Tuesday, October 16, 2012

Mirena IUD & Rheumatoid Arthritis (RA) and Silicone Toxicity


In April 2012, my OB/GYN said it was time to start thinking about another form of birth control -- one without estrogen.  I was on YAZ for almost 12 years, and she proposed Mirena IUD.  She just had her third child and had the Mirena IUD inserted, several woman in her office had it, and she couldn't say enough about it.  She said the IUD was making a come back.  I read the materials, I asked her questions about the side effects, particularly around whether or not I was a good candidate -- i have heart arrhythmia caused by electrical signal problem and am on Beta - Blockers.  She said, No.  I also checked with my cardiologists, showed him the materials, and he said, okay to get Mirena.

On April 15, 2012, I had the IUD inserted and I stopped my birth control pill.  My body IMMEDIATELY went crazy, and that's an understatement. The fatigue, the pain, the chills, the mood swings (I was severely depressed and could barely wake up and think on a daily basis).  It felt like my body was attacking itself. It got progressively worse.  

A couple weeks after getting IUD, I went on a 7 mile hike, and it almost killed me. That week, I was almost crippled and in pain.  Every joint in my body was in pain.  The breaking point was about 6 days after the hike the joints in several of my fingers were black and swollen, and had pain in my feet, knees, hips, wrists, and hands.  I was scared.  I also couldn't close my fists and bend my fingers.  It was also very painful.  My boyfriend made me go to the emergency room.  In the ER i was diagnosed with severe inflammatory joint disorder (every joint in my body was swollen and hurt to the touch).    The ER doctors suspected RA (Rheumatoid Arthritis).  They took all of the blood work they can take, including Lyme Disease, Hepatatis C, etc.

Of course, I told them about all of the changes my body had experience when I stopped YAZ and had the Mirena IUD inserted and asked if there was any relationship.  They didn't think so, but they didn't know.  They said my tests would help us rule things out and to follow up with a Rheumatologist.  

At this point in time, let me provide the back story regarding my health: 2 years ago, my General Practitioner took my ANA and it was "borderline."  About 4 years ago, a rheumatologist in Chicago (where I'm from, I moved to NYC in 2009 and currently live in NYC), also took ANA and it was also borderline.   I also have suffered from severe feet pain for the last 3 years, hip pain, back pain.  I also have had a lot of eye "issues" and started taking Restatis for dry eyes about 3 years ago.  I asked my eye doctor if my eye issues could be related to an auto immune issue, he said no.  This was ALL before the IUD and ceasing YAZ.

Back to current time.

I saw my General Practitioner, my cardiologist, and a new Rheumatologist referred to me by my general practitioner.  She diagnosed me with sero-negative RA.  All of my tests came back normal, including the inflammatory tests, despite the obvious inflammation throughout my entire body and my pain and debilitation.  She said at one point that "you have an angry and aggressive form of the disease."  

I asked every doctor i had about the IUD and YAZ connection to my recent issues and pain and inflammation.  Every doctor said "not a chance" and "it's difficult to link a causal relationship between the YAZ/IUD and your recent issues because anything can set off an auto immune disease...."  

Okay, fine.  My instinct and common sense told me:
1. I stopped yaz and got the IUD and IMMEDIATELY my body went crazy
2. Within a few weeks, as I got worse each day, a hike sent me into some point of no return
3. I had serious inflammation and pain throughout my entire body and i don't think it's s coincidence that this all started THE DAY i got the MIRENA IUD INSERTED....

Therefore, I was reluctant to start methotrexate right away.  I started steroids (Prednisone) because I couldn't function without them (e.g., couldn't walk, move, etc.).  ABout 12 weeks ago, I broke down and said "fine, i'll start the meds and see if they work."   Last night, I took my 12th dose of 8 methotrexate pills (you take your dose once a week on this drug) and it has not worked.  How do you know it's not working?  You decrease the steroids to the point of nothing, if you still have symptoms and pain (i do), you know the disease isn't in "remission."  


About a month ago, my instinct kept nagging at me that i'm missing something.  And, late on a Saturday night, I googled "Mirena+RA" on my Droid SmartPhone.  When I found "Silicone Toxicity" and read the symptoms of Silicone Toxicity and they MATCHED RA symptoms, I almost died.  I was angry, I was happy, my boyfriend said "I told you to remove that IUD immediately after you started with the issues..."  However, I'm practical and I believe in science and I believe in my doctors. I trusted them. I called my doctors' that following Monday as I had found two bloods test that test for silicone:  Silicone anti-bodies and serum.  I called my general practitioner, my rheumatologists, and my OB/gyn to share my revelation and to see what they thought of it.  My general practitioner was open to doing the blood test, and went on a quest with "Quest Lab" to find the right lab numbers to do the blood work.  My Ob/Gyn said she knew nothing about mirena or silicon toxicity and had NO PATIENTS experience any issues with it.  My Rheumatologist also knew "nothing" and didn't think there was any relationship and said I should talk to my ob/gyn who gave me the IUD, because she knows nothing about Mirena and auto-immune diseases etc.  

