MY STORY


I'm a full-time writer, wife to Big Daddy and mom x 3 to Big Boy, Chip Chip and Boogies. I can do all things through Christ, french fries, the perfect song and a scenic view. I believe that life is a series of small miracles ... if you look at it with the right perspective.

In September of 2011, I could walk, run, ski, skip and do cartwheels. But all of those abilities were taken away after an unlikely diagnosis of Avascular Necrosis (also known as osteonecrosis or AVN) in my hips and shoulders.

As of today, my case is known as idiopathic, meaning doctors have not been able to figure out what caused me to develop AVN/ON. Personally, I believe that the Mirena IUD, which was inserted in May of 2011 and removed in December of 2011, created a Perfect Storm within my body.

Avascular Necrosis, or bone deterioration from a lack of blood supply, is caused by factors external to the cell or tissue, such as infection, toxins, or trauma. This is in contrast to apoptosis, which is a naturally occurring cause of cellular death.

I was treated with three core decompression surgeries: one for each hip and another for my right shoulder.

I spent several months in a wheelchair. Just one week after taking my first steps since my surgeries and starting gait training (aka: learning to walk again), my left lip collapsed and I had a hip replacement. I recovered using crutches, a walker and a cane. I am finally back on my feet, without an aide.

In addition to living with AVN/ON, my blood tests revealed that I developed Sjogren's Syndrome (Autoimmune Disease), and that I have a clotting disorder. I also developed Hypoglycemia and tested positive for ANA with elevated ESR (indicating an Autoimmune "issue").

BUT despite it all, I'm absolutely in love with my crazy/beautiful life. I am surrounded by an amazing family, and friends who are there through thick and thin. There is NEVER a dull moment, and I wouldn't have it any other way.

I enjoy sharing my adventures through recovery with my cast of characters! I hope you will stay tuned for more, and thanks for visiting!


For my all encompassing 2012: Year in Review, please visit [2012: Year In Review].

For a quick timeline of my diagnosis and treatments, please read [Then & Now].

For an explanation of why I believe Mirena IUD triggered my health issues, please read [The Perfect Storm].

Please read, sign and share this petition for more testing on Mirena IUD/Skyla IUD:
http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting/






28 comments:

  1. You are a very strong woman! Can't wait to read more about your story and journey!

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    1. Thank you, Jasmyne! I really appreciate that! :)

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    2. Hi Denise!
      I finally got a chance to read your amazing story and awesome blog! You are one hell-of-a strong woman, and I truly admire you and your warrior spirit. So glad to have shared our course together!
      Cheers!
      Tea

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  2. Wow, you are truly a strong woman for keeping such light and positivity to your situation. I pray for the best now and forever for you.

    The idea that mirena could have caused this makes me sick to my stomach. If you don't mind, I'm going to link your blog to my mirena post so more women can hear your story.

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    1. Thank you, Courtney! Of course you can link to my blog. I really appreciate the prayers and encouragement!

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  3. I give you my support from the other side of the ocean! All the best to you and your family!

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    1. Thank you, Armando! I really appreciate your well wishes!

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  4. You have a very inspiring story that deserves to be heard. Keep writing and I wish you and your family all the best. :) I'm glad I found your blog!

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    1. Thanks so much, Denise! I'm glad I found yours, too. Love the way it is set up! Very cool!

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  5. Denise,
    Thank you for sharing your story with me. It is very inspiring for me to see how positive you have been through your experience. I pray that Bayer will have to let women know what they could be getting themselves into. Like you I had no idea, and as I'm on my second mirena for almost ten years, I wish I could have found all this information out way sooner. I hope to save as many women as possible from the hell we have been through.

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    1. Thanks, Melissa! I'm glad I found your blog. Though not the greatest circumstances, it's always great to connect with others who have had to deal with some of the same struggles. Keep on writing!

