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  • Help I have all these things going on with my body

    Hi, my name is Laurie and I have been diagnosed with IC Cystitis and endometriosis stage 4.

    I am having a very hard time finding out everything that bothers me and feeling pretty frustrated. I have no idea what I can eat and what not to eat, because I noticed that every IC patient has different foods that bother them.

    I am also have a red sensitive burning scalp that gets irritated after I use shampoo. I noticed that my hair is falling out big time in the front of my hairline.

    Has anyone of you ever had this experience and do you know what I can do for the hair loss and burning scalp? I think it maybe the vitamins and shampoo that I have been using. Do you have any suggestions about what shampoos or vitamins I can use with this condition? Any advice can get would be appreciated.

  • #2
    Stay on the IC diet do not cheat, it takes time to find out what you can tolerate.

    Are you on elmiron? Elmiron can make your hair thin out,you might want to try a baby shampoo.

    Also, you need to get with your urologist about your redness on your head.

    It is possible to be allergic to the shampoo you are using.

    I hope my suggestions help you and keep in touch, this forum is very informative and we are all family here.

    I wish you good health and hope and pray you find the answers real soon.
    <center>
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    • #3
      Hi Briza,

      Thank you for the warm welcome. I was diagnosed about 8 months ago, and I haven't been really serious about the foods I ate until now. The symptoms are getting worse and do not want to continue like this.

      I will print out the list, thank you for your support.

      Comment


      • #4
        Hi Linda May,

        The medication the urologist gave me is Amitriptyline. I don't think it's the medication though, because my hair has been thinning out and my scalp has been burning for about a couple of years now. Before I was diagnosed I thought it could be just adry scalp, but it's definitley getting worse.

        It's so hard to stay away from all these foods that I have loved for years.

        How did you all do it?

        Thank you for your prayers and support.

        Comment


        • #5
          I know someone that has a similar scalp problem as you are having. She has seen a dermatologist. They seem to think it might be excema, have you ever had that in any other place on your body? It probably isn't related to your med, does it seem to get worse with stress? Interestingly many of us with IC do have sensitive skin issues. Not that IC and that go hand in hand but it is another one of those problems that as a whole we tend to have. Have you tried any of the soothing dandruff shampoos? There are different ingrediants in them and some are better for psoriasis and excema, not that you have those but those ones should be more soothing. I would say you might need to see a dermatologist in regards to that.

          Hope you find relief soon,
          Sandra
          Link to the patient information, everything from What is IC? to Disability
          http://www.ic-network.com/patientlinks.html

          American Urological Association Clinical Guideline
          Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
          http://www.auanet.org/content/guidel...ent_ic-bps.pdf

          Comment


          • #6
            We have lots of skin allergies in our family and have found that all of us can tolerate Neutrogena shower gel, bar soap, and shampoo. You might want to give it a try. I know skin problems are sometimes difficult to whip --- I hope you have success.

            Donna

            p.s. to the IC Network family.
            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

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            • #7
              I dont have the hair loss issues, but I have had a very sensitive and irritated scalp. Also, (and this is gross), but my scalp had a yeasty smell that didnt go away even right after I shampooed. I tried all kinds of dandruff shampoos, baby shampoos, etc. I also was deal with recurring yeast infections, so I thought it might be related, but wasnt sure. Anyway, I read online about others with this same problem who tried using antibacterial soap as a shampoo. They said to use it first. Leave it on for about 5 minutes and then rinse and shampoo with a dandruff shampoo. Then, follow that with whatever conditioner you wanted to use. It sounded crazy, but I had some on hand and figured I didnt have anything to lose, so I tried it. Sure enough, it works for me! I do this every other time I wash my hair, (or, if I have missed a session, then I use that formula.) It works for me and my scalp is no longer sensitive.

              If it is really bothering you, or you are losing alot of hair, (and you know your meds arent causing it), you should probobly ask your Dr. about it or get a referral to a Dermatologist. They may be able to r/x a prescription shampoo to use. I dont know. But, it would be worth a shot.

              Hope something works for you!
              I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

              D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

              Meds: Estrogel (due to total Hyster)
              The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


              (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


              John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

              Comment


              • #8
                I have to urinate 4 times an hour every hour on the hour.

                When I have a flare-up lke this I feel very tired and unable to focus at work.

                My bladder just feels full all the time and I feel like i have to urinate all the time.

                There is no pain or burning.

                It has gotton so bad though that I have had leakage.

                The only medication I am on is the amitroplyn. The doctor did want to put me on another, but My husband and I are hoping to get pregnant and the medication is bad for a fetas.

                Comment


                • #9
                  [QUOTE=amaranthe;569574]I dont have the hair loss issues, but I have had a very sensitive and irritated scalp. Also, (and this is gross), but my scalp had a yeasty smell that didnt go away even right after I shampooed. /QUOTE]


                  Amaranthe,
                  My daughter is 20 and she has problems with back acne. Her's itches and drives her crazy. She went to the dermatologist and they tested it and said it was yeast and gave her a wash to use. After the wash ran out she never replaced it and started to have problems again. I read in a magazine that we can have yeast on our scalp and then when we wash our hair or sweat that yeast migrates down the back causing the acne. So this derm recommended that you use a dandruff shampoo once or twice a week and it would help. She uses the medicated kind with the coal tar in it and it works great for her. So, yes, it is yeast, who knew???
                  Link to the patient information, everything from What is IC? to Disability
                  http://www.ic-network.com/patientlinks.html

                  American Urological Association Clinical Guideline
                  Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
                  http://www.auanet.org/content/guidel...ent_ic-bps.pdf

                  Comment


                  • #10
                    sailaway- lots of Dermatologists r/x abx as a first line treatment for bad acne. They say one of the causes is an overgrowth of bateria. You should have her try washing with antibacterial soap (like Dial) or the drugstore generic. It helps prevent bacterial growth. I would use it 2 x a day. It is a cheap thing to try, so if it doesnt work, you haven't really lost anything.
                    I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

                    D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

                    Meds: Estrogel (due to total Hyster)
                    The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


                    (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


                    John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

                    Comment


                    • #11
                      Sailawaygirl and amaranthe thank you for sharing your experiences with me. It's helpful for me to hear that other people have had these problems too.

                      I have an appointment with the dermotologist on the 8th of March, so hopefuly they can tell me what it is. In the mean time, I will try these different products you have suggested.

                      I will let you know if they work on me.


                      I love Jesus too!

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                      • #12
                        I am happy that you will be seeing a dermatologist. He/she would be best at giving you an accurate diagnosis. I also had scalp issues. It turned out to be psoriasis of the scalp.

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