If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Mirena Users out there???

Collapse

About the Author

Collapse

Rainey I am happily married to a wonderful husband and have three beautiful children (18, 12 and 10). All my kids are involved in sports. My oldest plays Division II College lacrosse and soccer. All of my kids are screened yearly. I am still scared every day they play knowing how many young athletes die. I try to get the word out about knowing family history. Find out more about Rainey
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Mirena Users out there???

    About two months ago I had the Mirena IUD implanted (not using for birth control but for painful, heavy periods as I approach menopause). I was told that the Mirena would end my periods which sounded like a BLESSING to me. However, since having it implanted, I have gained ten pounds (yes, in two months), and it's uncomfortably around my mid-section (already overweight). I found my ankles swelling a couple days ago and I'm very fatigued. I also had to sleep partially propped up last night because I felt like my breathing was a little labored laying down. To make matters worse, I have bled more days than I haven't since having it put in. Does anyone else have any problems with their Mirena?? I'm thinking it might be time to have it removed. I've emailed Dr. Day for her recommendation but thought I'd see if anyone else has experienced the same thing.
    ++++++++++++++++++++++++++++++++++++++++++++++++++ ++++++++++++++++++++++
    *Adopted but know that birth Father died at 37 of what we now believe to be HCM.
    *Diagnosed with HOCM in 11/07. I also have the abnormal papillary muscle.
    *Gradient 100-185 when provoked.
    *Currently being treated with Atenolol, 50 mg. per day.
    *Three kids: 19, 13 and 11, all presently clear of HCM.
    *Patient of Dr. Sharlene Day, U of M.
    *ICD - August, 2010

  • #2
    Re: Mirena Users out there???

    I seem to remember that after advertising for a while that there was either a recall or some kind of problem -- might have been a class action lawsuit (modern day ambulance chasers). Google it, you may find something.

    Personally, if I thought it was causing me problems I would have it removed.

    Comment


    • #3
      Re: Mirena Users out there???

      I do not have HCM, my husband does, but I do have the Mirena. I'm on my third one. I haven't had a menses in 7 years (2 of those due to being pregnant and nursing). For me, it works exactly as advertised. But I have had three friends try the Mirena and they had break-through bleeding (that is bleeding in between cycles) and discomfort. Each had theirs removed and went on BC instead or had their husbands' get the Big-V. Mirena is not for everyone it seems.

      And once you have it removed, your body should return to "normal hormone" range almost immediately. I was able to get pregnant (on purpose) within a month of removing my Mirena.

      That's just my experience though.
      Megan, wife to Husband, Justin with HOCM
      Husband diagnosed at 37 when taken to ER due to CHF on vacation in San Diego at Pomerado Hospital, March 2014
      Seeing Dr. Salcedo in UC Med Hospital Denver upon diagnosis
      AICD/Pacemaker July 2014 @ UC Med Hospital, Denver with Dr. Nguyen
      Myectomy at Cleveland Clinic October 2014 with Dr. Smedira
      Parents to 3 boys, 11, 8, and 6 all currently clear from recent echos

      Comment


      • #4
        Re: Mirena Users out there???

        I know nothing about Mirena but have been reading like crazy about HCM, especially HCOM, since I was diagnosed in July. From what I've read, swollen feet and difficulty breathing when laying down that resolves shortly after sitting up are some of the more serious symptoms of HCOM. You might want to check with your cardiologist.
        At least 5 years of symptoms.
        07/24/14: Age 45, diagnosed with HCM w/ obstruction.
        09/30/14: Tested at Cleveland Clinic (Ohio).
        January 2015: Approved for surgery.
        03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

        Comment


        • #5
          Re: Mirena Users out there???

          Agree Darlene , whether it is the hormones involved with the IUD that are leading to fluid retention or something else causing it....PND....paroxysmal nocturnal dyspnea ( intermittent difficulty breathing at night) or Orthopnea (the need to sleep with head elevated to breathe) are both signs of possible heart failure and should be reported to cardiologist.
          "Heart failure" sounds more drastic than what it often is......the heart hasn't totally "failed" it just is not able to keep up with the workload and leaves excess fluid in limbs and/or lungs. But definitely needs to be paid attention to.
          Rainey: Hope you hear back from Dr. Day soon!
          Last edited by JillC; 09-04-2014, 11:12 PM.
          After years of symptoms:
          Officially Diagnosed HOCM 2006
          Myectomy 3/11/13 at non-COE
          Extended Myectomy 7/23/14
          At Mayo with Dr. Joseph Dearani

          Comment


          • #6
            Re: Mirena Users out there???

            I have HCM and I'm on my first merina (implanted 4 yrs ago). It took a few months before my periods went away completely and I will get a very light one a couple times a year. No side effects at all. I love it! I tired to blame weight gain on it but honestly it was probably just eating more and not an increased appetite from the hormones. Just count your calories for a few weeks with an app like the live strong one and you'll lose what you gained recently It's normal to want to blame changes to your body on the last change you've made to it so it's good that you're asking.

            I was told by doctors that the merina has little hormones and that it pretty much stays in that localized area and that is why it is safe for heart patients who would otherwise had side effects from oral contraceptives.

            Good luck with it and I hope you feel better soon!

            Jen
            Diagnosed during pregnancy age 30, July 2007
            2 mutated genes found in Feb 2009
            ICD Nov 12, 2009
            2 daughters born in '07 & '09. Normal EKGs.
            No known family history of HCM
            In 1995, at age 18, an echo for a misdiagnosed mvp showed HCM but it went unnoticed.
            Still jog and feel no symptoms on most days.

            Comment

            Working...
            X