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  • Flaring **** HELP****Need Support

    Hello ladies. I have posted on the boards several times and I can honestly say that I do not know what I would do without this resource. I stated to flare several days ago and for the life of me I can not think of what I might have eaten.......

    I am completely miserable. The only thing that has changed for me in my routine is that I have started taking birth control pills this past Sunday. I had a long meeting with my OBGYN about this as she thought this pill woukd be ok with my IC. She has a friend with IC so she is very understanding. Since I am just newly diagnosed with IC I have been going thru a fury of mixed emotions. Sometimes I find myself feeling sorry for myself and just wanting to be normal again. I want to be able to have a cup of coffee or a slice of pizza like everyone else. Darn. Why me is what i am feeling right now along with anger. My diagnosis of IC came just 2 months after haing had a lumbar/spinal fusion. After 2 months of agony from that I get hit with this. I honestly do not know if I can handle this. I just want this to go away and I know that is childish and silly of me but that is just where I am right now.

    I am so sorry if this has been long but this is the only resource and outlet that I have. My husband is trying to understand but it is hard for him also.
    Thanks for listining to me carry on.



    Sara

  • #2
    So sorry you're feeling bad. Flares can come from a number of thing, the birth control pill, stress, or a uti? I have been feeling like c*&p all week and was racking my brain as to "what did I do wrong" and I'm pretty sure now that its an infection. Its just so hard to tell sometimes between a flare and an infection. That's cool that your doc has a friend w/ Ic. Atleast there's someone who can relate to you. I know what you mean about hubby not understanding completely, no one really does unless they have it, and that's why this site is so wonderful.
    Have you tried a hot bath or heating pad on your abdomen. Sometimes that helps a lot, sometimes tylenol will help take the edge off my flares too. Hope you get to feeling better. We're all in there with you!

    Comment


    • #3
      Sara, I know exactly how you feel! I too was recently told I have IC and overactive bladder. I'm really trying to work through it as well! I feel angry, depressed, hopeless really! I often find myself thinking that I'm only 28 years old and I have to live the rest of my life like this. It wasn't until recently that I found that dwelling on what the future is going to be like wasn't helping me... it was making me even more miserable. I decided to try to be as happy as possible, you know... look on the bright side and know that things could be much worse and there are people out there with far worse things. At least we all have each other through the bad times and even the good! Most of us are lucky enough to have supportive and understanding (well as understanding as they can be) family and friends! I decided to take it one day at a time and give it to God! Since I've changed my attitued, things have seemed to improve. Of course I still have bad days , bad weeks as a matter of fact (I haven't figured out my trigger foods or even tried the IC diet yet, so I always always feel the sensation that I have to pee... blah), but adding stress to the mix is no good. I know you probably already know all of this... I just know it always helps me to hear from somebody else. My husband (who is absolutely awesome) tells me all the time that it will be ok, and the way medicine is advancing everyday, they will find out the mystery of this horrible disease and find something good to help us... just hang in there. Take it one day at a time, and remember, mine over matter.

      Comment


      • #4
        Im sorry you guys are feeling so bad, it is normal to go through all those emotions at first. just try to stay positive..there really are so many treatment options out there. you just need to find the ones that work for you. I hope you feel better soon. try a warm bath.

        Erica

        Comment


        • #5
          Some ICers find that certain bcp's really whack out their bladders. There is a hormonal "link" for many of us so it seems like certain pills play with our hormones in a way our bladders don't like.
          Kim

          Diagnosed August 2001

          Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


          Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

          I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

          *****************************

          “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

          “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

          Comment


          • #6
            I found that birth control pills really help control my IC. In fact, I got IC when I quit a birth control pill I'd been on for years (Necon 1/35). When I went back on it though, I had a bad headache the first day & a 2 day flare. Then it got better. If you've had a bad week though, it's worth talking to your doctor about.

            Not all birth control pills are the same & not all IC patients respond the same way to them, so unfortunately we have to just "guinea pig" (experiment) til we find what works...

            Wishing you better days soon!
            Kadi

            -------------------------------------------------------------
            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.
            ------------------------------------------------------


            New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
            Source - Pinterest
            "


            Current treatments:
            -IC diet
            -Elavil 50mg at night
            -Continuous use birth control pills (4-5 periods/year)
            -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
            -Pyridium if needed,
            -Pain medicine at bedtime daily, as needed during the day several times per week
            -Antibiotic when doing an instillation to prevent UTI
            -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
            -Dye Free Benadryl 50 mg at bedtime
            -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
            -Managing stress= VERY important!
            -Fur therapy: Hugging the cat!