My General Practitioner finally took my blood a few weeks ago, for the serum only, as the lab couldn't find the antibody test, and guess what?  it was 'HIGH' and my levels were .19 (normal is .05 to zero).  However, my doctor didn't know what to do with it.  He doesn't know about silicone toxicity nor how to treat it.  He is open to talking to anyone I find to learn more about it because now he is interested in what is going on.  I saw my Rheumatologists last week, and gave her a copy of the report, and she still was in denial that there is any relationship, but said she was frustrated she didn't understand, and finally said she was open to talking to any doctor that knew about this and was open to "deferring" her recommended next steps if I wanted to do a "detox" or try something that could help eliminate my silicone from my body. I Didn't bother calling ob/gyn again.

The day I got my blood test for silicone serum, is the day I got the IUD removed, in fact, I had it removed two hours after i had my blood drawn.  I immediately started "feeling better."  I can only say i feel more normal, my boyfriend said "you are acting normal again"....  I still, however, have joint pain. I"m still on steroids.  I'm still taking methotrexate and I want to DETOX from the silicone and found Dr. Jennings (http://www.DrJNutrition.com) and also Kristi's blog (http://mylifeaftermirena.blogspot.com/), and have wrote both of them today.

As it stands today, I don't know if the Mirena IUD and the cessation of my YAZ kicked off an auto immune disease (in this case i'm told i have RA), or if i truly have silicone toxicity and when i detox and get all silicone out of my body, my pain and inflammation will disappear.  

I DO think, regardless of what happens next, that the Mirena iUD is the cause of my current problems.  I don't know if my current problems are permanent or temporary, but TIME WILL TELL.  It always does.  The most frustrating part has been the gaps between my medical doctors, their denial around silicone and its effects on the body, and the inability to understand or the willingness to learn about the issues the Mirena IUD could be causing to some woman who get it.  

I want to hear more and learn more about other woman's experiences with Mirena and if they too have been diagnosed with RA.  If they too have done a silicone test, a detox, and what happened next?  

I canceled my appointment that was scheduled for tomorrow to get my first Humira injection (a biologic) that my doctor wanted me to start WITH the methotrexate.  I NEED TO TRY TO DETOX TO SEE IF IT HELPS.  I don't want to ADD any more drugs to my body at this point.  I want to get off steroids and feel better. I want my body and my life back.  

My doctor wanted me to start Humira (a biologic) and continue taking the 8 pill dose of methotrexate, folic acid, and of course my beta-blockers for my heart.  

I finally started methotrexate and folic acid, and it has NOT WORKED.  Last week, my doctor wanted me to add Humira injections to the methotrexate tomorrow…I canceled my appt today, because I want to see if I can figure this out and fast.

I told my Rheumatologist and my ob/gyn about the tests.  They still say "don't know anything about this silicone thing."  My rheumatologist is supportive of me tryint to "detox" to see how I feel after a detox and if my silicone levels are zero….and she said she will talk to any doctor who can help me… okay, whatever…

At this point in time, I'm open to doing a detox to see what happens to my body.  I'm still on steroids and in pain because I've been decreasing the dose to see if the other meds are working, they are not…in the meantime, I'm suffering and in severe pain…everywhere.

What can you do to help me? What can I do to help you and any other woman going through this….  

I'm concerned that the Mirena IUD is on the market and poisoning women and they are NOT listing it as a side effect.  I need to do something...

76 comments:

  1. Thanks for sharing ur information. i also had Mirena 9 months back and started feeling pain in my right knee. Doc said it s sign or early arthritis. I also had wieght gain, greasy hair, water retention in body which caused swelling in my hands, legs everywhere. I got rid of it today. i hope to get better soon.you are right Mirena IUD is on the market and poisoning women and they are NOT listing it as a side effect.

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    1. OMG I have the Mirena IUD and guess what I am in crippling pain in my lower back , and I went to see a neuro surgeon and he wants to do a back fusion on me, my lower back is loaded with arthritis and I am not that old to have this in my body all of my back pain started after the IUD, does anybody knows about a class action law suit?? We need to all get togheter and sue the crap out of them because nobody told me that I may end up in a wheel chair after the IUD.

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  2. There are several types of arthritis. This rheumatic, rheumatoid, reactive, infectious, psoriatic and gouty arthritis.



    Rheumatoid Arthritis Symptoms

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    1. So all these you named are caused by mirena? I was just diagnosed with having years of damage that show rheumatoid arthritis had progressed and causing current pain, tension, spasms that continue to show up after treatment. Before Mirena happy positive life with no health issues, no physical disadvantages or limitations, and physiologically issues.
      I get in an accident and now feel the after affects and see the results of the product from hell of 3.5 yrs

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  3. In many cases, women have reported that the Mirena IUD perforated or punctured the uterus or became embeded in the uterine wall.
    mirena iud side effects

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  4. Thanks so much........ I got mine removed yesterday, had for 2.5 years, never been so ill....... now have fibromyalgia and mental health problems...... what test do I need to ask for in terms of the silicon as it stacks up....... am in the UK thanks so much

    Maggie

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    1. It's a silicon serum test. I found it in a Google search and a Rheumatologist in California created the Silicone Serum and Silicone Anti Body test. My doctor called my lab and they found the Silicone Serum test. I will be posting update on my blog this week. I am currently at the Mayo Clinic and have already learned so much and my retest of Silicone came back today and it is "zero" -- yes, .00. So much to update. Stay tuned.
      I'm happy you removed the IUD. All woman and bodies react differently but when our bodies react, OH BOY DO THEY REACT! Mirena is hiding these findings and i have a feeling it will come out....

