Hips Don't Lie


My posts are usually driven by things that happen throughout my week -- my feelings, a particular experience or event, a discussion, my progress and recovery. But this post became clear to me soon after I published last week’s post, "Now & Then."

A handful of women who I know have been experiencing hip pain since having Mirena (IUD) inserted.

Google is my (and your) friend. If you started experiencing hip pain after Mirena, I am strongly confident that, yes, Mirena caused, or is causing it. It’s important for you to know that you are not alone!

Here are just a few threads where women have discussed hip, leg and back (or joint) pain after using Mirena:



If you still aren't convinced, then google "Mirena and joint (or hip) pain." Do you really think that all of these women (and possibly you) are experiencing hip pain by coincidence?

When it comes to my personal experience -- it did all begin with hip pain. At the start, my doctor thought I had a tear in my hip from childbirth, but when my x-rays came back “clear,” she then thought it was bursitis, or inflammation. Like many women in the threads above, I received a cortisone shot for inflammation.

But it didn't help.

I had several MRI's, which revealed Avascular Necrosis (or bone deterioration caused by a lack of blood supply). Avascular Necrosis is caused by something external to the body (such as an infection or toxin). So, something caused my body to go awry and essentially attack itself.

For me being 33 (32 when it began), my doctors never would have diagnosed me with AVN from the get go -- it mostly affects people in their 60s, and it is typically caused by Lupus, chemotherapy, long-term steroid use or deep sea diving. For the record, I’ve never had or done any of those (though deep sea diving sounds like fun!)

Lupus is an Autoimmune Disease. And if you google “Mirena and Autoimmunity” than you will discover that the silicone in Mirena is the same as the silicone used in breast implants. Studies have shown that when silicone is leaked into the body, it sends the body into an autoimmune state.

If you are experiencing hip pain (or any joint pain), that doesn't mean that you are developing Avascular Necrosis. While I can tell you that I’m positive that Mirena is what’s causing your pain, I can’t tell you why your pain exists.

By connecting with hundreds of women (online), I can tell you that some women develop Rheumatoid Arthritis (another Autoimmune Disease) or Osteoarthritis after using Mirena. Others say that the joint pain disappears almost immediately after having Mirena removed. It’s possible that in your case, the pain really is inflammation (bursitis) and a cortisone shot could do the trick. It’s also possible that the joint pain you are experiencing is related to the hormones used in Mirena. Joint pain is a common side effect of a hormonal imbalance. I have also read a paper that discusses "Silicone Arthritis."

If you have Mirena removed and the pain persists, if you have a cortisone shot and the pain returns, if you have a “clear” x-ray but you are convinced that something is wrong, my advice would be to insist on an MRI. They are expensive (even with insurance). But if you want to rule out Avascular Necrosis or Arthritis, you will need an MRI.

If you want to rule out autoimmune diseases or inflammation, you will need blood tests (and you may need to be referred to a rheumatologist to get them). I would suggest being tested for ANA (to indicate an autoimmune issue) and ESR or CRP, C-Reactive Protein (an inflammatory marker).

My blood tests in February (almost 3 months post-removal) revealed that I was ANA (Antinuclear Antibody) positive and have elevated ESR (erythrocyte sedimentation rate) levels. I also tested with high levels for Sjogren's Syndrome, which is an Autoimmune Disease that women have been known to test positive for after silicone is released into the body.

After giving my body some more time to “detox,” I plan to be re-tested. I have read that it takes about 24 months for all of the toxins from Mirena to naturally leave your body. You can speed up the process by doing a detox program (supplements) and by eating natural foods (I drink fruit smoothies with a dash of spinach ... you can’t taste the spinach, promise!)

I can’t say for sure why my Mirena experience resulted in Avascular Necrosis. I know I am not the only one who developed AVN after using it, though there doesn’t seem to be an overwhelming amount of us. It could have been a genetic predisposition for autoimmune diseases that I was unaware of. Or it might have been because I was so tiny to begin with (“100 pounds soaking wet,” as most say).

