Hips Don't Lie

06.25.12

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:

http://www.medications.com/mirena/37550

http://curezone.com/forums/am.asp?i=1486855
http://curezone.com/forums/am.asp?i=1590132

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:
http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting/

11 comments:

  1. Hi Denise! Thank you for sharing your story. It's great to know that there is someone out there ready to support and inspire others in the same situation.Let us just look at the positive side always.

    -Carena G.
    Stryker Hip Recall Blog

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  2. I had mirena inserted on 5/28/13 ever since then i have had two urinary tract infections and none stop bleeding for the first 6 weeks. Today i started my period and also began have sharp pains in my right hip now i cant even lift my leg without being in excrusiating pain. I go for my string check in two days and am seriously thinking about having it removed. Im begining to think its not worth the trouble so many side effects are possible. Ever since ive had it put in ive also been having migraines and extreme fatigue along with brain fog i feel like i cant concentrate. I have no clue if these are related to mirena. Or the fact the i am a mother of two boys one five year old and a very active 9 month old. I went through alot having it put in, the first one she put in got ripped out when she was cutting the string so she had to insert another one it was not fun. I love not having to do anything and being protected for a long period of time but idk if its worth the hassel....please help......

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  3. I had mirena inserted on 5/28/13 since having it inserted i feel like i havent stopped bleeding i bled none stop for the first 6 weeks. I have also had two UTI since getting it i am also experiencing fatigue migraines and brain fog. I dont know if they are conected to mirena or the fact that i am a mother to two boys a five year old and a very active 9 month old. Today i started my period and also started experiencing sharp pain in my right hip now i cant even lift my right leg without being in severe pain someone please help i go for my string check in two days and am highly considering having it removed. I went through alot having it inserted the first one she put in got ripped out when she was cutting the string so i had to go through the process again. I like the though of long term birth control but im not liking all the headache of the possible side effects. Has anyone else experienced this.

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    1. I definitely experienced brain fog with Mirena and I don't have kids. It got worse, although I still have some. It's now better. I got migraines anyway. The pain you experienced, yes. I hope you got it removed; I finally did but I still got the hip pain. It was nice to not take a pill but that's about all I can say for it!

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  4. i have had the merina removed after 5 yrs of hell with a billion symptoms mentioned from other sites.. i went through sharp uterus pains and cramping(no periods while on merina other then light spotting AFTER the 6 month mark)..hair loss. extremely tired all the time. about 50 LBs weight gain over the 5 yrs but the last 2 months it was in seemed like when the most came on with extreme bloating i thought i was 7 months pregnant,hair loss, sleepless nights,mood swings,zero libido, night sweats, headaches and list goes on.. i blamed most of it on what i thought was perimenapause.

    I am 44 now and 5 ft 7 and 294 lbs as of my last appointment may 30 2105 when i had it removed... Crazy.. I complained to my doc a bout the weight gain and cramping and bloating and also the pain i am suffering with in my hips and knees ..he sent me for ex rays and they came back that i have arthritis in the left knee but he said the right seems to be ok... so this is now day 5 after having iud removed.. i am in a full blown period with clots my knees have swelled(both) with water and im barley able to walk..now remember ex rays showed only problem with the left knee. my hips are constantly throbbing and sleep near impossible without taking pills..

    when i had the iud put in 5 years ago 2010 i was in a picture of health.. i had a job i loved that kept me healthy and fit which i also started just before i had the iud implant put in..as the months progressed the pain started hips,lower back, feet, knees... i ended up going in and having an mri done for the back pain .. it came back with osteoarthritis is L4.. this 1 yr after insertion... pain continues and gets worse to the point after 4 yrs i have to leave my job and take a desk job due to pain.. i have now been diagnosed with plantar fascitis/ arthritis nodules on the tendon that runs through arch of your foot on both feet.. this was on may 24/2015 now i am diagnosed with osteoarthritis in left knee as of may 30 2015.. so from the lower back down i have osteoarthritis and darn sure its in both hips as well..

    now being at where the merina is and has its placement im very suspicious as to the merina being the cause for these problems.. i have read some that they are starting to look into this as being linked to the merina.. But in the mean time im sick and tired of doctors trying to convince me that there is nothing wrong with me and that its not possible that any of what i went through the last 5 years and that i am going through now is not linked to the merina iud..they look at me and say i need to lose weight.. duh i know that but till these chemicals have left my body its going to be a fight to lose which i willing to do in order to get some frame of health back..before i had the iud put in i had lost 65 lbs and i put every lb back on pretty much and have tried everything to lose it and take it off now with the pains in lower body from arthritis it going to be a real battle.. also to mention arthritis is not genetic trait on either side of my family.. i checked into it.. Please do not put this beast into your bodies look for other methods it will wreck you in the long run.. i am 44 and my body feels like its 80..