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    2. Hi Jody,
      I am so happy I found you! I had a mirena inserted 4 months ago and developed stiff fingers about 3 months ago. The pain has become increasingly worse, and my GP has diagnosed RA in my fingers and hands. I am 40, healthy and VERY fit. I am in disbelief. I told my husband it was too coincidental that this started not long after my mirena, but it has been so hard to find conclusive evidence on line. Thank you. I see my ob/gyn on Thursday. It's coming out.
      I am in North Australia.
      Are your symptoms improving?

      Helen

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    3. Hi Helen. I'm happy you found my blog helpful. I hope you had time to read the entire blog, as I continue to update my journey as I experience it and unravel the mystery that is me.

      I'm also happy to hear you are removing the IUD. I say -- always, always listen to your instinct.

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    4. OMG! You are the first person that I encountered with same side affects. On the product I would call the makers of Moreno which are the makers Bayer Aspirin and call my OBGYN who refused the removal of the product caused me to have what I believe a miscarriage from mirena rejecting my body and stages of pregnancy, and definitely caused issues with the device releasing to many hormones in the body. I went to see an endocrinologist regarding weight gain and inability to get it off with constant excercise and diet, as well as breast lactating and my last child was 7 yrs old, hair growth on face, and lack of wanting to do anything, nor found anything worth entertaining or felt the need to accomplish goals I had always worked so hard to fulfill.
      But just like you I really lost who I was and felt lonely, alone, and so confused like I was unable to think sometimes clouded. I have always been so completely positive school spirited extremely out going and during had felt so abandoned. And the OBGYN to remove it felt so hopeless bc he argued and refused to take it out. It felt like impossible with no way to remove what had plagued my life of side affects and confusion.

      Thanks for sharing

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  5. the mirena lawsuit has been shown to migrate to the pelvis, and adhere to the internal layer of the uterine wall and even ovarian walls. What makes this dangerous is that the device is difficult to find and remove.

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  6. My uncle is diagnosed with rheumatoid arthritis, believe me he feel tremendous pain. Doctor has prescribe him azathioprine medicine. We also done some research and found fish oil supplement are also beneficial in treating rheumatoid arthritis. Any suggestion?

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    1. Yes. I have a lot of suggestions. I will be posting to my blog soon. A big update of information. Stay tuned

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    2. Yes. I have a lot of suggestions. I will be posting to my blog soon. A big update of information. Stay tuned

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    3. apologize for my delay. I highly recommend he read Eat to Live by Dr. Joel Fuhrman and The Food Revolution by John Robbins (10th anniversary edition), also check out www.nutritionfacts.org. If he starts with these three resources, I am confident he will start changing his overall health and mitigating his pain. My journey has been a process of learning and being open minded, and truly believing that I can heal myself through various factors: spiritual practice (meditation, yoga), intellectual process (reading and gathering information about our bodies and health), physical process (exercise), and emotional process (finding someone to talk to who will listen to you, writing in a journal and documenting how you feel, record what you eat, etc.). Finally, go to functionalmedicine.org, and look for a functional medicine practitioner in your area and make an appointment ASAP.

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  7. Hi Jody,

    Great use of keywords, found your blog easily :) First thanks for putting this out there for the greater good. I've had the mirena for about 18 months and I dislike how my body's reacted to it so I think I'm going to have it removed. I'm searching for answers as to why my index finger is swollen and painful. It's on my dominant hand so cooking, getting dressed, brushing teeth.. well it's hard and painful. Went to the ER, absolutely no answers. I'm thinking RA or gout, history of neither runs in my family. I highly suspect the mirena as I experience random sharp abdomen pains and jawline acne only since having this inserted. Thanks and I'm looking forward to reading more about what you've found out!
    ~Katie

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    1. thanks, Katie. I'm glad you find this helpful. I need to start spending more time on the blog, but have been so busy working and healing. As well as gathering information and researching food, medicine, health, etc. It's been a journey, but don't give up. Listen to your instinct, and remember, FOOD IS A BIG BIG COMPONENT IN OUR HEALTH.

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    2. Hi Katie,

      I nearly fell off my chair when I read your blog. My index finger is also where the pain started! Sore and swollen, and particularly stiff in the mornings. It is getting progressively worse.

      I am going to keep reading! Did you have the mirena out and did your symptoms improve?

      Helen

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  8. Thank you for posting this! I went to get the Mirena today and it dawned on me that I should ask if it contains silicone. I have had allergic reactions to it in other products such as feminine products (note anything "breathable"), contacts, and caulk. I don't know what made me think to ask but I am so glad I did! I searched on my phone and found your blog. I told by OBGYN about your issues and she said she never even realized silicone was an ingredient. Now she is going to watch for these reactions in other patients.

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  9. Thank you for posting this. I have been a runner and swimmer for years and for the past couple months my hips, knees, and shoulders hurt so bad I can hardly function from the pain in my joints after any exercise. There's just no good information out there linking the two and I was starting to question my athletic abilities and committment, instead of questioning what the true culprit might be. Add that to hair loss and panic attacks out of no where and I think this four month Mirena expirement has met its end.

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    1. Yes. Please also consider food and how you choose your food. Check out my latest posts and please read some of the books i recommend. I am confident it will change how you think and approach your overall health.

