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anyone with pain from ic and adenomyosis

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  • anyone with pain from ic and adenomyosis

    My doctor suggests I have adenomyosis and I tested positive for ic. How can I tell the difference in the pain from a flare up of ic or if it is pain from the adenomyosis. A week before my period I have cramps that feel like labor pains and then the week of my period they are so bad I can't stand them. The pain radiates down my leg and and my lower back kills me those 2 weeks. I have heavy bleeding and passing huge clots. But then all month long sometimes I have just cramping in my lower abdomen. Someone help me thinking of hysterectomy, but don't know if it is a flareup of ic.

  • #2
    you will find a wealth of info within these pages. Your doctor "suggested" you have endometrosis, not "diagnosed" you with it. first off you want to know what is wrong before you jump into a hysterectomy. If you go in and have one regardless if you have it or not it dose not mean that the pain will subside. My best suggestion is to have a lap ddone and see if you do and have it removed then, see if it helps and move forward from there.
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      First of all, I'd like to say to the IC Network.

      I too would want a definite diagnosis before considering a hysterectomy.

      Stay safe

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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.

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      • #4
        The only way to diagnose adenomyosis is after hysterectomy and if they're wrong there's no way to put it back.

        I had a hysterectomy and thought I had adeno and all because of the same symptoms you described. It turned out my uterus was just fine, I did have endo but not of the uterus.

        Three years after my hysterectomy I was diagnosed with IC and that's what it has been the whole time. I'd never have the hyst if I could do over. Early menopause is hell and ages you far more rapidly.

        Hope this helps and hope you find your answers soon,


        • #5

          I pretty much have gone thru what you are. Have you tried birth control pills? They helped with the 2 weeks of pms pain every month--knocked it down to about 6-7 days. I took BC for about a year before I had an Endo Laparoscopy last Nov. Positive for light endo with an enlarged uterus which was sitting on my bladder (Dr thought Adeno). Also found a large hernia. Since I didn't have significant improvement with the lap--I had a hysterectomy (kept ovaries) 4 wks ago-also had hernia repaired and they found another hernia while they were in there. :woohoo: All I have to say is "please" let this help with the pain.
          As for telling the difference between bladder and uterus--I have a hard time describing it. My bladder seems more intense/constant. Cramps (uterus) kind of go up and down like labor pains contrations. My lower back/hip pain aches the same for both. I have pain down my left leg/thigh/skips down to ankle but I think that's due to the IC. I'm sure as soon as I'm healed in the pelvic area I'll have a better idea of what's going on. I also have lower back and hip problems so it's so hard to tell where everything is coming from. I start physical therapy for my back in June--or as soon as I'm healed. I'm taking it one step at a time.


          • #6
            My IC was dx way before my Adeno was dx, but I had pain all month long except during my period. I had every test known to man, tried BCP, etc. One of the doctors did a vaginal Ultrasound and suggested Adeno (you could see something inside my uterus); and suggested a hyster. Since I was 40 had my tubes tied, etc. I said go ahead since nothing else was helping. As to pain, between the 2, sorry, I can't remember--its been 7 years, the decision is yours and your doctors. You just want to make sure this is what you want. Good luck. Let us know what happens.


            • #7
              I have adenomyosis which was diagnosed by the gyn-oncologist who removed my ovarian tumors. I had benign tumors removed twice once by traditional lap and once by da vinci robotic surgery. The second surgery I was full of adhesions so he also had to remove all of that mess too. I have not been diagnosed with IC yet but I am also wondering how to tell the difference since I have adeno.
              Conditions:Migraine, Epilepsy, Adenomyosis, Left Hydrosalpinx (inflamed,blocked fallopian tube), Neurogenic, Overactive bladder
              Myofacsial pain disorder/Pelvic floor dysfunction