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  • sad to join the "club"

    Hello to All,
    I am new to this message board - in fact new to message boards at all! I have been recently diaganosed with IC. It started Aug. 2006 very suddenly. I have been through all the tests and have been trying various medications to no avail. I have not had one day of relief. I am under the care of a uro-gyno who does believe that IC exists, it just that she really sucks when it comes to pain relief. I finished up 7 weeks of installations with the "RIMSO cocktail". Every week I got worse - my doctor just ignored me and told me I have to finish all 7 treatments before we could do anything else. I used to have moderate pain with intense frequency. When I finished my last instillation 2 weeks ago, my symptoms switched suddenly to almost no urgency, but extreme bladder burning. I have been trying a natural supplement called Waterfall d-mannose. According to their website, people with IC will get worse for around 3 weeks before they get better. (seems all treatment options say the same thing - will always get worse before improvement). Has anyone else tried this? I still have one week to go to see if I get any improvement. Also, I live in Burlington, New Jersey, and was quite disappointed that New Jersey is not listed for any support groups. I could really use a friend now. I have no family support and we had just moved in a few months before I was stricken so I haven't been able to meet many neighbors. I feel like a hermit with the only time I leave the house is for Dr. appts. My husband is usually understanding and supportive but I can tell he is starting to wear thin. We have 3 children and it can be hard for me to take care of them like I used to. I guess this has been so hard because I went from perfectly healthy to this horrible mess. My life has just spiraled down and I can't seem to get this IC under any sort of control. I'm NOT suicidal, just frustrated. I don't know a single other person who has any sort of condition like this. It's just so strange since I still don't have anything else wrong except my bladder screaming at me 24/7. Anyhow, thanks for listening. I know most of you have been through alot worse than me. I guess I just need a little support. It's hard to stay optimistic when your alone and in pain most of the time.

  • #2
    Hi!
    I understand your frustration. I'm new as of about 3 weeks ago. I am 32, have 2 children, and went from being perfectly healthy and running 3-5 miles a day to having a bladder disease. Its ridiculous and unfair.

    My emotions have been all over the place. My pain is bearable right now. I am on the IC diet, but am recently experimenting with "NO NO" foods to see if they affect me. I take Elmiron, hydroxodine and have physical therapy.

    The good news is that though it isn't "curable" people do get better and go on with their lives. They call it remission, and it can last a long time.

    You'll need to get on the right meds, read everything you can and

    This is a great support board!

    Comment


    • #3
      Hello elamar and

      I want you to know you are not alone!! We know how you feel..Life is tough when you are dealing with this disease and trying to take care of a family, but alot of on here are dealing with the same issues.. Between my husband and I we have 4 kids and yes its hard..

      But please know that there is help out there.. I was miserable until my GYN found what medicines work the best for me..
      Also if you stuck to the IC diet that will help alot.. I will give you the link below to the IC handbook you can learn alot by reading it..Well good luck and

      God Bless You

      Ronda

      http://www.ic-network.com/handbook/
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN 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.

      Comment


      • #4
        Hi and

        Not everyone responds well to DMSO (or "Rimso") -- some even report it makes them worse. This was the case for me. Way back when I was first diagnosed, my first uro did these instills and not only were they horribly painful to hold in my bladder, my symptoms did not improve and it seemed that the more DMSO's I had, the worse I felt. I ended up switching docs because this uro did not want to try much else. Yet, there are people on this site who report excellent results with DMSO.

        So, the point here is, not everyone responds the same to treatments... which makes the disease extra frustrating, because you have to keep trying many things before you find what works. Please explore the "Treatments" section of our IC Patient Handbook at http://www.ic-network.com/handbook -- it describes most, if not all, current treatments for IC and how they are thought to work. You can even print parts out and take them to your doctor to discuss trying them.

        I do understand how frustrating things get. I have had bladder issues most of my life but suddenly, in December 2003, things got a hundred times worse... the pain was unbearable. I went from normal to not being able to drive for more than 10 minutes without a restroom break. While I don't have any kids, I know that my work and social lives have suffered, and there has been the occasional tensions between my husband as well (he's supportive most of the time but gets frustrated sometimes, which can be expected).

        Know you are not alone and that you can come here any time at all for support. Again, welcome...
        ****
        Jen

        *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.

        Comment


        • #5
          Hi I wanted to add my ...I know having IC is very frustrating and hard. The bad thing about this disease is trying to find the right combo of treatment and diet and meds that help us indivially. With this disease it is so different from person to person.

          I will have to agree with Jen about the DSMO treatments. For some people they find it actually makes their IC worse. I am not sure why though. Also if your doctor is not treating your symptoms correctly and not wanting to listen to what you are saying, you might have to find someone else. While I know this can be irrat. and stuff some times it can take several doctor to find the right one for you.