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    2. Hi Pax,

      I too am a runner and swimmer and had my mirena inserted 4 months ago. Apart from being diagnosed with RA in my fingers and hands 9 weeks ago, I also have sore ankles and hips and thought it too was me 'just getting old'. I am 40, a vegetarian and have always looked after myself and exercised. This thing is coming out. I knew it was too much of a coincidence that this has all started since I had the Mirena inserted. OMG!
      Helen

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  10. I too had signs of an autoimmune disorder shortly after getting my IUD and had it removed within 8 weeks. I have done several detoxes and diets and have not been able to fully get rid of my hand, wrist, elbow and ankle pain. I would go get tested but 1. I hate doctors (most anyway) and 2. I wouldn't do any treatments. I fear that it is RA but I have been treating myself with diet and essential oils. For now I am OK.

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  11. I have just had the coil removed after having it in for around 9 months. I had it removed due to tingling down my legs and sharp pains in my abdomen. I also have sore teeth and eyes and a sore head. all of this has become worse since I have had it removed and I have shooting pains all over me. I am also going to use yoga and meditation to help restore my mind and body. I find it totally disgusting how women are being conned into having this evil thing put in our bodies and doctors are totally ignorant to not only what's in the IUD but also the damage caused by the coil. hope you all get well ladies <3

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  12. I had a similar experience. Within weeks after having the IUD inserted I was sitting in the doctors office dying from the worst joint paint everywhere! I had some random pain here an there before but never to the point of needing to go to a doctor. I am getting mine removed finally and hope to see some results. I take medication daily and still hurt... just not as much.

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  13. Thank you for your post. I am researching I've been dealing with chronic inflammation, fatigue & pain for about three years. I am HLA-B27 positive, have been to many specialist and no one can seem to figure it out. I've been on cimzia, humira, & remicade infusions. None of the above have been successful. I had a nutritionist mention to me that my IUD alongside being HLA-B27 was not a good combo. I didn't think twice about it because I've had for three years. Hence when my problems started. I did not recognize that until I was going over the conversation I had previous with the nutritionist, with my husband. He pointed it out and I started gathering info. I'm making an appointment with my Obgyn and sub-specialty internal specialist tomorrow. How crazy would it be after all the cancer inhibiting immune killing drugs,an adjustment in my marriage & family, days in bed, plus many more"not feeling like me". Taking out the simple IUD that never caused simple obvious side effects was the simple cure.

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  14. OMG. My story is exactly the same as yours. I had the IUD in 2011 and in 2012 I started having opthalmic migraines. In 2014 my legs and feet started swelling. My hands, fingers and wrists were in excruciating pain. I felt the need to nap all the time. I would get in 12 hours of sleep and still feel tired. I went from maintaining a full time nyc career (with long commutes), running 2 miles a day, and managing 3 young children to not being able to get through just a 9-5 day without a lunchtime nap. I was also put on steroids, plaquenil and finally methotrexate (injection). I suffered MS like symptons - i.e. burning, tingling, confusion, blurred vision, etc. but the mris all came back normal. The bloodwork showed I was ana positive and histone positive. All other results came back normal. After reading your passage, I made an appt to remove MIRENA today. I went from a completely active, healthy gym rat to popping steroids every 4 hours to walk and function. This has been truly a nightmare and no one understands the trauma this has caused me and my family. My rheum, my gyno and my primary physician are all denying MIRENA has a link - but I cannot accept that my body decided to just shut down like this.
    I need more info on DETOX. I have started a gluten free diet; it has helped with all the weight gain but not too much on the joint pain.
    any help is appreciated. Be well everyone xox

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  15. Hi. I've had a Mirena put in to control cancer cells that were trying to form in my uterus back in November 2012. Since then, I have been on a slippery slope of exhaustion and over a year ago, I started to have pain in my elbow joints. This past July, I was diagnosed with RA. The day after tomorrow, I am finally having it taken out to see if it helps. My problem after that will be the lack of shedding of my uterine lining for the reason I got it in the first place. Sigh. Hoping for the best.

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  16. Hi. I've had a Mirena put in to control cancer cells that were trying to form in my uterus back in November 2012. Since then, I have been on a slippery slope of exhaustion and over a year ago, I started to have pain in my elbow joints. This past July, I was diagnosed with RA. The day after tomorrow, I am finally having it taken out to see if it helps. My problem after that will be the lack of shedding of my uterine lining for the reason I got it in the first place. Sigh. Hoping for the best.

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  17. I just had the iud inserted yesterday and woke up this mornin with the worst joint pain in my arms neck and legs I can barley move now I'm starting to get worried

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  18. I just had the iud inserted yesterday and woke up this mornin with the worst joint pain in my arms neck and legs I can barley move now I'm starting to get worried

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  19. I had my Mirena inserted in Jan of 2015. Since then, my health has declined and now have a diagnosis of chronic fatigue syndrome and raynauds syndrome. I also have symptoms of RA with excruciating pains in my joints and arms, but no blood test to confirm that I have RA. I'm hoping after reading this that I will have my IUD removed ASAP to see if my symptoms improve. Thank you for this blog :)

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  20. Can't wait for tomorrow morning so I can call my doctor to schedule the removal of the mirena iud I've had for 10 months. About 3 months in, I started having serious inflammation problems, went to several different doctors, xrays, chiropractor, with agonizing hand, wrist, shoulder pain that would keep me from sleep 3-4 nights a week. Finally blood tests revealed severe aggressive RA. Predisone brought some releif, but as soon as I stopped taking it I'm in constant flare state. Methotrexate and sulfasalizine do nothing for the inflammation and pain. After coming across online links between Mirena and RA, I'm hopeful that once I have the iud out I can get some relief. I can't take much more of this constant pain and lack of sleep.

