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  • question to Donna

    I'm sorry Donna, I always seem to be asking you questions. The latest: Do you think that your hysterectomy was the cause of your ic? I've been contemplating having one, for an unrelated condition, however, if it would make my ic worse, then I wouldn't even consider it. If you could answer back, I'd surely appreciate it.

    Thanks, Gabi

  • #2
    Hope you don't mind my butting in here, but I thought I could give you more perspective. I do know that a lot of ladies think that their hysts set off their IC. Now, I am a rare one, I believe I have had IC all my life. I was diagnosed with bladder problems as just a tiny baby, and have never gotten better. But my hyst not only did NOT make me worse, I believe it made me some better. Is my IC any different? No not really. I can actually feel bladder pain for the first time, which of course I do not like. But the pain isn't so bad to me, so I can deal with it. But having the female problems gone is HUGE deal. I feel better overall. That alone makes the IC seem better in the long run. I am not dealing with the huge problems my female organs were giving me.

    If you have the hyst, you cannot know for sure if it will make the IC better or worse. There is just no way to tell. Go for it if you find the potential benifits outweigh the potential risks. You will know how your body reacts to the surgery after you heal from it. (sucks doesn't it?) For me not having a period that was always a few hours away, the horrible hormone induced emotional problems, and the terriable endo pain was reason enough for me. That is all that got solved from the surgery too, but what a wonderful relief!

    I do hope you find relief yourself soon. Lisa
    God is our refuge and strength, an ever present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging......The LORD Almighty is with us the GOD of Jacob is our fortress." Psalm 46:1-3,7

    May God bless our nation


    • #3
      I do strongly suspect that my hysterectomy was at least partially responsible for my IC. I would like to emphasize that I had some real problems following the surgery and ended up having a second surgery to release the adhesions from the hyst. I also think a contributing cause for my IC is that after the hyst, I wasn't given adequate instructions on how much I could do and I did too many active things during my recovery.

      Also, there are thousands of hysterectomies done every day and a very small percentage later have problems from the surgery.

      The decision to have a hysterectomy should depend on the reasons for the surgery --- in most cases physicians will not do the surgery unless it is essential to the wellbeing of the patient.

      Would I have the hysterectomy if I could make the choice again? No. But my reason for the "no" is that I now know the surgery was not necessary. What I had were fibroids, which usually begin to shrink and cause less problems at about the age I had my hysterectomy.

      If anyone has a real reason for a hysterectomy, I would still encourage them to have the surgery --- and to be sure they take it easy during the recovery period.

      Warm hugs,
      Stay safe

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      • #4
        Food for thought.

        Thanks for responding ladies.



        • #5
          Hi Gabi,
          I thought I would add more "food for fodder"!!
          I had a hyst. when I was 31 due to endometriosis. My gyn did try other options but nothing worked so I had the hyst.
          I had my first UTI while I was still in the hospital and that was the start of years of bladder problems for me ending in a diagnosis of IC three years ago. Also, because I had one ovary removed when I was sixteen the second one "shut down" at the time of my hyst. so for a period of 6 months I was receiving no estrogen which didn't help my bladder, vagina, bones, etc. (I developed severe osteoporosis due to this and a strong family history of the disease.) So I would advise to keep a watch on the hormonal element not knowing how old you.
          I also had to have another 3 surgeries after the hyst. due to the formation of adhesions which can be very painful.
          In my case, I don't feel I had any alternative but to have the hyst. but I know it was the start of a lot of health problems for me for the rest of my life.
          I know a lot more now than I did then. You might like to read the book "Screaming to be Heard" by Elizabeth Van Vliet. She is an endocrinologist and gives a lot of sound advice concerning hormones, UTIs, IC, etc.
          It might help you make a more informed decision regarding the hysterectomy.

          Good luck,


          • #6
            I am 55 and had my uretrus removed at 24 because of an emerg. C-Section 2 years before. My womb did not heal so I had cramping and bleeding for those 2 years. They did not know what was wrong until they did surgery. I had tried to have a third child before this but lost him. It was for the best as the Dr. said if I had started to grow bigger the womb would have burst and probably lost me and the baby. A year later they removed an ovary from so much pain and suffering because of cysts. I had my first urethral surgery at 26. Finally lost last ovary at 30. I never felt better getting all that out and I have been taking my Premarin ever since with no problems. I have severe pain from my IC but I don't think it was caused from Hyster. Who really knows because I have always had such problems with my bladder and urethra. I think everyone should take each individual case and decide if it is right for them. It was for me but I would not advise either way. My daughter that is 36 has IC and a tumor in her uretrus and cysts on her ovaries. But so far they will not remove them. I worry. I think she would feel so much better. But I have to let her make that decision its her body. My cyst on my last ovary was big as a grapefruit so it was an emerg. Sorry this was so long. I just hope it helps someone. Hugs