            Comment


            • #7
              Sara,
              I am so sorry that you are flaring. I think there have been others that maybe had trouble with birth control pills. Your flare could also be caused by stress, illness, or a possible infection like kadi.
              Maybe you could discontinue the pills for a bit and see if your symptoms improve. But of course, check with your doc first before making any changes in your daily meds.
              I do hope that you find relief soon, whether you find the source of your flare or not!

              ~Claudia

              "A heart is not judged by how much you love; but by how much you are loved by others."
              ~ The Wizard of Oz

              "If I ever go looking for my heart's desire again, I won't look any further than my own
              back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


              Comment


              • #8
                I just wanted to thank everyone for thier support. Everyone is sucha wealth of knowledge and understanding. I was reading about the bladder instillations and when I was first diagnosed my Dr did one and I felt wonderful. I have been in this flare for almost a week and I think if I do not feel better by Monday i will give him a call and go in for another one.



                Sara

                Comment


                • #9
                  I think it would be a good idea to discuss the BCP with your doctor. There may be a different one you could try. Fluctuations in hormone levels can definitely effect IC symptoms.

                  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


                  • #10
                    Hi, Sara, I'm so sorry you are in a flare (they are awful, aren't they?) and I will repeat what others have said - that hormones do appear to play a role in aggravating IC sometimes, and it's such an individual thing. Some IC'ers are sensitive to progesterone, or at least certain forms of it, and I'm not aware of any IC'ers who react badly to estrogen, but that doesn't mean they don't, it just means I can't remember reading about any. But for sure birth control pills can send you into a flare.

                    There are so many wonderful self-help remedies for flares here on the site, but I think you might also need to be tested for a UTI again, have your birth control reassessed, and be given a pain management consult if your doctor is not willing to treat pain.

                    Hang in there. It will get better for you! Most IC'ers feel good most of the time. They are able to live normal lives, and forget most of the time that they even have IC. Sometimes IC'ers do need to stay away from trigger foods, and that is a loss, but in time you adjust and you are able to be happy again. It is a grieving process.

                    I was given a book by a counselor recently when I was hospitalized which I found very helpful (I am going to buy it now.) Here is a snippet of information I found on the internet about this book. I am also going to check out the other book the writer of this snippet suggests:

                    We Are Not Alone: Learning to Live With Chronic Illness
                    by Sefra Kobrin Pitzele, Sefra Kobrin Pitzelle
                    Paperback - 336 pages, ISBN 0894801392
                    November 1986

                    Pitzele, who has two chronic illnesses, has really put together a very informative and readable book. I liked her lists and her description of where to put things in the grocery cart. This book should be read in tandem with Cheri Register's Living with Chronic Illness--Register does a better job of handling the emotions, while Pitzele does well at practical matters. I also liked her book One More Day, a meditation book for chronically ill people. One drawback--Pitzele seems to be hard-nosed in dealing with feelings, discussing how people should pull themselves together and be adults. I think there is a time for going through one's emotions, and that is why I recommend reading Register's book alongside.

                    ########################
                    Blessings,
                    Lori
                    P.S. another book I found very helpful, and still have, is:

                    The Interstitial Cystitis Survival Guide: Your Guide to the Latest Treatment Options and Coping Strategies (Paperback)
                    by Robert M. Moldwin)

                    I believe it is sold here on the ICN. I think it could be a very helpful book for you, as it has been for me. It's also helped me in educating my loved ones about my disease.

                    Comment


                    • #11
                      Sorry to hear your flaring, I'm a firm believer in this & many other conditions being hormonally linked. I would definitely call & inform your doctor of your flare & the degree that it is. I know that the more estrogen I had the worse everything got for me however from what I've heard from others I'm the opposite of most ICers...working with your doctor is important. I hope that in a few days it improves for you but if it doesn't continue to keep your doctor informed because it may be the birth control pill, it may not. The hardest thing is that it's trial & error, I know that I'm not good @ being patient when I AM feeling good, I'm horrible when I'm not!

                      [FONT="Comic Sans MS"]
                      Jen
                      Medically diagnosed Post Menopause 9-13, unsure for how long! Have: IC, IBS-C, arthritis, carpal tunnel, hypoglycemia, RLS, seasonal sinusitis, depression, anxiety, infertility, hormone imbalance.

                      Please read Screaming to be heard by Dr. Elizabeth Vliet. I do deep cleansing breathing & relaxation morning & night along with doing Yoga everynight now, it's been a huge blessing for my body! Born & raised in Michigan, relocated to Oklahoma in 9/09. Please Don't stop anti depressants or mood stabilizers "cold turkey"!

                      http://www.icawareness.com/stories.html

                      Jen Meier Cascaddan on Facebook

                      Married for 21 years, have 2 cats that are my "boys"

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