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  • New here, please help!

    Hi everyone, here's my story. Sorry if it's a little long, I just want to get it off my chest.

    When I was about 11, I developed severe bladder pain. There was a constant sting "down there" and it hurt every time I peed. My mom took me to the doctor, who referred me to a urologist. The first urologist thought I had a UTI, but the test came back negative. She didn't know what to tell me. I went to a second urologist, who told me I had bladder spasms and put me on Levsin. It didn't really help.

    I would come home from school each day and cry because I had been in so much pain. I felt like nothing could make it better, and was sick of doctors telling me there was nothing wrong with me. Finally, after about a year, the pain slowly went away and I forgot all about it.

    I'm 20 now. I lost my virginity at 17 and, although penetration was a little painful, I otherwise had no problems with sex. I was on the birth control pill Ortho Cyclen, and had no problems. Then last summer I stopped taking the birth control because I was no longer sexually active (and I was lazy). Then I hooked up with a guy at a party who fingered me, and all hell broke loose.

    I started getting that dreaded pain in my bladder again. I went to my doctor, who had me tested for a UTI (and STDs, just because). All tests came back negative. Frustrated, I did some research, and came across interstitial cystitis. And finally my questions were answered.

    The pain from getting fingered lasted about two weeks. And then I forgot all about it. I got fingered again in December, and the pain again lasted about two weeks. About a month ago, I had sex. I've hated myself every day since for not thinking about how it would affect my IC. A day or two after the sex, I started to feel discomfort. Thinking it would go away after two weeks, I waited. Nothing. The pain was just getting worse. I made an appointment to see a urologist who specializes in IC. His next available appointment is in July. At first I was reluctant to call my regular doctor, thinking she won't be able to help me (she didn't even know what IC was last time I talked to her) but decided to go ahead and see her because the pain was getting so bad. I researched Elmiron and hoped she'd prescribe it for me.

    She told me I had a UTI, even though I was sure I didn't. She also told me I was allergic to latex condoms, which doesn't make sense (I'm not allergic to latex gloves, and the pain also comes when I'm getting fingered, when no condom is involved). She made me take a urine test, but I convinced her to prescribe me birth control again, because I thought it might help. The urine test came back negative, so she called me and I finally convinced her to prescribe me Elmiron. She made the prescription, but according to my pharmacy (and the FDA) it's backordered for a few months. This news was devastating.

    Since then I've been taking Cystoprotek and the birth control pills while I wait for my appointment with the IC specialist in July. I also made an appointment with a physical therapist who specializes in treating chronic pelvic pain.

    For the past few days my bladder pain has been UNBEARABLE. I lie in bed all day in tears because I'm too depressed to do anything else. I don't know if it's related to my period (which just came), or to the birth control.

    Should I stop taking the birth control? I'm not sexually active and was only taking it for IC. And it doesn't seem to be helping. Also, is there anything I can do to stop the stinging pain in my bladder? I need something to hold me over until I see the IC specialist (his name is Christopher Payne and he's affiliated with Stanford. I've heard nothing but good things about him). I just want my life back. Any advice? I'll do ANYTHING to make this pain go away.
    Last edited by ICNDonna; 06-18-2011, 02:24 AM.

  • #2
    One thing you can do is to give the IC diet a try. You'll find a link to the latest food list in my signature below.

    Elmiron can take six months or longer to become effective --- and hopefully it will be available again very soon.

    Dr. Payne is well known in the IC community. You are fortunate to be near enough to his office to see him.

    Warm hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    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: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Thanks, Donna. I'm printing out the IC diet cheat sheet right now and sticking it on my fridge. What do you think I should do about the birth control?

      And yeah, I'm so blessed to live so close to Dr. Payne. His office is about 5 minutes away from my house.

      Comment


      • #4
        Yes donna is right stick with the diet, and when you see the uro he will find a treatment plan for you. I wish you the best; and let us know how you are doing. You can ask all the questions here this is an excellent support forum. We all have been in your shoes and we pray for a cure soon.
        <center>
        <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
        </center>

        Comment


        • #5
          Thanks.

          It's June 18th today and my appointment with the urologist is July 5th. Is there anything I can do between now and then to make my pain go away in addition to the IC diet? There is a constant burning pain in my bladder and I'm literally bedridden because of it. Please, please help!