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  6. I'm very sorry for your unfortunate diagnosis - health problems are the worst type of life upsets as they impact literally every facet of life. While what happened to you is devastating- I only want to point out that the Mirena IUD may not have been directly involved. Norplant (a drug you cite to be full of the same toxins as the Mirena) had the same drug which is currently in the Mirena but was administered differently. Norplant was taken off the market for a variety of reasons - mainly because of its poor design (6 silicone rod administration apparatus which had a tendency to "wander" in the body as they were placed in vascular muscle.) You are correct - the Mirena IUD and Norplant contain the same hormone levonorgesterel - a synthetic progesterone or progestin. The only thing I wanted to make you aware of is the fact that countless hormonal contraceptive methods also contain the same progestin. Seasonique, seasonale, plan B or the morning after pill, certain proveras and progesterone creams and many other progestin containing products. Levonorgestrel is one of the most widely used progestins today - its use is not isolated to the Mirena and Norplant. In fact, if you're looking for the true replacement for Norplant it is actually the "new and improved" version called nexplanon that is essentially the same thing redesigned to be a single rod that is less easily misplaced in the body. The side effects MOST women complained of with Norplant are the same or similar to those experienced with any hormonal OCP - menorrhagia, metrorrhagia, dysmenorrhea, headaches, nausea, depression etc. The rare instances of true averse reactions were minimal, as they are with currently with the Mirena. The statistics showing damaging results are still in the double digits. Our local office alone implants over 100 Mirenas a month and our clinic is not that large. The number of women using the Mirena is astronomical and the percent of women with serious health effects are still small. These instances, while rare, are not absolvable as infrequent "glitches" in the system and should be addressed. I too predict the fall of Mirena from the market, but not because it's necessarily a bad product but because of its price, popularity and subsequent exposure to media scrutiny. Yaz, for example, was highly prescribed and thus the incidence of mishaps increased. Lawsuits ensued and the product, while still available, has all but disappeared from the Oral Contraceptive Pool.
    I'm in no way trying to devalue or cheapen your experience. It is entirely possible that your current condition is due to the use of the Mirena IUD. I just wanted to make sure you were providing the correct information to your readers. I've worked in a Gynecology office for the last 7 years, I have a biology degree, I'm currently attending PA school, my father is a Gynecologist and I have researched this topic extensively before making my own personal choice in contraception.
    Your story is heart breaking - I'm very sorry you've been dealt this trial in life. I believe that people are only tested as much as they can take by our loving father in heaven - which I'm assuming is a belief you share as I've found many allusions to this throughout your blog. Good luck in your journey - I wish you the best of recoveries.

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    1. Hi, Whit. Thanks for visiting and commenting. I do appreciate your feedback. I love hearing all opinions, and greatly value one from your profession.

      While I understand that LNG is the active ingredient in both Norplant and Mirena, the 'toxin' I speak of is the silicone that the tubes are made from (with Norplant, the capsule were made of silicone). I know that 'silicone poisoning' is a controversial topic and not widely accepted among many doctors. I've read research about the link between silicone in breast implants and autoimmunity. And by connecting with women online, I know that some have removed Mirena themselves, or seen the IUD after it was removed -- pieces of the silicone were missing from the device. I wouldn't believe this stuff myself if I hadn't seen photos of it or gone from a near-perfect health profile to having high ANA and ESR levels, indicating an autoimmune issue.

      The LNG, in my case, definitely didn't help. Tests revealed that I also developed a clotting disorder. Clotting is an obvious cause of Avascular Necrosis (if the blood can't get to the bone it deteriorates and dies), and steroid use is also a well-known cause of Avascular Necrosis (AVN). The LNG is a progestational steroid. A clinical trial has also shown that LNG causes a decrease in bone mass density, which could have been a factor for me.

      In all honesty, I've tried really hard to keep an open mind about things. I started to wonder about the Mirena connection initially because once I had it removed, the AVN didn't spread to my left shoulder. That was odd, because AVN almost always shows in parallel. I got it in my left hip, then my right. I got it in my right shoulder, had the Mirena removed, and then it stopped. It never spread to my left shoulder. Could that be a coincidence? Possibly. But I don't believe it was -- especially with the addition of the new autoimmune issues arising.

