Mirena: Writings on the Wall


I have done a ton of online research about the links between Mirena, silicone and autoimmune diseases and I intend to hit the books soon. I'm amazed at some of the information that I have come across on the web. Some of that information comes directly from the FDA and Bayer (the maker of Mirena) websites. I have saved page upon page of information that only fuels the idea that my quickly deteriorated health is a result of Mirena.

Of course, there was always the obvious -- the symptoms (debilitating hip and shoulder pain) began about 4 months after I had Mirena inserted. And when I had it removed in November the bone deterioration halted. Both hips and my right shoulder were already affected, but upon removal, my left shoulder didn't deteriorate. It was starting to, as an MRI revealed. But it seemed that my blood flow had all of sudden restored itself after Mirena was removed. My left shoulder was saved.

Could that have been a coincidence? Sure. Seemed unlikely, but it could have been. Even through today, I've tried to keep an open mind about things. But as I read more, my mind starts to close in a bit.

Here is some information that I want to share (I'll share more at later a date - in an effort not to overload you or myself):

IF YOU ARE A WOMAN BETWEEN 82.5 - 121 POUNDS (and of reproductive age) ...

"Body weight and serum SHBG concentration have been shown to affect systemic LNG concentration, i.e. low body weight and/or high SHBG (Sex hormone-binding globulin) levels increase LNG concentration. In women of reproductive age with a low body weight (37 to 55 kg) the median serum concentration of LNG is about 1.5-fold higher than in those weighing above 55 kg."

(source: http://www.mirena.com/en/professional/contraception/pharmacokinetics/index.php / sourced via: Mirena Extended CCDS 2011 Bayer HealthCare Pharmaceuticals, Berlin, Germany, 22nd March 2011.)

This is a clear warning that should be provided to women who are between 82.5 - 121 pounds and are interested in using Mirena as birth control. Low body weight is shown to "affect systemic LNG concentration." Mirena is promoted as a "remote" concentration -- meaning that it only affects a SINGLE area of the body (the cervix). But this clearly says "systemic," which means the ENTIRE body. "LNG concentration" is the amount of levonorgestrel (LNG) released by Mirena. And the excerpt from above clearly states that the concentration is 1.5 times higher in women who weigh less than 121 pounds.

Why wasn't I, as a women within this "low body weight, reproductive age" range, not warned that the LNG could possibly spread throughout my ENTIRE body OR that the levels of LNG being released would be 1.5-fold HIGHER? Women who fall into this category need to be told this BEFORE Mirena is inserted. This information should be made known by Bayer, the FDA and the doctors who support it and provide it to their patients.

FYI - Levonorgestrel was also the active ingredient in Norplant and Norplant II (Norplant distribution in the US ended in 2002 and it resulted in more than 50,000 lawsuits, including 70 class actions. Norplant II has never been promoted in the US)

Mirena works as a birth control because the LNG, which is released daily into the uterine cavity, thickens the cervical mucus and inhibits sperm motility and function.

But if it the concentration is systemic instead of remote, could that mean that the uterine cavity wouldn't be the only place where thickening would occur? Perhaps the blood in my arteries and veins have thickened, causing blood clotting ... which causes Avascular Necrosis.

I've seen where many women have reported difficulty breathing. And others, including myself, experienced heart palpitations. Are we "thickening" in all the wrong places?

And perhaps there is some silicone mixed in with what is being released. Is silicone roaming all around my body causing autoimmune issues? I've previously shared that many women who use Mirena have developed autoimmune symptoms and diseases. I shared a video that I found on "My Life After Mirena" here. I have also discussed some of the links between Mirena and my own autoimmune issues here.

Here is an excerpt from a Mirena description:
"The reservoir consists of a white or almost white cylinder, made of a mixture of levonorgestrel and silicone (polydimethylsiloxane), containing a total of 52 mg levonorgestrel. The reservoir is covered by a semi-opaque silicone (polydimethylsiloxane) membrane."

I'm having a hard time understanding this. Is this reservoir a tiny medical genius? How does it know to release LNG and not silicone? It's already been shared that the daily release amount of LNG differs in body types and at different ages and for women with high SHBG levels. And it was also shared that it could become systemic and not remote. My guess is that this contraption is far from genius. In fact, it seems to be getting it all wrong for many of us.

I've virtually connected with hundreds of women who have had bad experiences with Mirena. Some will never be able to have children again (since Mirena is recommended to women who already have at least one child). Some fight off horrible autoimmune symptoms every day of their life. Some have isolated themselves, because no one seems to care what is happening to them and they aren't receiving proper care. Some, like me, will have to have surgery in an attempt to restore their bodies back to normal.

I am not a doctor. I have no interest in becoming one. I may not have credentials, but I do have a brain. Sometimes, all you have to do is read between the lines. This is where we need doctors to step in. Do some actual research and report ALL of your findings. Provide some proof. I'm a willing test participant! Step out of the box and listen to your patients. Stop listening to companies who need you to push their product. Make a difference.