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  5. I had my first Mirena inserted in 2011 and started having hip pain a few months later. I went to my doctor several types. She gave me meds, shots, patches, etc. No relief. I did PT and saw a chiropractor and no relief. I finally concluded the only thing to change was the IUD and removed it myself. It took a few months and it got better. Fast forward 2015 and my Dr. wanted me to try the Mirena again to keep cysts under control. So I did. It took 5 months for my periods to stop and guess what started up again? Hip pain!!!! This is crazy!

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  6. I can't believe what I'm reading. I have had mirena IUD twice, for a total of 8 years. I had right hip pain from the start, mood swings, low libido, stomach pain and bloating, weight loss, joint pain, infections. Now I find out I have osteoarthritis in both hips, lower back and I didn't know mirena could cause osteoarthritis till today. Years of deteriorating health and dr never tell you it causes so many problems. Im seeing a physiotherapist now, my left shoulder also has calcification and feet and wrists crack on walking or movement. Is there any way of getting justice? I was also healthy before using this device.

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  7. This is nuts! I think this is what I'm currently experiencing. Had the Mirena inserted about 6 months ago and it's been nothing but hell. First bloating and horrible cramping. Now hip, knee and shoulder pain. I have an appointment to get it out at the end of the month and the appointment can't come soon enough.

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  8. Hi, so my name is Cassie. I am 27. I got mirena inserted when I was 22. I have never put two and two together, until now. I was diagnosed with Aseptic Necrosis of the hips, about 2 years ago. Before mirena, I was a semi- professional athlete, I danced, ran, did photography, and was a very dedicated mom to two beautiful girls and a happy girlfriend who would do anything for the love of her life. That all changed one night, after moving into our new home. I was sleeping on my Right side and rolled over to my left side only to woken up with the most horrible pain in my right hip down. I felt as if someone was pulling my leg so hard and it was out of place. I could barely breathe, and did everything I could to wake up my boyfriend. I told him something was wrong. We went to ER where they proceeded to tell me I had pulled a muscle and had inflammation in my hip. Gave me medicine and i was on my way. It happened again 3 times after and the last time the pain stayed. I couldn't get out of bed. I fought and fought the tell the doctors something was wrong. How can someone as healthy as me, just get so sick and fragile so quickly? ? Luckily a specialist saw the x-ray & quickly suggested I get an MRI. that confirmed it. I went to multiple orthopedic specialist and no one would do the surgery. The only solution to rid this issue is to have total hip replacement surgery. I had finally found a surgeon who would do the surgery. I had my first surgery in June 2016, & will be having my other side done,September 2016. The impact this has made on my life had changed me forever. I went from this perfectly happy young lady, to a mean, lazy bitch. It had taken away my life, my independence, everything. All the simple tasks of everyday life are too much, and they seem much harder. But thanks to this surgeon, my life is becoming better. Not to mention the pain medication it takes to control this type of pain and the affects it leaves on your body. I will be a voice to the people I know, and will tell them to stay away from this product! ! Cassie King
    cassieking10@gmail.com

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  9. so those of you who have had it out has the pain in hip / legs gone ?? got mine out today hoping to god the pain will go.

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  10. Everything shared here I have experienced in some form or another. I am 42. I had my Mirena inserted 2 years ago.

    I have been dealing with bursitis in my right shoulder for 1.5 years now. I hurt my shoulder by paddle boarding where I subluxed my shoulder and after that day nothing was the same. Therapy, chiro, Cortisol... .nothing has helped it. Now its my hips (more my left than right). I have seen physiotherapists, sport therapists, my doctor and am now heading to a Sports Doctor this afternoon to explore what is up with my shoulder and why my hips are in pain and don't move side to side anymore. And why every time I get up from a sitting position my hips radiate pain. I have no range of motion in my hips if I or my MT tries to pull/fold my leg over the other. My hips just lock. And my feet and ankles are tight too.

    This all became a concern yesterday when I had a phone interview with an Ostepoath. She was asking about my periods and I explained I have Mirena. Her reaction was odd so I got online today and found this site. I am shocked, irritated, surprised... you name it. I am getting this thing removed asap. Lets see what happens. Wishing everyone else a positive recovery

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