          What kind of meds do they have you on?? Some medicine's like Elmiron can take anywhere from 6 mths to a year for you to see the full benefits of it. This is something most doctors put you on when they diagnose you with IC. Also are you doing the diet? Like Jen suggested I would explore the treatment section in the patient handbook link listed above.

          Remember something though alot of people do find the right combo of treatment, diets and meds and do go into remission. They are able to find out what works for them and what does not. And usually these patients are not on this site as much as they where in the beginning, because they are able to move on and get out. They give hope to the new ones coming here looking for support. Because I know it can seem bleek. But there can be life with IC. I have had it for close to 11 yrs now. I have 3 kids and even though I fight with my IC on a daily basis, there are other not like me that have been able to put theirs in remission. I am one that most meds and treatments dont work, but I am not the norm when it comes to battling this disease. And even though I am like this, I fight on. I have learned to let myself guide and direct my life and not to let my IC rule it. ((((HUGS))) to you
          God grant me the serinity to withstand the days ahead!!!

          My myspace link...
          www.myspace.com/patricia_luvs_matt


          Patricia

          In Memory of My Father (Lawerence) 1/25/2007

          Procedures:
          Interstim Sept 2001
          1st InterStim Removal May 2005
          2nd Interstim Implanted May 2005
          2nd InterStim Removed March 2007
          Hysterectomy 1999
          Tubes Tied 1997
          C-Section 1996


          Me and my kids


          Taylor (my daughter) Me and my daughter My son Cody and Taylor

          Comment


          • #6
            Hey, I am in New Jersey, not too close to you but certainly close enough for a phone call if not a visit. Feel free to PM me any time, and I'll give you my phone number.
            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
            Wishing you happiness and good health, and all the best out of life.

            Peace, Carolyn
            ___________________________________________________

            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


            On the Beach with IC

            Comment


            • #7
              Hi Elamar,
              Welcome to a place that has members who understand where you are coming from. I know what you mean about not having much support where you live...I am in the same boat, as far as I know. Heck, with this disease, I might even have a neighbor who is sick with IC too...but many of us stay at home and suffer and stay quiet and fearful. I know that is not healthy, and that is one reason I turned to the board here. I am now better, and I read all the posts I could to get to know how other people with IC coped. I was stunned to read some of the cases. I got strength from reading what others have been through, and have been reminding myself that it does get better at times.
              I appreciate your going ahead and saying, "I am not suicidal". I think that shows you know what others might worry about concerning you and you sound very self aware!
              Hey, we are all in this together so remember that; I do and I swear; I feel close to many of these women whom I have never met. In our hearts, we have met, and I am so thankful I found this forum and now you have to!
              Stay in touch and whenever you are in a bad, low mood, and sick as well, you can email one of us or several. I know you may email me!
              I am in North Carolina and have a good Doc who offers many, many options to choose from....he trys very hard to help each patient. I hope you can find someone like that to manage you especially during flares.

              Take care girlie, and remember these gals (and guys) care!

              Love and friendship,
              Katheryn

              Comment


              • #8
                I forgot to tell you; I too suffered worse from DSMO, and did not get a lot better until i healed from that assault on my bladder. I know that some have taken them and gotten better, so it may work for you, but for me, it was hellish. I was feeling very upset and unsettled in my head about doing them after the first one, and boy, it was a relief when I put my mind at rest by praying about it, and then just knowing they were not for me! Talk about peace of mind!
                Have you thought of showing your Doc some of the latest treatments (from research and other Doctor's approach that are not so invasive? I know that he/she may not welcome you knowing more....or maybe he/she will...but it will not hurt to try. He/she can say yes or no and then you have that out there in the light.
                Sometimes, as you know, we have to be our own advocates...and with IC, it seems to be the standard. It is hard, but we have to request changes. I hope you can find someone to accompany you on Dr. visits to help give you strength and support. We are standing by you in spirit.
                Katheryn

                Comment


                • #9
                  Just wanted to thank you for writing so soon. I just got through another horrible flare - although I feel like I'm always in a flare! I still have not had much relief from my symptoms. My uro-gyno just admitted yesterday that she is out of ideas and options and I am getting referred to Dr. Kristine Whitmore at University PA. She is supposed to be one of the best in the nation for treating IC. She supposedly is on the cutting edge of new treatments. So I'll try to pass any info along as I meet with her. Thanks again for caring enough to write.

                  Comment


                  • #10
                    I am glad she is choosing to send you to someone else that might be able to help you. Having someone that is so up-to-date on treatments and so forth can make a world of difference with someones battles...I hope this works out well for you and they will be able to do something for you
                    God grant me the serinity to withstand the days ahead!!!