If you have had a bad experience with Mirena, or any other drug, I urge you to share that information with the FDA through MedWatch, the FDA Safety Information and Adverse Event Reporting Program @ http://www.fda.gov/Safety/MedWatch/default.htm

They will never know what is happening to us if we don't report it. I have no idea what they actually do with it when they receive it, but I have shared this information with them in the hopes that they would make Mirena provide this warning (among others). I'd like to believe that they actually read the reports and that they take their jobs seriously. (sigh)

Please read, sign and share this petition for more testing on Mirena IUD/Skyla IUD:


  1. Mirena IUD nearly killed me. So glad I only had it 3 months. Thankfully and I am mostly recovered. I hope you feel better soon.

    1. Thank you, Robin! And sorry for the late reply. I don't know why I'm just seeing this. But so glad you survived Mirena and that you are mostly recovered! I hope that you are fully recovered soon!

  2. Actually, the FDA takes all reports on drug to drug interactions and adverse reported actions extremely seriously. They do this during drug trials too. EX. I a participate in the drug trial incidentally contracts the sniffles because they are coming down with a cold. One of the side effects would be listed post nasal drip (even through the cold was incidental). Any way this is how it is suppose to work and my experience w/ dealing with the FDA as a nurse and as a patient (long story short). I think where the problem comes from mainly is the info the FDA is feed (in other words the reports from the drug trials from the company).

    1. Well, that is good to know that they take those reports seriously. I expected to hear something back from them about the reports I made, but I never did. I can see that the problem could be what is reported to the FDA. I have spent a lot of time reading clinical trials involving LNG (the active ingredient in Mirena) and have picked up on some things that definitely need more detail. The trial doesn't list much, but when I search other summaries of the trial - those are more revealing. I definitely think things are hidden from the FDA (and the rest of us).

  3. I am now suffering from Adult Onset Still's Disease that started about a year and a half after having the Mirena placed. I had it removed after about three years of poor health and my flare ups have decreased in severity (thank goodness) anyone have any good links on foods or vitamins to help restore our natural hormone balance and clear out the crap left behind by the IUD?

    1. I'm so glad that your flare ups have decreased! I think that inflammation, which causes Still's, is the culprit behind everyone's problems with Mirena. Our bodies just react differently to the inflammation. A LOT of women complain of arthritis pain. Below is a link to "My Life After Mirena," where she shares her "turbo detox" plan. You can also take a detox bath: (1 cup of epsom salts, 2 cups baking soda, 1 cup apple cider vinegar for 20 minutes).


      Also - here is an online group where you can ask questions and get a lot of great feedback from other past Mirena users who have had problems:

      Best wishes for a bright and healthy future! :)

  4. I have my first Mirena inserted in 2005. 4 months later I was rushed to hospital and was diagnosed some time after with Nephrotic Syndrome. Since then I have had a heavy does of Cyclosporine and on/off steroids daily. I removed the Mirena in 2006 when I decided there was enough drugs and hormones being pumped through me. I am in remission, however, this is a life long disease and the side effects of cyclosporine are among the worst I have read about.
    It's now 2012, one month ago I had the Mirena re-inserted... Now, it looks I have developed rheumatoid arthritis. Coincidence? I think not...
    I'm having this removed ASAP. I am now, fully convinced that this has caused all of my health problems. It needs to be taken off the market until more research is carried out.

    1. I'm so sorry to hear that, but I appreciate you sharing your experience. You are absolutely right -- more research is necessary (and not happening fast enough). Years from now (after all has been researcher), I'm convinced we will learn the absolute truth about Mirena. You can find bit and pieces of information if you research long enough, but there simply aren't enough warnings provided. Your RA is not a coincidence. I just went and read about Nephrotic Syndrome and the secondary causes of that are the same effects that many women have had after Mirena ... including Sjogren's Syndrome, which I was diagnosed with after Mirena. It also list SLE (Lupus) as a secondary cause, which is what many women's bodies mimic while using Mirena. Our bodies go into a horrible autoimmune state and it affects us all differently, but the connection is clear.

      I wish you all the best, and I am SO happy to hear that you are having it removed. It will take some time, but you WILL start to feel better. One day at a time ...

    2. Denise, my name is also Denise. I've had the mirena in since January, and started having joint pain in March. I'm being worked up currently by the rheumatologist, but have not come back positive with anything. I have requested silicone poisoning tests from my doctor, and am awaiting a response. If I do have an autoimmune, it's most likely sjogren's, or possibly lupus. I have more symptoms of sjogrens. Any recommendations for other testing. I have not had the mirena removed yet because then I will need a hysterectomy. But if it's the cause of this pain it has to go.....

  5. I'm just glad that I finally may have an answer. I'm having bloods checked on Tuesday and will try be tested for silicone levels. I'm also going to write to the FDA and Bayer. My life has completely changed, I've spent months on end in hospitals. I hope you are getting better and thanks so much for sharing this with us. X



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