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  21. I also had severe knee pain! Immediately after I had the Mirena inserted .1 year later I Had knee surgery because the Dr. thought I needed it. Unfortunately the surgery didn't help. I had the Mirena removed but I'm still having trouble climbing up & down stairs. There's no way I can run or play tennis anymore. I'm so sad. I just want my life back that I had before Mirena :(
    How do I detox? Is this a forever disability now?

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  22. I must thank you for posting this as well as to the other women who commented because I feel identified. I have terrible joints pain and it's getting worse. My blood test said vitamins, iron, calcium all perfect, no arthritis at all. They even given me high dosis of vitamin D to see if that was the issue but no. I started to have these pains in February 2016 and in January 2015 was when I had the Mirena inserted. I don't know if it is actually the Mirena, seeing this I start to think that it may be. will you have these pains forever?

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  23. I had Mirena inserted in July of 2014 and two weeks later my groin started to hurt, it felt like a pulled muscle. I attributed that to my recent routine of hitting the gym, and thought it would go away. After a few months I started seeing doctors about it, got xrays, and had no luck in figuring out the issue. Saw a few chiropractors as well but the thought didn't cross my mind that it could be from Mirena, so I didn't mention it to them. A few months later it dawned on me and I started looking up Mirena and groin pain on google, and saw lots of stories like mine. I had it removed after having it for 1 year, now it has been out for 1 year, and my groin still hurts. Hoping that changes soon. Amazing to hear all of these stories.

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  24. I had Mirena inserted in July of 2014 and two weeks later my groin started to hurt, it felt like a pulled muscle. I attributed that to my recent routine of hitting the gym, and thought it would go away. After a few months I started seeing doctors about it, got xrays, and had no luck in figuring out the issue. Saw a few chiropractors as well but the thought didn't cross my mind that it could be from Mirena, so I didn't mention it to them. A few months later it dawned on me and I started looking up Mirena and groin pain on google, and saw lots of stories like mine. I had it removed after having it for 1 year, now it has been out for 1 year, and my groin still hurts. Hoping that changes soon. Amazing to hear all of these stories.

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  25. I had the Mirena IUD inserted in September of 2014 - 2 months later, I started with severe pain and inflammation in my wrists and index finger on my left hand.. It progressively got worse - and fast. I finally decided to go to my primary Doctor, had lab work done, came back positive for Severe RA. My rheumatoid factor was sky high. Mind you, I'm only 26 and in good health. My life feels like it's been set on fire - I don't understand how my body could just quit on me like this.

    -Cris

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    1. Did you get better? If so, how long did it take you?

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    2. Gabriela,
      My RA factor was sky high (so they diagnosed me with severe RA) I am taking meds and they help tremendously. I am currently looking for different alternatives in birth control since I do not want any more children. I am married so we have a very active sex life, which is why I haven't taken out my IUD. Each day that passes, I get closer and closer to a sure choice of taking out my IUD myself.

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    3. Headed to clock in for Wk and I slipped on wet floor. Go to Orthopedic doctor for treatment going through Workers Comp and told the pain I am experiencing now is from the arthritis seen on MRI scans showing long term RA that had shown to progress rapidly throughout mid to lower back, spine, and hip areas. These are all the same problems prior to removal I suffered. I was told that this device was mild, little aside affects at first and it would feel the same and oh yeah clear collection, no weight gain. What a joke!!! And Dr Twitchy said no problems showed arise affect wards. They disappeared afterwards but a simple fall and those injuries are quit similar in location of pain. caused that I thought I would get over and heal from. I suffered was the hell of 3.5 yrs Dr Twitchy the OBGYN pain caused from a device that damaged our bodies and will continue to cause on going pain. I have reached out but no one will challenge Mirena through trial and take the failed product off the market. And the horrible inhame treatment of Dr Twitchy should have concequences for refusing to remove and attested my side affects weren’t caused by the product he was so include to back up. There should be consequences when doctors push medication, treatment, devices that end up harming and causing negative impacts of our health and well being.

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  26. I had my mirena put in Christmas 2014 after the birth of my daughter. I started getting welts and severe itching in my scalp and all over my body. In Nov last year my finger joints started swelling and were very painful. I have been seeing a Rheumatologist since Jan and I am a mystery to him. My RA is negative on all testing but my inflammation testing was very high. I have been on prednisone and plaquenil and while they seemed to get me over the pain, now that he is weening me off the drugs my hands are getting stiff and painful again. The only thing different in my life is the IUD. I have piled on the weight as well, but that could be from the steroids. I have decided to get the IUD taken out tomorrow but am going to ask my Gp about the silicone testing.

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  27. I had mirena put in October 2014 and ever since have had joint pain which has become increasingly worse I went to have it removed today and got talked into the skyla if there is related info here let me know bc I'm about to just have it taken out and not replaced if iud is gonna continue to cause these problems. Everything here is what I've been experiencing chronic pain joint pain back pain pelvic cramping pain. Angry depressed ect. Preliminary dx for fibromyalGia ra mental health.