      I know that a ton of birth control options use synthetic hormones, and that for most, there are no harmful effects. While I don't believe that they are necessarily 'good' for our bodies, I don't think that is the sole purpose of my conditions.

      When I mentioned Mirena in this post, I included a link to another post that I wrote called, "The Perfect Storm," which explains why I think Mirena was the cause of my quickly declined health. The pain started just five months after having it inserted. The timeline on its own is very telling.

      I did not study to be a medical professional and would never claim to be one. I only write in a science field. I recently signed up to take a course on contraception (that starts in January) through the University of California - San Francisco, just to learn more and to be better informed about different types of contraception and how they function, what ingredients they use, etc.

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    2. I cannot, in any good conscience, suggest Mirena IUD as an option to any woman. I know that many woman rave about it, and God bless those who do not realize any harmful effects from it. I've connected with hundreds of women online whose lives have been altered because of their autoimmune issues ... some who have become infertile ... and others who have to have it surgically removed after it perforated their uterus.

      But in my opinion, patients are not being fully informed about the effects of Mirena. I was never told that because I have a low body weight, that there was chance of LNG becoming systemic (not remote, as it is promoted) and that the daily release amount would increase 1.5-fold. I was never told that Mirena was an abortifacient -- the thought that I could have possibly aborted a baby without any knowledge of that makes me sick to stomach. I was not asked if my family medical history included clotting or autoimmune disease, and I strongly believe that this should be Step #1 for ALL doctors who give Mirena IUD to their patients.

      I should have researched more on my own, but I trusted that my doctor would tell me everything that I needed to know. That was silly of me. The Mirena sounded like the perfect option -- birth control for five whole years with little to no side effects and I probably wouldn't have to have a period. That sounded magical!!

      The thing is, I'm not so sure that my doctor was completely informed about the product. With the amount of perforated uterus cases alone, it's obvious that this product was not tested enough. But their needs to be more studies about the links between Mirena and autoimmunity and clotting. I don't understand why the medical field is so shut off to the idea that Mirena causes autoimmune issues, and would love to hear your feedback on that.

      Labs and doctors made it impossible for me to get tested for silicone levels, saying that there was no such test. Every time I wanted help and just wanted answers about if there really was silicone in my body, I just hit a brick wall and people treated me like I was from another planet. I didn't understand why I couldn't just be tested for silicone toxicity, and if I wrong ... well, I would have shut up about it. But no luck. And after many months had passed, I gave up hope of being tested because by that time, it was likely that the silicone had already left my body.

      I sincerely appreciate your well wishes, and do not take offense to anything you said. I believe you are only trying to present ideas, and I respect that. I, too, hope that I am providing correct information to my readers. I believe with all my heart, that it is correct. And since doctors cannot give me any answers -- except to say that something "triggered" these issues -- I have to find my own.

      I have no doubt that Mirena was that "trigger."

      For some, it triggers nothing. And for others, it triggers countless autoimmune issues. It seems that all who have had negative effects from Mirena have tested with a positive ANA. There's no way that is a coincidence.

      I'm much better now, and I believe the worst of it is behind me. Without our loving father in Heaven, I would have been able to remain strong through it all. I look back on the experience and I am grateful for it all. Perspective is powerful.

      If you haven't seen it yet, I made a video that sums my experience up pretty well. There is a lot of research missing from it, in an effort to keep it short, but the key parts are there. Here is the link if you are interested: http://youtu.be/qKMrIM1Ku8c

      Whoa … I didn’t mean to write that much. Sorry!

      I will keep all of the things you said in mind as I take the contraception course in January. God bless!