          Comment


          • #6
            Try AZO you can get it at any walmart.
            <center>
            <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
            </center>

            Comment


            • #7
              Have you tried taking 1 tsp. of baking soda in 8 oz. water? It doesn't taste very good but can help with the burning. I think it is not recommended for someone with high blood pressure.

              Comment


              • #8
                I'll try both of those things, thanks!

                Comment


                • #9
                  The AZO seems to be helping, but the box says I can only take it for 2 days. Can I take it for more than 2 days or would that be really bad?

                  Comment


                  • #10
                    You really should talk with your doctor before exceeding the recommended dosage for any over the counter medication.


                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    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: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    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.
                    [3MG]

                    Anyone who says something is foolproof hasn't met a determined fool

                    Comment


                    • #11
                      Personally- Ive taken it longer than 2days- probably for about 5-6. I dont think it would be so bad for you to take it up until your appointment with the specialist if it is helping you.

                      Sarah.x

                      Comment


                      • #12
                        I have taken azo for weeks and it did help, anything is better than suffering. You can always call the nurse and tell her it helps and ask her these concerns.
                        <center>
                        <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
                        </center>

                        Comment


                        • #13
                          It may be entirely safe for you to take longer than the recommended dose listed on the package, but you still need to talk with your doctor first. For one thing, extended use of pyridium (the same as AZO) can stain contact lenses.

                          Donna
                          Stay safe


                          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                          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: http://www.ic-network.com/patientlinks.html

                          Sub-types https://www.ic-network.com/five-pote...markably-well/

                          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                          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.
                          [3MG]

                          Anyone who says something is foolproof hasn't met a determined fool

                          Comment


                          • #14
                            Please help

                            Ok, I'm back.

                            So I saw Dr. Payne in July. He told me I had pelvic floor dysfunction and not IC, so he sent me to a physical therapist. I have been in physical therapy for several months now (going every 1-2 weeks), and for a while it was helping. There were days when I was completely pain-free! Anyway, for the past week or so, I've had EXCRUCIATING pain in my urethra. It was the worst today. I'm a pre-med college student but I had to miss some of my classes today because it hurt too much to move. For the past 3 days I've been in tears because it stings so badly.

                            The one thing that does help is over the counter AZO. If I take it, I'm pretty much pain-free for about 4 hours! The problem is, I've been taking it for like 3 days now and the underlying problem doesn't seem to be getting better. And I know you're not supposed to take it for more than 2 days. Dr. Payne said I could take it for more than 2 days, but I'm not sure how much. I'm going to my doctor (general practitioner) tomorrow to get a urine test, though it'll probably come up negative for a UTI.

                            The problem may have been caused by my excessive taking of vitamin c recently. My roommate is sick so I kind of forgot about how acidic vitamin c was and I took a lot of it. Since then I've stopped taking any sort of vitamin c, but the problem has only gotten worse. I've also tried drinking water with baking soda, and that hasn't seemed to help.

                            Another thing I've done recently is use the vaginal dilators my physical therapist gave me. A day or 2 ago I used one of the bigger ones I've never tried before. Could that have set it off? It was painful going in, but I thought it was supposed to be like that (the point of them is to stretch out the vagina).

                            Anyway, can someone PLEASE, PLEASE, PLEASE tell me what to do? I plan on calling Dr. Payne's office tomorrow to see if there's anything one of his nurses can tell me. This is some of the worst pain I have ever felt and I'm at my wits end. I've cried pretty much all day for the past few days because I'm in EXCRUCIATING pain.

                            Comment


                            • #15
                              Did you find following the IC diet helpful?

                              With my last flare I did a lot of reading about food allergies/sensitivities and I am certain that for me the food I eat comes into play with urethral/vulva pain. I can't eat wheat/gluten because it causes extreme joint pain, and I cut dairy out of my diet because it aggravates my seasonal allergies, eczema, and sinus problems. So I had been eating a lot of gluten free products containing almond four, eating a lot of nuts, potatoes, sweet potatoes, and drinking a lot of almond milk. All of these things are high in oxalate and interestingly some people who follow a lox oxalate diet have found relief from IC (and other) symptoms. I am doing my best to eat low oxalate for the next few weeks to see it will be helpful long term for me. It is overwhelming but I know I need to do something, I feel like I pretty much lost the last 2-3 weeks because I felt so awful with urethral/vulva pain. I think this last bout was triggered by eating gluten and allergies, I just felt like my whole body was inflamed and sore. I don't want to happen again.

                              Comment

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