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    1. Oh and every time I have bloodwork everything comes back normal ugh

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    2. Oh and every time I have bloodwork everything comes back normal ugh

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    3. Hey Jessica.
      After the mirena was removed did the symptoms get better? Your symptoms sound very similar to the ones I experience

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  28. I also used to have everything coming out as normal. 3 weeks ago I decided to take it out. Now I can see hell of a difference. My pain has diminished quite a lot. I still have some joint pain but not as near as it was before. It was so bad. The thing is, I talked to my doctor and she said it couldn't be. I asked her for silicone blood test and of course she said no. So that's why just simply decided to take it out. Do any of you have to take anything for getting better?

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  29. I was diagnosed with severe RA after I had the Mirena put in.. I've been taking medication (methotrexate & Enbrel injections) once a week - I decided to see how long my body could last without my meds; an entire month. I finally had a joint flare up in my wrist and neck. I'm considering pulling out my IUD myself to see if my flare ups will last even longer without returning.

    I feel so hopeless :(

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  30. Cristal,
    I get it so that means you still ahve the Mirena inside but at the same time taking the meds. The only thing I'm worried about is if the pain will never go away. I mean i have it taken out and now I feel way much better. I can do things as always, sleep just slightly pain but nothing bad. I just hope it goes away. I totally get you about birth control. I happen to be the same and i don't want anything with hormones but not sure to go for the other copper coil as well. Not so sure. I hope your health can improve!

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  31. It's been a month and a half that I have taken out the Mirena and I have to say that all my pains are completely gone. I can't believe I was feeling so bad that I couldn't even pick up baby or use the stairs and now I'm fine as I used to be. Just wanted to give you an update in case something was wondering how long it has taken to feel better. I reckon it may change according to people. All I need to do right now is to think a new contraceptive.

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  32. Thank you so much for sharing. I had my IUD inserted May 2015. My knee flared up around Thanksgiving for no reason. After going thru the medical world being referred all over ended up at rheumatologist who diagnosed me with RA despite my blood work being normal. I refused meds and decided to follow The Autoimmune Protocol diet which helped ease the pain in the joints of my hands and feet and take down some inflammation in my knees. But my functional med doc also found some "toxicity" in my body not sure if it's heavy metals or what you're describing? He's got me on some Chinese herbs to flush it and he Highly recommended me to have the IUD removed. I have pretty much had issue with it since getting it in (emotional instability) so I was grateful to finally have a Dr who not only supported me removing it but encouraged me to.

    Had it out 2 days ago. I found your blog because I noticed my hands aren't quite as achy today as they have been and my feet aren't bothering me at all. So I started to wonder if the UUD was linked to joint issues?? Hmm... We will see how much I improve over the coming weeks?

    You posted this years ago, I'm curious how things turned out for you?
    Misty

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  33. Hiya. I was already diagnosed with psoriatic RA and truth to be told i have got worse.. miserable inflamed sore joints!
    It's definitely connected. Can't wait to get Mirena out. And prior i was in very calm and managed stage of my autoimmune disease... There should do more extensive tests before they start to fool us with nonsense!

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  34. I was amazed to find this blog and all of the comments. I will just add my experience for the record:
    I'm 27. I was just diagnosed with seropositive RA and I'm beginning medication this week. My symptoms started about 10.5 months ago (joint stiffness in hands and feet, gradually progressing to bad neck and shoulder pain along with swollen fingers). I told all my doctors the symptoms began as soon as I got my copper IUD inserted (paraguard). Within a couple of days, I was waking up with sore hands.
    I also believe in science, and I'm not one for the concept of "detox," but the stories here are all hauntingly similar.
    I do know that RA is a disease that is "triggered" by unknown causes in addition to genetic predisposition. My theory has been that the trauma of getting the IUD caused my body to overreact and it set off the mechanism for RA.

    I think it's time to get this IUD removed. It's caused me too much pain. I'm just worried about switching to condoms. (I also have high blood pressure so I can no longer be on hormonal methods.)

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  35. Had the Mirena inserted October 2014 to help with heavy pre-menopausal bleeding. It did it's job for that matter. However I have experienced extreme joint pain, life altering lethargy, skin eruptions and hair loss. Being 53 I figured this was just part of the aging process. I'm also overweight so I was certain that had something to do with it as well.

    One night last week I Googled hair loss and Mirena was top of the feed. I had it removed yesterday and woke up this morning, less than 24 hours later, with no knee pain for the first time in years. I'm hoping this is just the start of better days ahead.

    I wouldn't recommend this option to anyone!

