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any advice??? i need help!!

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  • any advice??? i need help!!

    HI, i am new to this website....but i am NOT new to IC. I have struggled all of my life ( i am 36) with this problem. But i never had a name for it until probably about ten years ago or so.
    THis past year though my IC has gotten out of control. Before it was slightly annoying sometimes intrusive but always controllable with my medications. NOW it has totally taken over my life...I can barely leave my house. I have lost my job because of it and my quality of life has gone way down and i trully feel like i am losing my mind. I take four urelle's tablets a day and two 15mg ditrapan xl's a day and still i have little relief. and side effects aren't too good.
    I have had DSMO treatments but they didnt help. Now my urologist is telling me theres just really nothing else that can be done for me.
    I am so frustrated and so upset and i don't know what else to do. Or whom else to go to for help. LIfe is passing me by and i cannot join in. I got engaged in jan but i have no idea how i will get married or go on a honeymoon and i am so upset by this....I am ready to tear my hair out. and also it hurts to have sex now as well. people tell me oh just don't think about it .like it will go away. NO one understands this problem. no one understands the hell my life has slowly become. My IC got out of control when last april i was diagnosed with HPV ( human papilloma virus) and mild dysplasia but they said this shouldnt have anything to do with my IC. but i think its odd that that is when it went out of my control and hasnt really gotten any better. IF anyone has any suggestions to what or where i can get some more or better help please email me.
    [email protected] or [email protected]

  • #2
    Hi Gloria,
    First of all, I am sorry that you are going thru this. Is your Uro. treating your pain with pain meds? I know that I would not be able to function without them. And, have you tried Elmiron. I know that it helps a lot of people. Have you had hydro/distention done? Sorry about all the questions.....

    "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."


    • #3
      don't give up yet there is more treatment out there maybe you need to go to a pain sp. or find a diff uro. i'm having a hard time right now also with ic because of an infection and may be going back to the hosp. Not sure yet and hope they can treat this at home.
      Just know there is more treatments out there then your uro is offering you and you can get them
      good luck and keep us posted on how you are.
      Oh and welcome to the icn family. grouphug if you would like to chat please email me or im me.
      Medicine taken daily or as needed:
      1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
      2. MS.Cotin 100mg 3x daily
      3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
      4. Fentanyl 100 mg Change every 48hrs.
      5. Gentamicin 80mg install after each rescue treatment
      5 Leviquin 500mg self start as needed.
      6. Klonopin 1 or 2 daily as needed.
      7. Prosed/DS as 1 every 6hrs as needed.

      I have IC, but IC doesn't have me anymore!


      • #4
        Thanks for responding . I do appreciate that alot.
        To answer both of your questions. No i am not on any kind of pain medication. I don't really have alot of pain. Somedays it hurts but its nothing i cannot control with over the counter stuff , so far. I have not even been told about elmiron. so i don't even know what that is exactly. I have not had any hydro/ distertion done either. I was told that , that kind of procedure would not help me. Not only do i have IC but i have a bladder that is half the size of a normal person's bladder. SO they don't think that kind of procedure would help me. Believe me i have asked.
        I am at my second urology clinic now. I had a really good doctor when i was first diagnosed but he has since moved on and i have been floundering around for years now. THe medications i had been on were working fine up until last april. THEY were my lifeline to life. But now they arent really working anymore either. I am just at a loss as to which direction i need to be heading off into at this point. I just want to lay down and die. ANd i know that isnt an option. but i am so tired of fighting..i feel like i am fighting a losing battle. I feel like i am losing the best years of my life. Finding this website has been a blessing. I have felt like i have been all alone in this for so long. So please feel free to email me directly [email protected] at anytime. I would really enjoy talking to other people who know and understand what this is like.
        thanks again


        • #5
          I'm sorry you are feeling so bad Gloria. There are other treatments out there. Don't give up hope. I know it takes time and energy to find another uro, but it sounds like you really need another opinion on treatment options.

          My bladder is half the size of normal too and scarred, so it doesn't stretch very well. I am taking several different meds and they do make things easier. I also take pain meds (percocet) when needed and this actually helps me function. I still work full time.

          I am recently engaged too. The wedding planning has been very stressful. I plan to marry August 2004. I worry too about how my health will be, but I try to just take things day by day.

          The support of a loving partner can really carry you when you need it. I am very thankful for mine.

          Please know you are not alone. The people on these boards know what you are going through.

          Nicole grouphug


          • #6
            Hi Gloria and welcome, I am glad you found the IC Network and family. It is a wonderful support system and can help you out with lots of information, and support, through the bad times, and the good times, and know that you are not alone. IC can definitely get next to you at times, I know we have all had the same feelings at one time. I know I personally did, and everything seemed really bleak, until the right combination of meds were found, and I found the IC network and family. Hope that you can find the right treatments to help you deal with your IC, but know that you can always come here, and get a lot of compassion, and caring, to help you out when needed. Please keep us posted as to how you are doing, and feeling. Take care and welcome hugs, Iris. grouphug
            Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


            • #7
              I am glad you found us. There is a lot of info on here and in the Handbook on this site. I would also say to not give up. There are many more treatments you can try. Go through the Handbook, the Guest Speaker transcripts and read and you will see there are a lot of options. You may need to move onto another Dr. but don't give up yet. Lots of different installs beside DSMO and oral meds. Ask any question you want and we will do our best to answer.