                    My myspace link...
                    www.myspace.com/patricia_luvs_matt


                    Patricia

                    In Memory of My Father (Lawerence) 1/25/2007

                    Procedures:
                    Interstim Sept 2001
                    1st InterStim Removal May 2005
                    2nd Interstim Implanted May 2005
                    2nd InterStim Removed March 2007
                    Hysterectomy 1999
                    Tubes Tied 1997
                    C-Section 1996


                    Me and my kids


                    Taylor (my daughter) Me and my daughter My son Cody and Taylor

                    Comment


                    • #11
                      Hello and Welcome Elamar...I do not have IC but it looks as though my wife does (I posted our story in the "Newly Diagnosed" forum). We live in New Jersey so we are lucky to be close to a few of the better known IC specialists. My wife has an appointment with Dr. Hanno of UPenn in Philly in April...we are keeping our fingers crossed that he will help us...over the past year we have been through the dr. carousel (pretty frustrating isn't it?!?)...until finally he was recommended to us by a triage nurse at UPenn hospital...The OB/GYN at UPenn recommended Dr. Whitmore (Graduate Hospital in Philly) as well if we didn't want to wait til April for Dr. Hanno. Both of these doctors are well-respected and on the cutting edge of IC treatment...so if you don't like her than you can try him and they are basically about 5-10 minutes away from each other...we are lucky to be able to see these great doctors. Also, if you go to "Search Forums" you can search by each name and get some info from people on here who have seen them...I was able to find some good input...good luck and I hope you feel better soon!

                      Comment


                      • #12
                        Hi Elamar.
                        Sorry you are dealing with this disease. You are not alone. I also am married and have a son, and my life has come to a halt because of this disease. My hubby is very understanding and so I am lucky there.
                        It is great that at least your doctor is referring you to someone else who may be able to help. I would say that if you felt that much worse after the second DMSO instill, then it is not for you. You pretty much know your own body. It is frustrating because there are not alot of treatments available for this disease. I just did my first instill using the more modern drugs which is a cocktail of meds including, heperain,marcaine,kennalog,and biocarbonate. They are suppose to stop the pain right away. Well, it made me not able to pee and it was awful for me. They had to cath the stuff out since it swelled me up and I could not pee the stuff out at all. So you see, everyone is different.
                        Good luck at this new doctor. I hope he/she can help you. Do you ever use a heating pad to help with the pain, that might help some.
                        Jen

                        Comment


                        • #13
                          Welcome elamar. I am not going to pity you and I say, "I know how you feel," because I don't. I have no idea how isolated you feel, I have different symptoms, and I have never had those treatments. No one is really in your "boat" and I am not going to say that I am in the same one because I hate when people say that to me. You have the right to frustrated. All I can say is that and there are people is worse condition. I have to say I hate it when people tell me that, but at the same time it kind of makes me feel better. Hahaha. Sorry if you don't find that humerous or the least bit amusing and sorry if that didn't help. Maybe I am going insane because I never really leave the house either. Hahahaha. Anyways, everyone is always here if you need support (hmmm...what else positive can I say?) and sometimes all we need is a place to vent. At least you have been diagnosed and now what is going on...I mean...there must have been a long time that was much worse when you had no idea what was going on. Anyways, I hope you feel better ( and I hope everyone feels better) and I wish you the best of luck with the new doctor!!
                          IC Awareness

                          Comment


                          • #14
                            Hi and

                            Sorry you are suffering with this as we all are. I know that at first the DMSO did help me, in fact it put me in remission a few times, so this past summer we tried it again, however, it didn't work for me. So for the meantime, we are just sticking with the hydros- which we just had another one (I have one about every 6 months or so) and pain medications and Elmiron which I have been on since about 1998 and diet which seems to help. I was dx with this back in 1992.

                            I am blessed with a wonderful husband and 2 grown sons who pretty much help around the house. (and of course my little girls--4 legged kind- they seem to understand when their mommy is under the weather).

                            I still work full time, as I really can't afford not too. When the pain gets too much for me, I slow down some at my job, and my bosses seems to know this but that is ok, as when I'm feeling fine, I'm at top speed. I'm able to keep all of my doctors appointments, try to keep them late in the day, don't have too many that have to do with my IC, in fact hardly have any that have to do with my Uro, as the only time I see him is when I have my Hydros, but I have other appointments that I must keep and they let me work around them.

                            Glad you are going to see a good doctor. Good luck. Let us know the outcome.

                            Comment


                            • #15
                              Mary,
                              What a nice post, and it is good to know that some people are helped by DSMO. We are suffering from this IC, but we do all present a bit different, so it makes sense that different treatments react different on each of us.
                              And we do need the suport and understanding of each other, and keeping the message positive when answering a post does help in my humble opinion!
                              I hope we all get well, no matter what level we are in at the moment with this changing disease.
                              Mary, you give a message of hope and and that is very kind and encouraging to me as well!

                              Katheryn

                              Comment

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