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  36. http://acrabstracts.org/abstract/contraceptive-factors-are-associated-with-serum-antibodies-to-citrullinated-protein-antigens-in-women-at-elevated-risk-for-future-rheumatoid-arthritis/

    Please do check out the above link: It is for a professional article from the American College of Rheumatology and describes a scientifically-based link between IUD use and RA. I found this of value. I saw a physician for a TL and he talked me into a Mirena instead. I was in perfect physical health prior to the insertion; in the weeks following I suffered debilitating diarrhea and cramping, severe exhaustion and, ultimately, joint pain. I had the Mirena removed after a mere 7 weeks and my GI symptoms have completely resolved. The arthritis, however, is a permanent condition requiring the use of harsh medications to maintain function. I think it's great that you have this blog, and it's wonderful to learn that I am not alone in my pain - but ladies, we have to report our problems with this device to the FDA. I was not made aware of the potential side effects or contraindications - except the increased risk of ectopic pregnancy, uterine performation, and cessation of menstruation. The other problems - abdominal distension so severe I couldn't eat properly, pain so severe I just lay around in bed, and arthralgia debilitating enough that at times I could not move various parts of my body - my legs, arms, hands and even my jaw. There ought to be full disclosure regarding the adverse effects of these devices, and the FDA needs to investigate their long-term safety. I'll never meet any of you, but I am grateful for your courage to speak out.

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  37. I was on a copper T iud for 20 years. Had Mirena put in 2 years ago. Pain in hands,shoulders, progressively got worse. Doctors, cortisone, chiropractor, physio and then hospitalised to find seronegative arthritis in hands feet and shoulders. Seronegative. ...not showing up in blood. Spoke to my gynae and rheumatologist about Mirena. Both said it's not linked. ...but that's the only thing that has in the last 2 years. Managed to get an appointment at another gynae in March and having it removed. ..glad to hear others have had a similar experience and that hopefully if I remove it I can perhaps live pain free again.

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  38. People come through, often trespassing on private property, and just hack away at whatever they want. It's sickening. Best Iron Supplement

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  39. I had Mirena inserted in March 2017. About 2 weeks later, my feet started killing me every time I took a step after sitting or lying down for an extended period of time. I thought I had developed arthritis, but I couldn't afford to see a doctor. After 5 montgs, I decided to have the Mirena IUD removed, and guess what? My "arthritis" is GONE! Poof! I 100% believe it caused it. No doubt in my mind.

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  40. I am also happy I found your article. I am 22 years old and have always been sooo healthy. 8 months ago I had the Mirena IUD put in and all of the sudden started having pain all over my body as the months have gone on it’s just gotten worse.. I have a family history of Auto immune diseases such as RA and Lupus. I finally went to see a Rhumatologist and he said there is no correlation between Mirena and the symptoms I have been having. They Mis Diagnosed me with RA and now think I have lupus or early on signs of Lupus. I can’t function I have been in such bad pain I just want to die and it’s random all over my body. I will be getting my IUD out probably this week I am hoping. Thank you so much for all this info��

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    Replies
    1. I’m also curious to know any one who’s had the same symptoms; did they ever fully go away after having Mirena removed. Or did the IUD trigger an Auto immune disease?

      Delete
    2. Mine was dislodged and the symptoms went straight away. When it was replaced they returned. The professionals cannot attribute symptoms to the Mirena because they will be sued. My Gynaecologist did not hesitate sending me to a rheumatologist and advised me to consider and weigh up my options.

      Delete
  41. Makayla,


    The Mirena IUD is very easy to pull out on your own. That IUD aid my biggest and only regret in life. Years late, I have full blown RA & Lupus. I am on methotrexate and Enbrel.. So saddening, but this toxic piece of shit caused me a lifetime of pain and disease. Pull it out if you cannot see a doctor soon!

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  42. I too got my IUD inserted September 2015. A year later, I was having bad back pain and constant uti's. My doctor couldn't find out what was the issue. I even went back to the gynecologist telling her I wanted to take the IUD out. She talked me out of it. This progressed to random stomach and back pain.I've been to many specialist including a kidney specialist with no relief. Today, I'm with RA (diagnosed) bad knees, back, overweight-some of my own doing, have bouts of RA in fingers, wrists, and ankles every now and then. I am getting my IUD taken out ASAP. My first thought was there was a link between the IUD and RA.

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  43. I feel for all of you but am glad I am not alone. I am 47 and had got my mirena 3 years ago. Shortly after I started having severe knee pain. I am a runner and was training for a race when the pain got so bad I could not continue running. I got t where I could not even walk without my knees flaring up so bad. Then last year I started having sever back and hip pain. I even had my spine fused at L4L5 even though in my mind I really didn't understand why this was happening. I have been extremely healthy my entire life. Then right after my fusion surgery the pain in my feet and hands became unbearable, and I had previously unfathomable fatigue. I could not function or get out of bed. I was a lifeless lump. It finally occurred to me that my own body was attacking me. I tested positive for RA and lupus. I had read that if you have a Mirena you have a 268% greater chance of getting RA so I went to my doctor and had that thing yanked out! Within 5 days my hand and feet pain was almost completely gone and I had my energy back. I'm still having extreme hip pain so maybe that is unrelated, but removing my mirena was the best thing I ever did. Getting it in the first place was the worst thing I ever did.

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  44. I read the above comments and I can't believe these evil devices are being put in women! I'm having my Mirena removed tomorrow and it cannot come quick enough! I had mine inserted 2months ago after the birth of my daughter as I was told it helps control Endometriosis as I suffer from Endo. Within days of having this device inserted I had a massive panic attack! My anxiety has been through the roof and I'm also depressed and very irritable. I have bad fluid retention,my hair is falling out in clumps and it's very oily. I'm so exhausted like drag your feet too tired to breath exhausted. I get sharp pains in my abdomen. My back and hands and right knee have been so sore and now my shoulder and wrists. I've been in so much pain in my back and shoulder that I can't sleep which makes everything worse. It's been worst thing I've ever done getting this horrible Mirena device.