              "Life is what happens when you are making other plans" John Lennon

              IC diet cheat sheet....

              Information for Patients can be found here.

              Jen's tips for great IC sex..[/url]

              Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

              "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."


              • #8
                Welcome to this wonderful site!!!!!!!!!!! Please don't give up, keep plugging along until you find the right uro that will find the right medication that will help you!!! It takes lots of determination and sometimes we feel we just don't have it but you will make it! Keep on and keep us posted!


                • #9
                  thanks everyone.....I really appreciate the responses i have recieved so quickly. It means alot to me to know i do not suffer alone and in silence anymore.
                  My fiance keeps telling me that GOD never promised we wouldn't suffer, however misery is an option.
                  sometimes its hard TO NOT be miserable when thatis all i feel and its hard somedays to see past that. BUT I do try am trying still. I just have been going thru this crap since april and it just hasnt gotten much better and i really feel like i am slowly going insane.
                  again thanks so much. I Hope someday at some point there will be a cure for this or something that works alot better and quicker than what i have been going thru.
                  May GOD take care of all of us.......I am so stressed out about some other things and its just not helping me any but i hope and pray that soon i will get some kind of relief.
                  gloriabono toilet


                  • #10
                    I do hope that you start feeling better soon.

                    grouphug kissing



                    • #11
                      Hi Gloria:

                      Are you familiar with the IC Diet? You may be consuming foods and drinks that irritate the bladder, such as caffeine, acids, spices, seasonings, etc. Check out the info on the IC Diet in this website.

                      Medical approaches have failed me so I am now taking a natural approach to improving my IC. A naturopath gave me three herbs: Horsetail, Cornsilk and Burdock to be used in a tea. They are suppossed to be good for the urinary tract. Cornsilk is an anti-inflammatory. Since IC is an inflammatory condition, this may help. I think it's starting to help a little. I've been drinking this herbal combination for four days now. The natural doctor also gave me a liquid called Bitterbark to help detoxify the liver. He looked into my eyes with a light and told me I was full of inflammation, namely from my liver, colon and bladder. eek He advised that I cut out dairy products since they can cause gas, bloating and inflammation. I have also heard of marshmallow root being helpful as a soother for the bladder.

                      Good luck on your IC journey. Know that you're not alone and you are among friends. grouphug

                      Zanni2 angel


                      • #12
                        Gloria, hi

                        I too am engaged and understand how difficult is to be so happy about it but yet so discouraged by the I.C. symptoms. As many others have said I would definitely look for another Uro. There are so many treatment options and you need a dr. that will keep trying until he finds something that will work. That's what I like most about mine. It took me a while and 3 dr.s later I finally got someone who understood what the hec was wrong with me and continues to offer various treatments as we search for the right combo. We're finding what works for a while to relieve symptoms may need to be changed later if it becomes inefective. It's a trial and error process and you need a dr. that really knows what options to try.

                        You said that you have a very small bladder. You might discuss hydrodistention with your dr. They put you to sleep and then stretch your bladder with water beyond its capacity. This often is used to help increase the bladder capacity of I.C. patients whose bladders have shrunk. This is just one of MANY options. I think a good starting place that you can do something about yourself is the diet as mentioned earlier. Learn all that you can about trigger foods and treatment options. When you start looking for a new uro you will be armed with imformation. I knew that I might have I.C. when I saw my current uro but I didn't tell him that. I wanted an objective perspective and I wanted to see if what he said matched with my research. Bingo, it did and I hit the jackpot with a magnificent dr. I know the right one is out there for you. Don't give up girl! You can and will find help if you don't loose faith. You have certainly come to the right place for information and support. We will be here for you! grouphug

                        Take Care and let us know how your doing in your search for the right treatment.



                        • #13
                          thanks rachael and everyone else that has replied.
                          I am aware of the foods and drinks to avoid. and i have been doing that for several years. its just been this past seven months that it has gotten out of my control and i don't know why. but i haven't left my house in two days . i am so miserable and depressed i cannot stand myself.
                          I have done nothing but cry and i know it does nothing at all to help my situation. I just am having a hard time seeing past my frustration at this point. and i know i have to snap to it and get it together. i cannot keep doing this.....
                          thanks so much for means alot to me.


                          • #14
                            I'm sorry you are feeling so bad Gloria. I've been there. You just have to take it day by day. I know it's easy to say that, but hard to do.

                            Like others have said, there are treatments out there that help people. There are a lot of things for you to try. And sometimes flares just get better for some reason. That has happened to me before.

                            It's natural to go through a grieving process when diagnosed with a disease like IC. The first couple of months after I was diagnosed, i felt awful emotionally. I still have times when I am overwhelmed or completely frusterated with this illness. But then there are days when I am able to focus on other positive things in my life. And days that I my bladder feels better, I am thankful for and I try to make the most out of them.

                            You are not alone. We care. I hope you are feeling better soon. kissing



                            • #15
                              Hi Gloria, I know it is rough on you right now, we have all been there, and you are definitely not alone. I had the same feelings after my diagnosis, and just could not get myself out of the pit, I felt I was in, and cried, and kept indoors. It took a while but I finally realised I was not alone, especially when I found the IC family. I now have more good times, than bad, and know I have wonderful support anytime I need it. Hope that you know we are all here for you, to support you through this rough time, and do know exactly how you are feeling. Hang in there, times will get better, I will help you in any way you need, take care and hugs Iris. hi grouphug
                              Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.