No announcement yet.

My story

  • Filter
  • Time
  • Show
Clear All
new posts

  • My story

    I am currently a college student diagnosed with IC. My symptoms started when I was 18 and I am now 25. I was misdiagnosed for the first four years with UTI's until finally my OBGYN suggested that I may have interstitial cystitis. I went to a urologist and they tested me for cancer first. Luckily, it was not cancer.

    I was fortunate enough to go to a urologist who was quick to identify that I had IC and I started taking two Elmiron twice a day. I was very frustrated as the medicine did not take away my symptoms until months later, but I was warned that that may happen. Once the medicine started to work, some hope was restored. Unfortunately my urologist is NOT very knowledgeable, and all I got was a pamphlet about IC. I did a LOT of research on my own.

    During this time I also drank water like crazy, and I gave up soda altogether. I started to exercise and lost 20lbs. I also limited my intake of tomato products and juice as they gave me the worst reactions. I watched my diet to see what I could eat in moderation and what needed to be added to my black list. Please take charge of your life and do as much as you can to make your symptoms better! When I visited my urologist again to see what else I could be doing he said, "You're already doing more than all my patients combined" but honestly that was no thanks to my urologist!

    It got to the point where I felt like I was getting MUCH better so I lowered my dose of Elmiron to one pill twice a day. A few months ago I would have posted that I may not need Elmiron at all!

    I am not sure what factors came into play; if it was my decreased dose of Elmiron, changes in my diet, etc... but my IC symptoms are the worse they've ever been. I'm sure you can all relate to not being able to put a finger on what exactly causes your symptoms, especially when your symptoms change all the time!

    As of today, I am currently going to my PT twice a week to try and see if that helps the problem. My PT told me that my muscles in my stomach and pelvic area are hypotonic which means they are always contracted when they shouldn't be. This will put extra stress on the bladder and cause IC symptoms to get worse.

    I have started to do exercises to help stretch these muscles out. It got to the point where muscle spasms were making me unable to go to work, so I started muscle relaxers 3 times a day. I've talked with my doctor about anti-depressants, but to be honest my depression stems from my inability to go to work or do things I enjoy as a result of my IC.

    So far the muscle relaxers allow me to get through a whole shift without having to leave. I'm very happy about this, as doctor appointments are expensive! It also helps me gain my confidence back, which is crucial for me. I'm the worrying type and stress causes your muscles to tighten... it's a vicious cycle I need to learn how to break.

    Breathing exercises and just learning to control my thoughts help a lot. Still, it's a process. I try not to think about the long term too much, as it overwhelmes me easily. My PT told me to think, "That's the last muscle spasm I'm ever going to have." Sounds silly, but if I don't think that, I'm going to think, "Oh my gosh can I get through work today?" Not the best mindset.

    It's also difficult because I moved away to go to school. I only moved 2 hours away, but car drives make it SO much worse! Drinking water, sitting on a pillow and having correct posture make a lot of difference. Before I was on muscle relaxers I would take some tylenol before getting on the road as well.

    I'm happy I found this site because I've kept my IC diagnosis hidden from my friends. They know I've been having health issues, but not why. It's the same at work (only my boss knows since it's started to effect work). I wonder if that is a mistake. The reason I've kept it hidden was because I didn't want them to worry about me or treat me differently, but the more I learn about IC the more I see that people have no idea what it is. Do you think it's better to become an advocate?

    How do you support finding a cause/cure without letting IC become your identity?

  • #2
    You are to be congratulated for continuing with school in spite of your IC symptoms. Have you returned to your former dose of elmiron? I hope you feel better quickly.

    Warm hugs,
    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
      I agree with Donna you are doing a great, job and school. I would resume my regular meds and see what helps.
      IC diagnosis 3 weeks ago.
      Vesicare 10 mg once daily
      IBS and Gerd-Zegerid
      IC diet
      Elmiron 100 mg three daily
      Hydroxyzine 25 mg at night
      Amitriptyline 10mg at night
      Diovan 60/12.5 daily
      Topral 50 mg daily
      Zoloft 100 mg at night
      Klonopin .5 twice daily


      • #4
        Changing the dose did help

        Yes, I went back to my original dose of Elmiron and it did help. Physical therapy and the exercises I can do are also beneficial. I'll also use an ice pack at night when I go to sleep. I try to prevent as much pain as possible.


        • #5
          Hi! I know I'm a little late in response but I just wanted to say hello, and that I am a 24 year old college student, and mommy. I know how frustrating it can be. Especially the car rides, those are one of my worst triggers too! My husband and I live kind of far from our families and are constantly in the car it seems like! Have you tried taking ice packs in the car with you, and some of those heating pack things? I forgot the name but you can strap them on your pelvic area where ever you need the most relief and alternate them with the ice in the car and that seems to help me! Best of luck to you doll PM me if you need anything!


          • #6
            Ice Packs

            Ice packs definitely help in the car. I am curious to ask (and hopefully you don't mind me asking) but does IC worsen when you have children (either during the pregnancy or after)? I worry that taking Elmiron would be bad to take while pregnant, yet I don't want to stop taking it altogether. I don't usually have bad hormonal IC flares, so I don't think I'd be in trouble but I figured I'd ask about your experience.

            My PT appointments literally changed my life. I couldn't go to work without worrying about if I'd have to leave or worse call into work altogether. After doing certain exercises every day it's helped with my IC symptoms a LOT. Now I can work through a whole shift without any symptoms at work or when I get home! I would recommend going to a PT especially if you're what they call a "clencher." When I get stressed I tense up my muscles. Obviously you can see where that can turn into a horrible cycle. Trying to stop my muscles from tensing up through breathing and stretching has made it possible for me to work again.

            It took 2 visits a week for a few months for me to get to where I am now. It was very expensive but once I paid off my deductible it wasn't bad. I knew I was desperate and when I started to see improvement I was more than happy to keep going. I should only need a few more appointments and then I'll be fine on my own (as long as I keep up with these exercises of course).

            I'm hoping that I will continue to see improvement. I'm lucky to be able to go back to work!


            • #7
              I have often wondered about the pregnancy thing myself. I want a big family, so it makes me worried.... I posted a new topic today asking if it gets worse in the pregnancy thread...
              28 yrs old,

              I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

              What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

              Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!

              Me in my graduation gown!


              • #8

                I'll check out the thread. It will be good to know what people experience before starting a family. Every is different I know, but it would still be nice to get a feel for what I should expect. Thanks for the heads up!


                • #9
                  I wish I could tell you if it was worse, or made any difference but honestly I have no idea. I had never suspected I had IC before about 2 weeks before my diagnosis, and my daughter is 3 next week so I really don't know. I was diagnosed with endometriosis roughly a year after having my daughter. Most of the worst of my pelvic pain came after I had her. Wish I could be of more help, but I look forward to seeing the responses on your other post.