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  7. Just read your story, so inspiring. I wish you luck on your journey :)

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  8. Hi Denise. I love your positive attitude! I am saddened to hear of your health issues. I read of your AVN with great interest because I too have AVN in both hips and both shoulders. Some of my doctors believe that the AVN is due to steroid use during chemotherapy and other treatments for brain cancer, but other doctors are not too certain. I have never taken Mirena, so I know that our issues are very different. I do know what it is like to "learn to walk again". I have now done it a few times - after both hip replacements and after coming out of a medically induced coma while fighting a bacterial infection. Earlier this year, I had a total shoulder replacement on my right shoulder and still need to have surgery on my left shoulder. I have to say, the shoulder recovery was much harder than the hip recovery. Trying to get any range of motion and/or strength in the operated shoulder has not been easy, especially since the other shoulder is growing weaker and more painful each day. I am very fortunate and have had much support during all of my health ordeals. I will send some positive thoughts and prayers your way! Thank you for sharing your inspiring story.

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    1. Hi Debbie! I can't tell you how wonderful it is to hear from someone else with AVN - though our circumstances are unfortunate, finding others who have AVN are like finding a needle in the haystack. My doctor also mentioned steroids and chemo to me as possible causes, but I never went through chemo and the only steroids I was exposed to were the hormonal steroids in Mirena. Unfortunately, there is not a lot known about AVN it seems. I have heard that shoulder replacements are much tougher to recover from. I had core decompression on my shoulder and it helped immensely. Luckily, my shoulder was caught in the very early stages. I'm almost positive that I'll have to have my right hip replaced in the new year. My doctor said to let him know when I am ready, but I'm going to give it some more time. You have been through so much, and I'm inspired by your strength! I'm glad that you have a great support system. That was what got me through, and I'm sure the same goes for you. I will pray for continued healing for you, and wish you all the best! Thank you so much for commenting and sharing a piece of your story. I really appreciate you taking the time to do that. I'll be following your blog for continued updates.

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  9. I had norplant put in my arm in the 90s. I was diagnosed with avn in October of 2012. I recently had a core decompression in my left hip. I am still recovering and also am wheel chair dependent. I am getting ready to have mu right hip replaced because it has collapsed. The drs. Do not know what caused the avn. I have been suffering with extreme pain for the last 3 years and have been misdiagnosed until now. I too have an autoimmune disease. I am praying that life will return to normal and painfree once I am done recovering from the surgeries. I have not been able to walk normally since 2010. I also had to have a hysterectomy in 2011. I have never been able to have children. I wonder if the Norplant had anything to do with my medical issues.

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    1. Thank you so much for stopping in and leaving a comment. It is very rare that I hear from others who are living with AVN. Like Mirena, the active ingredient in Norplant is LNG, a synthetic hormone. It is known to cause or increase chances of clotting, a known cause of AVN. Have you been tested for clotting disorders? It's possible that you may have developed one after using Norplant.

      Also, the rods used in Norplant were made of Silicone ... same as Mirena. Past research on silicone in breast implants (same silicone in Norplant and Mirena) shows a strong connection between exposure to silicone and autoimmune disease. The interesting thing there is that many women have reported that their bodies mimic Lupus after being exposed to silicone -- Lupus is also a known cause of AVN.

      Unfortunately, doctors still have a lot to learn about AVN and we are forced to find our own answers. Do you have a family medical history that includes any autoimmune or clotting issues? I think that Norplant and Mirena can serve as triggers that set these things off in our bodies. These issues might have never arose without being exposed to hormones or silicone.

      I'm so sorry to hear that you had to have a hysterectomy. I can't say for sure, but I would be willing to bet that Norplant has something (if not everything) to do with your issues.

      On the bright side - after my hip replacement - my quality of life improved greatly. When my left hip collapsed, I was an inch shorter on one side. Just getting from one place to the next was a nightmare. I know how difficult what you are going through right now can be. I'm certain better days are ahead for you. I also still have a pending hip replacement for the right side -- the core decompression helped, but didn't solve the issue.

      If you ever need someone to talk to, please feel free to contact me at learning2walkagainblog@yahoo.com

      I wish you nothing, but the best and please don't hesitate to contact me. It makes a world of difference when someone else understands what you are going through.

      God bless!

