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flairing for the last five months-desperate for your help

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  • flairing for the last five months-desperate for your help

    I really need someone to help me. The docs don't know where to turn. When i had IC 2 years ago i would have little flair and a percocets would take it away. My flairs were just pain. No probs w/ urgency and frenquency. And 5 month ago i my second hydro a year after my first. A hydro that put me into the worst flair of my life. It is frequency urgency and a tickle/pain that never has gone away since the moment i woke up from the surgery. It is with me 24/7. I am going to see a pain clinic soon, but i am afraid that they will just cover up my problems. I was wodering what everyone else does when nothing works for frequency and flairs. I tried another hydro a month ago to see if it would help and it made it worse again. I know hydros are suppose to do the complete oppoiste so i i belive this to be muscle spasms. Has anyone ever had this problem and what kinds of meds or natural therpy have you used for flairs associated with urgency. This is a muscle spasm around the urethra area. I'm afraid to do a Hydro again becasue both time it has made it worse. Plese help me. Give me any kind of advice i have tried all the overactive bladder meds. Now i am on Valium and it is working a little but i'm not sure if it is tuley helping or just messing me up so bad it's not quite as noticible. I am so depressed and have no where to turn. The doctors don't understand becasue this has never happened before they say Hydros take you out of a flair not put you in one. The are starting to tell me it might not be part of my IC. I also have alot of burning. I did get to see pics from my last Hydro and all my Ulcers have healed yeah!!!!! I'm on tons of drugs if you refer to my last post in Pain mangement which no one has replied to yet. But i did not include in there the oxytrol patch. Also another question. I heard that yeast infection can mimic a flair or make it worse. Could someone explain that to me . Could a yeast infection cause urgency and spasms. And please reply to my poll about frequency/pain clinics. I'm so scared that this is going to be the way i will be with forever. I'm very sad. Will you try to help ??
    I have also been tested for infection and had none but they put me on a month supply of antibodiotics. Do you think after time things will relax. Sorry to ramble it's just i'm soooo desperate i know some can relate. I am only 22 and want my life back!
    Thanks to all kate angel

  • #2
    If the valium is helping, your problem could very well be a muscle problem --- have you been evaluated for possible pelvic floor dysfunction? If you do have PFD, there are many who experience a lessening of symptoms with physical therapy.

    There are also some smooth muscle antispasmodics you might discuss with your doctor, such as hyoscyamine or urispas.

    Another option would be to keep a complete food and drink diary, along with a voiding record and pain levels --- you may in this way identify particular foods or drinks that are a problem for you.

    Are you drinking enough water? That can also be very important.

    I hope you feel better very soon.

    Sending healing thoughts,
    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
      Donna Donna Donna,

      Thank you for the quick reply! I have started that diary so that i can take it along with me to the plicn clinic. That is a good idea right? I have been watching what i eat, but it seems to make a difference with the pain but not the urgency. Would the almond milk help that everyone is talking about, or do you know any herbal remidies to try. I have about 30 Rx that i don't use because they don't work. Could a yeast infection contrubute to the burning when i use the bathroom or what else could cause that?? Thanks again for your help. I don't come on often but i have realized that you try really hard to anwser everyone asap and that means more than you know. Thank you grouphug

      Comment


      • #4
        If the burning you are feeling feels like it is almost on the outside of your body, you might try some measures to be sure it isn't from a contact --- such things as use plain white, unscented, toilet tissue (and blot; don't wipe), wear underpants with cotton crotches, and rinse a second time to be sure there isn't any soap residue, showers instead of tub baths, and use a gentle soap, such as Dove or Neutrogena. If you wear jeans or slacks, be sure they are plenty loose --- some ICers are more comfortable in dresses.

        Yeast can be a problem, but is fairly easy to diagnose by having a culture done.

        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


        • #5
          Thanks you Donna i have been noticing that maybe i should not use fabric softner. But it is not exactly on the outside. It is inside about in the middle of my uretra. And it usually starts to burn after about first few seconds i start to go. My problem is that after i go it feels like i have to go more before i sat down on the toliet. Which the doctors keep saying is the opposite of what happens to other ICers so i don't know. thank you for the advice though. kissing

          Comment


          • #6
            I think I would try not using the fabric softener on your unders --- some people find it is an irritant.

            If I'm flaring, it always hurts worse after I urinate. I don't think that's uncommon with ICers.

            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


            • #7
              Kat,
              I don't know many of the answers to your questions, but can offer support and prayers, I too am in a terrible flare not like yours in lenght but a week now and I am going nuts! It got so bad that I went to the er the other night and got some relief, but what you have to go thru to get there is terrible. I feel like Ic is ruling my life. Prayers and hugs to you!
              Khouse scream

              Comment


              • #8
                Donna i was wondering. All these symptoms occured the moment i woke up in the hospital from the hydro. Could i still have gotten a pfd from that. Could the surgery cause that to happen. Also when you have a yeat infection can it make urgency worce?

