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  • Bioidentical estogen estriol

    I am 56 y/o and presently have debilitating IC. It started when I was a little girl sporadically on and off for a couple years. My parents thought I was getting a bladder infection but mom would put me in a warm tub and have me drink water and the burning would go away usually within 8 hours. They took me to the doctor who said I was wiping incorrectly. This was untrue and confused me but I was a good child and didn't argue. One day these bouts of sporadic IC stopped and stayed away for many years. I ate and did as I pleased. They didn’t came back till at 22 I had an awful bladder infection and from then on I had mild issues on and off but always recovered. I was told by doctors that I just had bladder infections. I noticed that certain foods made me have a “bladder infection” so I simply kept away from them if I was feeling tentative.




    I had 2 children via c-section, and lead a healthy lifestyle. At 42/43 years old in 2005 I had my first big IC episode. It began with a bladder infection that I thought kept coming back. I went to multiple doctors including urologist, I had multiple tests run, had my kidneys scanned, with no proper diagnosis. Finally I took myself off all the antibiotics and decided to just eat mostly salad, plain yogurt and nothing spicy. I lost weight - was 5’6” and 111lbs. It took 5 months for me to get some normality in my life and for about 6 1/2 years I was pretty good. Could exercise, dive, play sports, drink red wine and coffee, eat what I wanted in moderation staying away from certain irritants - but I was still undiagnosed.




    In 2012 I was 49 years old and perimenopausal. It started with a terrible bladder infection which cleared up initially with antibiotics. Then it seemed to come back and just got worse and worse. Every doctor I went to treated it as a urinary track infection or yeast infection - even without the evidence of infection! I drank gallons of cranberry juice and took cranberry pills, I took massive vitamin C and ate yogurt, tried different antibiotics and rounds of Diflucan. After 4 months of agony and being in a wheelchair, I found a good knowledgable doctor who told me I had ic and was put on the ic diet- but it was too late. I was so damaged I was bedridden for four more months. Finally I was able to move and was referred to IC Dr. Pecht. I began taking Cystoprotect, Glucosamine with MSM, quercetin, and having bladder installations with heparin. After 3 months of instillations I went back into remission for three years but I stayed on the supplements and still had to watch my activity, and stuck to the ic diet.

    In 2016 after being in full menopause for one year I had a bladder infection and came out of remission and was mostly bedridden and housebound for eight full months. Bladder instills didn't work this time - but I seemed to get better with physical therapy. I was in remission for less than a year when I had an attack from unknowingly eating autolyzed yeast in my nondairy cheese.




    Here I am over a year later and I am still mostly house bound. I have not been able to get well like before and it has been very hard. I am blessed with an amazing family who have picked up the slack. Recently, on good days I can be up for about 20 to 45 minutes a stretch. As of lately I've been using estriol transdermally. It seems to be helping - estradiol did not help (and is made by terrible means). I am trying physical therapy still but it hasn't really helped as it did in the past and getting there is difficult - I cannot drive.




    I highly suggest women who are in menopause with IC try the estriol. Is a bio identical safe estrogen unlike estradiol which is from the urine of abused horses. I get mine from a compounding pharmacy. My life at this point is on hold since I cannot bend, do anything slightly strenuous, carry, take stairs or inclines. I cannot do the simplest of tasks like laundry or dishes or vacuuming (I actually like cleaning my house). At one time I was vital and athletic - I am now thin and fragile. I cry - and hide it. I have better days and bad days - I have some sort of pain every day. I won't give up hope though - I will get well someday.

  • #2
    I wish I could help. Have you tried keeping a diary, noting time of day, listing everything that goes in your mouth, urinary frequency, activities, even what soaps you use.
    You may identify some things that increase symptoms by using the diary as a reference.

    You might also be helped by a pain management specialist.

    I do hope you feel better soon.

    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
      Thanks Donna, I have notebooks full. Cannot find a pattern except physical activity. Today can barely move.

      Comment


      • #4
        I hear your pain but what I discovered was that food was the biggest irritant. Tea, spicy, vinegar, smoky, acidic, soy sauce & chilli are some of the biggest foods that I had to avoid. What one can learn from our lesson with IY, is what you eat. If you ate something, and if you have problems, it is always what you have eaten.

        Comment


        • #5
          Thanks Umah but I haven't eaten any of those items in years. I can eat very little.

          Comment


          • #6
            So sorry to hear this. That sounds beyond awful. I wonder if it's time for second/third urology doctor opinions? There must be some side issue that's getting missed.
            Diagnosed with IC in 2005, PFD in 2016. My sister has had IC for 21 years and our mother over 30. 66 years of bladder fun combined!

            Comment


            • #7
              It's been 1 year 3 months - and I am starting to finally see a change. ALittle over 3 months ago I started to do transdermal Estriol (NOT Estradiol). It seemed to help my vaginal and urethral atrophy and I was finally able to do bladder instills. I had tried to do them earlier but my urethra spasmed so badly that the instill just ran out of my bladder. So far I have had 8 heparin, bicarb, lidocaine instills since July 3rd AND THEY ARE HELPING!!! For weeks I went up and down - sometimes the instills felt like they made me better, sometimes they made me feel bad but I stuck with it. I can stay up on my feet for over an hour straight now and I can do alittle light cooking, fold clothes, wipe down the counters and do filing. These may seem mundane to some of you but I am rejoicing! The catheter used is a single sided infant catheter and my urethra is swabbed with betadine to ensure I do not get a bladder infection. I still have some sort of pain everyday - but it is not as frequent and less pronounced. I will continue my instills and Estriol and post my progress. Also I have never strayed from IC diet and I still take l-citriline (you must open capsule and put in mouth for it to be effective) quercitine w/ brom, glucosamine w/msm, 2cystoprtek a day.






              Comment


              • #8
                Thank you for the update. I'm glad you're improving.

                Warm hugs,
                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

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