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  10. Denise, your story is heart breaking. I have no doubts that Mirena was your trigger. While my symptoms are certainly irritating and are interfering with my ability to lead my life as I was three months ago, my story pales in comparison. We will fight to get this poison off the market. Thank you for sharing your story, and thank you for your beautiful attitude.

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    1. Thank you, Rebecca! All of our stories are equally important. I appreciate your kind words!

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  11. Hi Denise! This past year has been a whirlwind of health issues for me, but at the heart of it all is my AVN in my left knee. It's been debilitating, but a huge learning opportunity. I started a blog as well to chronicle my journey. I was diagnosed with psoriatic arthritis and am now doing tons of tests (just drew 25 vials of blood today) to find out if there is a blood disorder that may have caused the AVN. I'm very interested in your story and can't wait to read through your posts. I'm trying to rule out possible causes of my AVN, but I believe it may have been caused by a surgery I had last year. I'm sure I'll figure it out once I read your posts, but I can't help but wonder if you pursued anything about the Mirena cause (legally). Nice to 'meet' you and look forward to getting to know more about you and possibly exchanging battle stories! ~Juls

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  12. I admire your bright personality and glorious perspective on your life Denise. I, myself, went through the trenches with the Mirena in 2013, with only having it placed for 16 months, and is still on-going a work-up. I am convinced that it has caused me my problems as well, because I was a perfectly healthy 28 year old. It is challenging, but I continously consult my Lord and Savior Jesus Christ to keep me strong. I would like to endure this journey with you to ensure that others do not have to experience what you and I, as well as many other have gone through. True inspiration, you are! ~ Ashley S. Greenville, SC

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  13. I have had my Mirena for 5 years. I have had 5 autoimmune diseases, I repeat 5 autoimmune diseases diagnosed during the last 5 years. I have gone through some horrible times in those years, to include tremors, slurred so each, weakness and difficulty with motor control (to name a few). I have a beautiful 5 year old daughter, whom is the inspiration and joy of my life---- I cry every time I think about not being able to hold her when she was 8 months old, due to weakness and tremors. This happened only 6 months after having the iud inserted, but I never attributed anything to the Mirena. I never though it could be the Mirena until my gynecologist asked if any of my doctors thought it might be related because there is new evidence suggesting women with familial histories of autoimmune disorders experience a multitude of side effects and newly diagnosed autoimmune diseases. I am about to have .one removed next week, and I'm terrified of the "Mirena Crash." Can you offer any guidance on your experience when it was removed?
    I also wanted to thank you for your courage and for sharing your story. You don't know how you are appreciated. May God continue to bless you and look over you.

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  14. I was diagnosed with AVN six years ago in ten joints. I had sixteen core decompressions amongst those ten joints, multiple in several. Four joints lasted over a year but ultimately collapsed and were replaced. Additionally AVN was in my right tibia so a metal rod was placed down the tibia shaft and attached to the new knee. AVN developed as a result of being treated with high dosage a Prednisone and chemotherapy for life threatening autoimmune disease. While I have lived with pain everyday for the past eight I have really adjusted and have found that moving rather than sitting, talking rather than staying silent has helped distract me from that pain. So every day I walk instead running, I now swim instead of skiing and I ride a stationery bike instead of playing tennis. Staying in constant motion prevents you from feeling the severe pain. It's important that you see the light at the end of the Tunnell and walk towards the light. Live each day, move away from pain medication and try alternative options like bio feedback, acupuncture, swimming in warm water pools. Don't push yourself or expect that everyday is going to be a good day it will not. Eat well and rest often good luck to everyone.

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    1. Wow. You've been through so much. And your words are so wise. Thank you so much for visiting and commenting. I needed to read this today.

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  15. Hello Denise,
    I have AVN in both hips, bad arthritis & no cartilage left. I slipped on ice & have never been able to walk right since that fall & have been living with pain since Feb 2011. My left hip is partially dislocated. I had two female surgeries in 2002, but have never used an iud. They don't know why I have it, or why my hips are so bad, but I was fine before that fall. Both surgeries were goofed up, so I won't be running in for dual hip replacements until I can't move at all. Thank you for this blog.

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