                Thanks kat

                Comment


                • #9
                  Hi Kat,
                  I had a hydro last year and flared for three solid weeks afterwards and needed morophine to cope. I also think though that you may have a yeast problem, I take diflucan (1 capsule) and its gone in 48 hours. Its worth a try because antibiotics can cause yeast problems and the burning can be from that. I have had pelvic floor therapy and I am a real believer in it, can you get to a therapist? The muscle structure could react badly to a hydro (just my opnion). I do have one muscle that is connected to nerves in the urethra and when the doctor presses on the muscle she says its spasmed, and it makes me have urgency. Hope you can find some relief soon, its no fun!!

                  Hugs,
                  Cath
                  One day at a time

                  Comment


                  • #10
                    Kat-
                    I am so sorry that you are not feeling well. I too have been in flares since November. I went in for a dmso treatment last week-which initially put me in to another flare and now the pain is still there, but is not as bad as it was prior. I agree with Donna, drink lots of water and keep a food diary. I'm learning that muscle relaxers, ibuprofen, and my inhalers are terrible for me. I'm still discovering what my 'bad' foods are. I have been in different degrees of pain for the past year-I was diagnosed two years ago-and I understand you when you say that you life has changed. It is terrible being young (I'm 33) and being in pain and then exhausted everyday. Please feel free to email me [email protected] put ic network in the subject box and I will be sure to open it in my junk file. Take care and you will be in my prayers.
                    alana grouphug

                    Peace, Love, Health, and Happiness!
                    Alana

                    Comment


                    • #11
                      Thanks you lotsofgirls for your reply, it always make you feel better when you know others out there care. You also had a lot of great advice for me. Last night I called the doctor and asked for some diflucan, and he aslo gave me some vikoden for the pain. He gave me 2 diflucan and told me to take 1/2 a day, could that be right?? Also i really belief in my case that is what happened with the nerves connected to the ureathra. What did they do to help that/test that. Did it go away? The flairs i used to have were pain and now after the hydro it is all spasming. I think my muscles got screwed up. Could you tell me a little more about what happend at PFD therapy?

                      Thanks a bunch girl
                      KAT

                      Comment


                      • #12
                        Alana Rose,

                        Thank you for your reply. I thought about DMSO alot but i am afraid that if i do something invasive again. Like stick something up into my urethra it may make it worse. See 5 months ago i had a hydro and that is when my probs occured. Then about 1 month ago i had another one because they thought that is what would take me out of the flair (like it is suppose to) But it made it worse. So i don't know, i feel really cornered you know? Thanks for your support and look for an e-mail i may be feeling bad one day and need a friends to talk to.

                        P.S. It means a lot to me that you say you will pray for me. grouphug I really do beleive in prayer and actually right now, me, my mom, my boyfriend, and his mom are all kind of trying this experiment with prayer and imagery to help me heal. I'll let everyone know if it works!!
                        Thanks again KAT

                        Comment


                        • #13
                          Kat, I totally understand what you are saying about feeling cornered! I is the worst thing to look into the doctor's face and see that he/she simply doesn't know what to tell you! Hang in there and I hope that you are feeling better soon. I agree with what you said about being scared to have another invasive procedure. I got to where I am by having an IUD implanted, so I don't want anyone touching me! good luck and I too will say a prayer for you!
                          Take care!
                          Melissa grouphug

                          Comment


                          • #14
                            Thank you guys for all your prayers and support. I'm going to see and accupuncturitst(spelling?)today and then on wednesday i go to see a pain clinic. There is some good news though. I have had a yeast infection for the last 5 months, that is where the burning was comming from so i have been taking 1/2 of 200mg diflucan every day and it's working yeah!!!! wish me luck today! I know there isn't a high help rate with accupuncuter(spelling?) again But i'm gonna give it my best try. And the ppl there sound wonderful. OF course insurance isn't going to cover it and it is 70 bucks. But what is 70$ compared to pain all the rest of my life. Thanx again everyone for your support. Have a happy no hurting day
                            grouphug Kat

                            Comment


                            • #15
                              Hi Kat,
                              PFD therapy is done by a liscensed internal pelvic floor therapist who is also a physiotherapist. They isolate the muscles that are in spasm and use trigger points to release the muscles. Then I go home and take a hot bath and a pain killer, but my pelvic floor has now relaxed quite a bit, and I am able to work on exercises to stregthen it. It has helped alot.
                              Cath
                              One day at a time

                              Comment

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