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  • Stupid Immune System

    So I have been doing a lot of reading, and found that there is a tie between Edometriosis and IC. Which made me raise an eyebrow since I have both, well edometriosis is taken care of post hysterectomy. But it got me wondering if there were other things that might be linked. I have a horrible immune system. Everything from alleriges to bug bites getting infected. I just wondered if I was the only one. Suffering from a huge flare right now, I find myself feeling as if I have the flu. I have had hair loss, brittle nails and what ever else you can think of. I would love to hear back from the rest of you to see what other health problems you guys have to see if there is any corrilations.

    Please let me know what that the rest of you have experienced.
    Medical History: Endometriosis, Epstein Barr, Confirmed Severe IC with Hunner's
    Current Medications: Premarin, Gabapentin, Soma, Ambien, Hydrocodone, Antihistamines, Prestiq
    Past Treatments:Cocktail Installations
    Looking into: Vitamin D, Vistril and DSMO

    "I can do all things through Christ who strengthens me"

  • #2
    Endometriosis and IC

    I had Stage 4 endo, had hysto, endo came back. I also have IC. I had the symptoms in my teens, but was never diagnosed until a few years ago. I think it has something to do with the body processing estrogen. Estrogen causes me to flare really bad.
    Diagnosis: Endometriosis, IC, PID, PCS, PFD, PN/PNE, VV, fibro, Pelvic Adhesions, DDD, Hysterectomy at a young age. Unable to take estrogen, causes pain—extremely bad pain.

    Thankful: For all the support and comfort I receive on this site.

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    • #3
      There are several well known conditions associated with IC. I also have FM, IBS, migraines, allergies, autoimmune hypothyroidism. The NIDDK is doing ongoing research into this. I was told by my uro at diagnosis that some IC patients just have the bladder problems & others have a more sytemic type. Lucky us.......haha.

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      • #4
        I just have IC.

        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

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        • #5
          I am gonna figure you have realized you are not the only one by now. Donna claims to be one that just has IC, but I don't many IC'ers that can state that. Goodness! Oh! I just heard some thunder then. (as a thunderstorm is moving into the county) OK. I do have more than IC only. It is not the reason why I am on retirement disability through the Teacher Retirement System of Georgia. (as I work over 13 years with it) In fact, the reason is a diagnoses that may have nothing to do with the IC. Oh, yeah! I will list now. IC, CFS, IBS, proctitis, & degenerative disc disease.(and sinus/allergy trouble) By the way, I have hardly had any diarrhea since I have been having the proctitis problem. OK. We do have a severe thunderstorm; therefore, I better let that be all now.

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          • #6
            It is great getting to hear all of the other stories, and to find out I am not the only one. Not that I want any one else to experience all these problems, but relief to know it is not all in my head. I truely belive IC is an autoimmune disorder. When I look back at my medical history and put everything together it starts to make sense. I was at the ER today becuase I have a vaginal wall prolapse, that I believe was caused from my current flare. I have had intense pain and pelvic muscle spasms. My doctor had me go get checked out just to make sure there were no problems that needed immediate medical treatment. I didn't want to go, becuase I have had nothing but horrible experiences with the ER. Most of the doctors are not educated in Ic complications. They did very little...just gave me more pain medication and said follow up with your doctor. My current flare has been very difficult. I have had pain, difficulty urinating, sever allergies, skin rashes, extreme abdominal swelling, and major spasms. I have also been running a low grade fever and have no energy. I wish there was more to be done other than muscle relaxers and pain medication. I will be thankful when us IC'ers have more options.
            Medical History: Endometriosis, Epstein Barr, Confirmed Severe IC with Hunner's
            Current Medications: Premarin, Gabapentin, Soma, Ambien, Hydrocodone, Antihistamines, Prestiq
            Past Treatments:Cocktail Installations
            Looking into: Vitamin D, Vistril and DSMO

            "I can do all things through Christ who strengthens me"

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            • #7
              I have to use free and clear laundry detergent, unscented soap or my skin will burn (and urethra). Also, when I walk down the grocery store isle where the laundry detergent and fabric softner is, my eyes burn-this never happened before I had IC. I have low Vit D, low iron and I have low estrogen too low for my age, I was originally tested with low estrogen when I was 35 and now I'm 40 and have to take hormones. My Gyn said I am taking alot for my age. If I don't take them, I have hot flashes and I itch so I have no choice. I know it's IC related. I once read where they did a study on cats who had IC and cats who did not, the cats with IC had low estrogen, the cats without IC did not. Now I have Costochiondritis (I don't think it's related to IC, although it usually only lasts 3-5 weeks and I've had it for 1 1/2 yrs). I have heard of other people lasting longer than 3-5 weeks. Also, you mentioned your immune system. I am seeing a holistic Dr. and she has me on a whole food vitamin which does not cause me any flares as all other brands did. It's called New Mark Women's Synbiotic Nutrients. It is quite expensive though $50 for 1 month supply, I also take Nordic Naturals Pro Omega Fish Oil, Hawthorne(suppose to boost immune system) and a probiotic. My hair was falling out with Elmiron for years (I would see alot on the bathroom floor, I wasn't going bald or anything) so I switched to Cystoprotek. Hope you feel better soon!
              Diagnosed in July 2003

              Meds and supplements:

              Desert Harvest Aloe Vera
              Prelief as needed
              Megafood multi
              Fish oil (Nordic naturals)
              Probiotic (Mega food mega flora brand)
              Vitamin D (Carlson's solar gems 4000 IU)




              Favorite Quote:

              "Dance as if no one were watching, sing as if no one were listening, and live every day as if it were your last."

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