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  • Lupron and IC

    I have a question: I was given depo provera and it seemed to help my pain a lot! They thought that meant I had endometriosis of the bladder and not IC so they put me on Lupron which lowers both estrogen and progesterone and now I am in TERRIBLE pain! Has anyone ever had this happen to them? I cant figure out why provera worked and Lupron did the opposite! i would appreciate any insight you have.. i am 25 but think that this might be hormonally related.
    Thanks!
    Christine

  • #2
    Wow - Nice to know it was not in my mind. I was officially diagnosed with Endo in June 2006. (Suspected for almost 10 years prior). Since I had been on a 6 month round of lupron shots once before (trying to rule in or out on the Endo without lap), my doctor went ahead and started me on a three month shot. Within a week I was in so much pain in my bladder, I could not stand it. I finally went to Uro and was diagnosed with IC just this month. I am suspecting I have had IC all along and the Lupron caused a major flare because my pelvic pain (that I always thought was the endo) is almost completly gone when I take the bladder meds. There was a shadow in my bladder when I had the office Cystoscope so looks like I will end up getting a biopsy. Possible it is Endo in the bladder along with IC.

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    • #3
      Please call your doctor today and let him/her know how you reacted to the lupron.

      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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      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.

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      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]

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      • #4
        Lupron also made me worse. In fact, it was after my one and only Lupron shot that I ended up in the ER with the symptoms of a bladder infection. They brought in a uro who promptly scheduled me for a cysto/hydro and that is how I was diagnosed. -Vicki
        Blessings and Hope

        Current Meds.
        OFF MY MEDS
        Vivelle Dot: .10 changed every 72 hours
        Compoounded Progesterone 25mg/night

        Current Supplements
        Hydroeye: 2 pills AM

        Diagnosed
        1995: Endometriosis
        1998: Interstitial Cystitis
        2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
        2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
        2012: Laparoscopic Removal of Adhesions and Staples

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        • #5
          I thought I should further add that I had a Laparoscopy within a month of this spell with a well-known lap./endo doctor. I specifically asked him to look for endo on the bladder. He said that there was endo but none on the bladder(1998). In 2005, I decided to have a hysterectomy as i could no longer stand the pain which got worse from ovulation until about the second day of the period. So, what did my doctor find(different doc than in 1998)- ENDO ON MY BLADDER! My left ovary was stuck to my bladder with it. This new doc who is just your average gyno said that there was no possible way to get it all off of the bladder. A noteworthy point is that I hd an abdominal hysterectomy, not laparoscopy. My theory is that the first doc just couldn't see all of my bladder. Also interesting is the fact that for eight weeks I had a total remission of all bladder symptoms. That is the first time I had ever been in remission in almost ten years!!!!!!!!!!!1
          Anyhow, I only had a partial hyst. in 2005. Six months later I was in pain again developed a grapefruit size cyst on the remaining ovary so I just wanted to get it out and be done with it.
          The same doc from 2005, goes back in Abdominally and this time finds my bowel is stuck to my bladder with endo. Also, there is endo on my ureter to my right kidney. So he brings in two other surgeons. One guy re-sectioned my bowel and the other, an oncology surgeon very carefully excises the endo off of my ureter. Once again, I had about an eight week remission.
          My bladder is still better than before the hysterectomy. However, I am back on all my meds. 2006 was the best, most pain -free summer I have had in about twelve years. I felt like a million bucks. Unfortunately, I feel like the endo is starting to come back so I am thinking about going to an endo center where they have more experience with bladder endo. My doc seemed either conservative,under-confident or lacking the skills needed to excise from the bladder.
          I hope this helps you sort through what is going on with your body whether it is endo or IC.
          Blessings and Hope

          Current Meds.
          OFF MY MEDS
          Vivelle Dot: .10 changed every 72 hours
          Compoounded Progesterone 25mg/night

          Current Supplements
          Hydroeye: 2 pills AM

          Diagnosed
          1995: Endometriosis
          1998: Interstitial Cystitis
          2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
          2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
          2012: Laparoscopic Removal of Adhesions and Staples

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          • #6
            I had 3 months of lupron with no pain. However, no I am in menopause (ovaries stopped working after hyster) and in a lot of pain. Lupron causes artificial menopause so I it could be the reduction in estrogen.

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            • #7
              I heard from someone that was diagnosed with Endometriosis that they didn't get IC until they started Lupron. Their doctor said it "dried up" the lining of the bladder. So since my doctors are talking about endometriosis with me, they said to take Elmiron (I think) with it. I hope I didn't get that message messed up (you know, telling someone else's story). Maybe ask or look up Lupron on Endometriosis sites too?
              [SIZE="1"][B]Be well, Alyssa :hi:[/B]

              [

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              • #8
                Hi Vicki.
                When they took out the endo, did they do an excision? I have read that this is the best way to go as far as when having endo removed.
                I also likely have endo, but dont want to have the laproscopy as I am afraid it will make my motility issues I already have in the stomach worse. I was told not to have any abdominal surgery unless it is absolutely nessasary. I was thinking about trying birth control pills to see if that would help the endo. I was also offered lupron, but was to scared to even go on that stuff after what I read about it.
                Also my gyne said that they could burn the endo away or take it out, but I was also told by my older gyne( the one who actually delivered me and she delivered my son as well), she said that when they take endo out, it almost always will come back and usually worse than before. So I am really up in the air on what to do if there comes a time where I need to have it removed.
                I am sorry you went through all that, but am glad it made you better.
                Jen

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                • #9
                  I am on my 8th month of Lupron. I also take Norethindrone Acetate for add-back therapy. Lupron has worked well for me considering I don't have to deal with a period every month. No period= 1 less flare each month, no heavy bleeding or horrible cramps. If you think the Lupron is making your IC worse, talk to your doc about stopping the injections. If you are on the 3 month shot, you will be stuck with the possible side effects until the Lupron wears off. I would not take any birth control/endo treatment that contains estrogen because high estrogen levels have been shown to cause IC flares.

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