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Did your IC start with perimenopause?

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  • Did your IC start with perimenopause?

    I swear mine did...started 6 years ago when I was 46...had a hystorectomy when I was 26 but kept my ovaries. So, no periods or lack thereof to let me know what's going on.

    Told my gyno about infrequent flashes recently, and been tested with FSH test a number of times the past few years. Finally the test showed positive for menopause just a few weeks ago....

    Now what to do???? I hate to start hormones right now, since I just started 3 new meds also a few weeks ago...one is Neurontin. Hate to add another to the mix.

    But here's the thing.... I've been having incredible hot flashes, up to 15 a day and through the night causing sleep disturbance (as if we need another thing causing sleep problems!). It's making me wonder if I ought to revisit this thing with my gyno.

    Been reading up here and lots of you say you've had problems with certain hormone combinations...and read about compounding hormones, etc. If you could help with any of these it would be appreciated..

    1) What info did you give your doc about IC and hormones? Any research studies, etc?

    2) Have any of you tried tofu?? I hesitate since it's listed as a no-no on the IC diet. Have started eating some soy nuts, though.

    3) Does the vagifem cream help with flashes?

    Thanks to all of you for reading my long post. It really helps, especially for a topic like this, to find out what others have tried.

    Here's to some cool flashes!
    Susan
    Positive thoughts and prayers that new treatments for IC will reach all who struggle with this disease,

    SusanC

  • #2
    I've heard that evening primrose oil works wonders for hot flashes. As for a good source of information on menopause, I highly suggest any books by Christiane Northrup. She has some really great ideas.

    Comment


    • #3
      Dear Susan -

      I got my IC at 46 also. It was my belief that I got it because my estrogen was too low. So, I went to my gynecologist and asked for it, but without progesterone. It worked for me and my IC symptoms went away. I am now 52 and have since had a hysto for another problem called adenomyosis (endometrosis inside the wall of the uterus instead of outside of it).

      Let me say, this is not a treatment for everyone and is not without risks (uterine cancer is one, although very small and if followed closely with ultrasounds can be caught early) because you cannot take progesterone with it. The progesterone will undo the beneficial effects of the estrogen on your bladder.

      Unfortunately, you will not find information about this treatment for IC. I have done all the preliminary research on this and sent it to Vicki Ratner of the ICA in Maryland who is trying to find someone to do some research in this area. She believes for some that this is also an area that needs research and further study.

      My gyno is a wonderful man and his wife is my urologist. She didn't think this would work, but it did. He now uses it for other ICers who are in my age bracket who get IC during this time of life.

      If you want any further information or your doctor would like to talk to my gyno, e-mail me at [email protected]

      Hope this has been helpful.

      NancyB

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      • #4
        Hi Susan,
        I'm 26 so obviously my IC doesn't have anything to do with perimenopause
        Anyway, I'm replying because my Dr is doing 2 hormone studies right now. One is about pregnancy and the other one is about hormones. I couldn't participate because I'm on the pill. Hopefully, we'll be hearing about results soon.
        take care,
        Mel
        Melanie
        __

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        • #5
          I also have wondered if my bladder problems
          are hormone related. I was 47 when my
          symptoms started and am now 49. Dr.'s will
          not order estrogen for me because I am
          still having regular periods and my mother
          died from breast cancer at a young age. I
          have to admit that I am leary of taking
          estrogen but nothing else has helped so
          far. Bev

          Comment


          • #6
            Thanks to everyone for your replies. But I now have one more question:

            What type, or brand name, and what strength estrogen did you take that helped?

            You guys are so great! One thing I've learned in the past 24 hours though. My almost continual flashes lasted for 4 days. After I "upped" the Neurontin on Thursday night, I had fewer flashes than before. Only 5 or 6 compared to 15. There must be a hormone connection with the Neurontin.

            What do you think?

            Wishing everyone an IC "comfortable" weekend,
            Susan
            Positive thoughts and prayers that new treatments for IC will reach all who struggle with this disease,

            SusanC

            Comment


            • #7
              No--- I am 16 and have IC.

              Amanda

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              • #8
                Dear Susan -

                I use the Climera patch. You can titrate the dose to what you need by cutting it yourself. The manufacturer doesn't recommend this, but you can do it anyhow. You would be surprised just how much difference a little one way or the other can do. I would get the .l mg one and start with half of that and then add more if you need it - actually .05 is what most gynos start people on and go up from there. I have been on others like Ogen and Premarin, but didn't like them, bothered me in some way. Estrace pills were fine after my system cleared up. You will probably know in a few days if it is helping you. It took me a few weeks for my bladder to completely clear up and another 2-3 months for the rest of my system (bowels, etc.- basically anything that had a lining) to feel right again.

                Hope this is helpful.

                NancyB

                Comment


                • #9
                  Dear Susan -

                  I use the Climera patch. You can titrate the dose to what you need by cutting it yourself. The manufacturer doesn't recommend this, but you can do it anyhow. You would be surprised just how much difference a little one way or the other can do. I would get the .l mg one and start with half of that and then add more if you need it - actually .05 is what most gynos start people on and go up from there. I have been on others like Ogen and Premarin, but didn't like them, bothered me in some way. Estrace pills were fine after my system cleared up. You will probably know in a few days if it is helping you. It took me a few weeks for my bladder to completely clear up and another 2-3 months for the rest of my system (bowels, etc.- basically anything that had a lining) to feel right again.

                  Hope this is helpful.

                  NancyB

                  Comment


                  • #10
                    Thanks for the help.

                    Wanted to let you know that I checked on alternative therapies for hormone replacement. Nothing has been tested and recommended. They still don't know the amounts, etc. to use of soy, tofu, primrose oil, etc. So I will ask gyno about Climera.

                    Any other ideas out there?

                    How confusing! We hear one thing in the media...and another with the real medical authorities and scientists!

                    Sending healing wishes,
                    Susan
                    Positive thoughts and prayers that new treatments for IC will reach all who struggle with this disease,

                    SusanC

                    Comment


                    • #11
                      Dear Nancy B:
                      I was 38 when I had my hysto for fibroids and adenomyosis. Had no problem with recovery, not even one round of antibiotics. My ovaries were left in also, so I had no idea what was going on with my body because my Dr. kept asking me if i were having any hot flashes, and I was not, so no hormone tests were ever done. Then at age 48, I get this huge UTI, My first ever, and THEN they start to do all of these tests and as it turns out I am waaayyy past menopause and have osteoporosis and everything. I have been taking compounded bi estrogen along with progesterone cream and vagifem and feel like this has helped. Wish this all could have been prevented but Drs back then were not interested in perimenopause. I definitely feel that my problem is hormone related.

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