I’ve already discovered from one study that women who are between 82.5-124 pounds receive 1.5-fold more of the intended daily release of Levonorgestrel (LNG, the active ingredient) from Mirena, and that, if you are within this weight range OR of reproductive age, it may systemically affect the body, meaning the entire body (which is not supposed to do).

But regardless of a possible genetic predisposition or my low body weight, I believe with all of my heart (and brain) that I would not have developed Avasular Necrosis without Mirena triggering my body into an autoimmune state ... especially since the deterioration in my left shoulder stopped once I had it removed.

It was as if I blinked my eyes, and all of sudden, I couldn’t walk or use my right arm anymore. Sometimes, all I want to do is hit the rewind button. Since that is not an option, I have to focus forward.

At least if I have to experience this, I am still able to possibly help others. That has really been my saving grace since I feel so physically helpless. I desperately hope that if you are using (or did use) Mirena and you are experiencing hip pain, that it is just a hormonal reaction, and that it will go away WHEN (not “if,” I hope) you have Mirena removed.

If anyone would like to contact me, please do so at learning2walkagainblog@yahoo.com.

When I started this blog it was, and still is, a way to reflect on my own experience. But it has certainly become more than that, because every time I am contacted by someone who was affected negatively by Mirena, I realize that hundreds of us are left to find our own answers and support. And I feel truly blessed to provide that type of outlet to anyone.

On a positive note, my husband and I had our first slow dance together in 9 months at a wedding this past weekend. He was pretty much holding me up, but it was still a great moment. I hope I never take those moments for granted again.

“Teach me good judgement and knowledge, for I believe in your commandments.”
-- Psalm 119:66

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

Then & Now


"Then" is March of 2011. "Now" is June of 2012.

My Health Profile "Then":
My Health Profile "Now":
What in world happened between "Then" & "Now" to cause such a radical change in my health profile, you ask (you are asking, right?)? I'll tell ya.
  • March 2011: My 3rd child was born (no complications)
  • May 2011: I had Mirena IUD inserted
  • August 2011: I started experiencing hip pain in my left hip
  • September 2011: Saw doctor and was treated with a cortisone shot for bursitis (inflammation of my hip, thought to be from childbirth)
  • October 2011: pain worsened, spread to my right hip, difficulty walking
  • October 2011: Was diagnosed with Avascular Necrosis in both hips (after MRIs)
  • November 2011: Pain spread to my right shoulder, I could not lift or use it
  • December 2011: Had Mirena removed
  • January 2012: Was diagnosed with Avascular Necrosis in my right shoulder, my left shoulder was beginning to deteriorate, but the damage never continued
  • February 2012: Had core decompression surgery on my left hip and right shoulder, in a wheelchair for 6 weeks
  • March 2012: Had core decompression surgery on my right hip, in a wheelchair and on crutches for 6 weeks
  • March 2012: Met with a rheumatologist, had dozens of blood tests done -- results revealed "some type" of autoimmune issue
  • April 2012: I began gait training (learning to walk again)
  • April 2012: My left hip collapsed
  • May 2012: Full hip replacement on left side
  • June 2012: Walking with a cane as I continue to recover
Honestly, it wasn't until November that a light bulb went off in my head that this could be because of my birth control and when I mentioned the possibility to my orthopedic doctor, he told me to have it removed right away, and I did. For my body to deteriorate so quickly, I just knew that something had to "trigger" these issues. Once I received the blood tests results that indicated "ANA positive," meaning there is an autoimmune issue, I immediately started researching and finding answers. I often wonder how much of my body I could have saved had I had my birth control removed earlier. Physically, the most difficult things for me are picking items up from the ground or floor, stretching, lifting and carrying my children, and walking. Mentally, the most difficult things are dealing with my knowledge and anger about the obvious links between Mirena and autoimmunity (learn more here, here or here), not being able to do things for my family, and feeling sad about where I was "Then" in comparison to where I am "Now."
Hard to believe this little thing could do all of that damage, huh?
"So teach us to number our days that we may get a heart of wisdom." -- Psalm 90:12
Please read, sign and share this petition for more testing on Mirena IUD/Skyla IUD: http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting/

Life, Interrupted


This past weekend, a tornado touched down in our city. It tore through a couple of neighborhoods, including one where my in-laws, other relatives and family friends live. Trees were uprooted and placed atop houses. Sheds and other items relocated a few houses down. Roofs were tore open. People had to vacate their homes. The financial and emotional damage is hard to comprehend. But everyone survived without injury, which was amazing considering their neighborhood looked like a war zone.

