only.

    2 time PT graduate!
    In medical remission since August 2011; able to eat and drink anything I want currently.

    IC meds:
    200 mg Elmiron in the morning
    100 mg Elmiron @ night
    Macrobid after intercourse

    03/11 07/11 01/12
    If at first you don't succeed: 07/26/2013!

  • #2
    Thank you for sharing such an encouraging story. I am sorry for the loss the you and your husband went through. I am glad that you are feeling better once again!! It is always good to hear someone is doing so well!! Especially for those that are just learning they have IC, they really do need the success stories!

    Sandra
    Last edited by sailawaygrl; 03-27-2011, 09:57 AM. Reason: spelling
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

    Comment


    • #3
      I am so happy that you were able to share such an inspirational story. I was diagnosed with IC last Friday and your story gives me hope for a semi-normal life. The heating pad has been my best friend for 3 years. First for my chronic back pain...now this. I look forward to the day I can be without it too. I am sorry to hear about your loss but am just amazed at your courage to try again. I am 32 and have no kids but was hoping to in the next 2-3 years. This IC thing has put a huge scare in me. I have hardly been able to keep up with my 3 dogs! I hope the future looks bright for you and your family. I hope one day I can move beyond this too and not look back. One of my favorite quotes reads, "Don't look back unless you plan on going that way." I will never forget the joyful memories that have made me the person that I am....but gosh, if I never had to think about IC again....that would be a huge weight lifted off of my shoulders. Best of luck to you

      Comment


      • #4
        What a wonderful post to read! I'm glad you are again doing better and hopefully it will stay that way for you.

        I am so sorry to hear of your miscarriage and know how emotionally devastating that can be. Seems there are never any good answers as to the whys.

        Thanks for posting your story. I'm sure you know it gives others new to IC much needed hope.

        Vicki
        "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

        Comment


        • #5
          Hi meResque,
          I have read your post, no one knows what will happen next.
          I too never thought of replying such emotional threat.I feel sad about your miscarriage but I am happy that you are recovering.
          Keep updating us with your health status.

          Comment


          • #6
            thanks

            Thank you for sharing that, and especially for the coaching-encouraging notes at the end.

            A couple of questions -

            How long did it take for you for Elmiron to have noticeable effect?

            What does hydroxyzine do, and what had you heard about it that made you want to try it?
            Last edited by playethic; 04-02-2011, 07:49 AM.
            ______
            Severe IC developed fairly quickly, autumn 2010.
            So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

            - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
            - Methadone 9 ml/day
            - Instillations:
            - 40ml Kenalog (steroid for inflammation) 2 x per
            week, along with rescue cocktail of heparin,
            lidocaine, sodium bicarbonate
            - 20ml Uracyst, monthly @ $100/per
            - Depo lupron injections for endometriosis, monthly @ $88/per

            Comment


            • #7
              I'm not really sure when Elmiron started to kick in for me- when I was diagnosed, I immediately went strictly on the IC diet, eating ONLY out of the Usually Okay column. I never had much bladder or urethral pain, but I DID notice after starting the diet and Elmiron my urination was less frequent- I now usually average 3-5 hours between needing to pee... down from every hour or 2 at diagnosis.

              How I know it's working is that when I DID start to experiment (and now, I've experimented a LOT), is that my urination didn't become more frequent again... EXCEPT in the case of low-acid orange juice, when I got pressure over my bladder and peed a lot for several hours. Even wine doesn't do that to me! No more oj, that's for sure. I started adding food and drink in slowly at about the 3.5 month mark.

              Hydroxyzine is actually an allergy medicine. Many with IC who also suffer from allergies notice that around allergy season, their symptoms get worse. It may be because of a build up of histamine in the bladder. I always got HORRIBLE seasonal allergies, so my doctor started me on hydroxyine at the same time as Elmiron. I don't know if it's helping, but as a benefit, allergy season has hit here in full swing, and I'm not bothered a bit!
              Symtoms started July 2010.
              Severe pelvic floor pain only.

              2 time PT graduate!
              In medical remission since August 2011; able to eat and drink anything I want currently.

              IC meds:
              200 mg Elmiron in the morning
              100 mg Elmiron @ night
              Macrobid after intercourse

              03/11 07/11 01/12
              If at first you don't succeed: 07/26/2013!

              Comment

              Working...
              X