I bring this up because "things" were damaged. But "people" were not. And that was plenty cause to be thankful.

Sometimes I wish it didn't take a destructing funnel ripping through our lives to make us realize how important people are. Sometimes I wish we could pause that very feeling of gratitude and love and replay it in any instance.

Sometimes, I wish that just having each other was enough.

At times, it feels like a tornado has ripped through my own life.

It's been a tough year. And it's been a tough week and a half since my hip replacement. The pain is bearable, but it's all the "other stuff" that has gotten the best of me. I've had some horrible side effects to my pain pills, supplements and blood thinners.

I feel better this week. My main issue now is that my energy level is low. I get tired easily, which I am sure is a result of my blood levels getting so low after surgery. And I've found myself digging deep again just to stay positive.

It's been difficult starting over again. Since February 1, I've pretty much had a surgery about every six weeks. For each surgery, the initial recovery time has been six weeks. So as soon as I've started to feel better and get back on track, I've had to start all over again. It's been an unfriendly cycle of re-building back to who I was just less than a year ago.

I still have more than four weeks of recovery (possibly six, depending on how my cracked bone heals). I can't walk without a walker or lift my children during that time. I have to limit my time on my feet. Again, I'm only a small percentage of myself and I am doing my best with what little bit I can do.

In the past few months, I haven't always been a perfect patient. I started walking before I should have. I did things around the house when I shouldn't have. I didn't give myself enough time to heal, because there was so much to do. But this time, I intend to give myself time to heal. Where I go, my walker will go with me -- no matter how embarrassing or inconvenient it is.

Another surgery could be my breaking point. And I worry it could break those who surround me, too. We are all exhausted. We are all a little tired of re-building.

Many times, my saving graces have been my children. Sometimes my daughter hugs me for no reason at all and tells she loves me in the most sincere way. My youngest son presses his face against mine and gives me the cutest half-smile as he cuts his eyes away. He is seriously going to melt some hearts. My oldest son has always been extremely loving. I have to admit, as he gets older, sometimes I jump to ask, "What do you want?" without even realizing that he is just as proud of me as I am of him. I can see it in his eyes and feel it when he hugs me or grabs for my hand in public.

But life is so full of distractions. And with everything I'm going through, I'm certainly not the happiest version of me. Still, their love never fails.

It's amazing how quickly my own mind can decline from "Praise God! I'm alive!" to "Oh, Whoa is me."

Just like the tornado-effect eventually wears off, so does the surgery effect. In the hospital, we are all just so happy that everything went OK. That I was OK. But with each passing day, life sneaks back in with frustrations hiding around every corner. We quickly lose sight of how thankful we are to just be alive and to be with each other.

Anyone who has ever lost someone they love knows that there is no sort of replacement. Every person means something different, fulfills a different place in our heart. When someone is gone, that place never refills. Eventually, we just to learn cope with their absence as best as we can.

Re-building is necessary along the way. And it can certainly be frustrating and sometimes, downright painful. The word "unfair" often fits the bill. But as long as we are able to re-build, we should.

Early on in my diagnosis, before my first surgery, a friend sent me this quote: "Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try it again tomorrow.' "

I will try it again tomorrow and each day after ... because I still can.

I'm not exactly sure where we mentally decide to take a sharp left turn from what really matters into the negativity that pollutes our mind. It's somewhere between that moment in the aftermath of something that brings a true perspective and the hustle of everyday life. It's a glass half empty of nothing but a struggle with ourselves -- a struggle that wouldn't even exist if we didn't allow it to.

"Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things."
-- Philippians 4:8


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