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  45. Hi, I'm soo happy I found this blog... I have mirena for 4 and half years, I have muscle pani, bones pain, stiffness, I could sleep all the time. I done all possible test, everything was always normal. I suspected mirena but couldnt find anything realeted to my problems on the web. I'm EMT and all the doctors sid that couldnt be becouse of mirena. My problems are geting wors every cycle, specially for the last 6 months. I was starting to loose my mind. I fell like I've been hit by a train every day. Please tell me how long did it take for you guys to feel better after you removed it? And sorry for my English, I'm from Slovenia.

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  46. When I read your account where it said you “couldn’t close your fist” I felt vindicated. As soon as I had the mirena the joint pain in my back, knees, elbow, shoulder, ankles and particularly in my hands started; even though I was on a strong prescribed painkiller. Unfortunately for me I had pre cancerous cells and after insertion of the Miren this improved. My choice is, do I risk developing cancer to get rid of the pain and regain full use of my hands to comb my hair and open a bottle of water? It may seem obvious but despite the risks that a hysterectomy presents I will opt for that and get rid of the Mirena. Why would I want to poison myself?? After reading your experience I will be requesting a silicone test this week. Thanks for sharing and good health to you all. Knowledge is power so get well soon.

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  47. This was really an interesting topic and I kinda agree with what you have mentioned here!
    https://noan.net/hapcheta/bolki-stavite-artrit

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  48. Thank you for posting this blog. I had my Mirena put in Feb 2018 due to endometrial hyperplasia and persistant bleeding. About 2 weeks after the insertion I felt extreme anxiety which lasted about 2 months.
    The bleeding continued despite the Mirena being insitu. I called the Gyne and they said it takes a few months for this to settle. In the meantime I continued to go to the gym but progressively became very weak and stiff, my left foot developed a tendinitis during this time which is still present. The stiffness is like nothing I can explain. So, I started to modify my exercises as I simply couldn't do what I could do 3 months earlier!. The month of May came about and I actually had 3 weeks of feeling ok...the bleeding had stopped but I still felt very stiff after sitting for 15 mins or getting up in the morning. June 2018 the bleeding started again and progressively my back, hips and knees became more stiff (pain only present when the joint has been still for about 15 mins). Its now October and I have spontaneously developed wrist pain. Before the insertion I was very fit, going to the gym 4 x a week, eating clean and had a happy disposition. Now, 8 months after insertion I have had a period everyday for 8 months except for 3 weeks, I'm depressed, my relationship has been affected with my husband, I have gained 6 kilos in 8 months, I'm stiff and have pain in my back, hips and knees after sitting or lying for moderate periods. I'm seeing the Gyne on Thursday to have the Mirena removed.

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  49. Update from the 1st of October post! I had the mirena removed 24 hours ago. My joint stiffness and pain has improved by 50% already!!! Incredible...get it out if you have one. I also have an opinion that if you have an autoimmune condition like asthma or psorisis then a mirena is probably not a good idea. I cannot believe how much better I feel. The gyne didnt try to convince me to keep it in, she agreed it needed to come out. I have been put on zoley birth control pills now.I think it also helps with post mirena crash. Some people swear by the mirena but if you have the propensity for an immune condition maybe find another option. So relieved.

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  50. Hello. You lady's don't understand what it has meant to me to find this. I had the iud placed 2 and half months ago and have been in pain ever since. The pain moved around from my hands to shoulders now in my ankles. I am calling the Dr Monday. I felt like I was loosing my mind. But on my drive home today o thought could it be related. I am now sure that is what it is. I was about to make an appointment to see a rheumatologist to see if that was the issue. I am 34. Thank you all for sharing this with us.

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  51. Birth control from HELL- Mirena and OBGYN refusing removal for 3.5 years. Also anyway one can provide treatment on arthritis and hand numbness and tingling causing pain when sleeping. I found out from MRI results I have arthritis that has shown to be there multiple years and has progressed more rapidly then normal. I have no one in family that has or had issues with arthritis in back hip region.

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  53. Jody, your story brought tears to my eyes. Reading this felt as though I wrote it myself. I started Mirena, ironically very close to you- 04/05/12. (I am currently on my 2nd one) Then I suddenly started having full body pains. I was diagnosed with RA, even though my symptoms did not quite match (pain would travel to different parts of my body, hands; feet; toes; fingers; knees; hips; shoulders; including muscles, not just joints and my chest sometimes) I also started having eye issues (severe chronic Dry eye and blepharitis) I too am on Restasis. I have dry mouth- so bad I have had to have several of my back teeth removed due to deterioration. My pain is sometimes debilitating. But X-rays still show no joint damage. My blood work is all out of wack (Vitamin D deficient and Iron deficient, for example. But I eat a very healthy diet of mostly raw foods and lots of veggies- very rich in iron and vit D. Now I can't close my fists. My boyfriend believed it was my IUD. I asked my OBGYN and Rheumatologist, both said it wasn't related. Several different medications for RA were not working. Most pain killers do nothing for me unless I take double the normal dose. I struggle with weight, even though I eat healthy and am very active (3rd degree black belt in karate) No one seems to know what is wrong with me. I just recently moved, so that meant starting all over with new doctors. My new primary very strongly believes all my issues are related, and that the Mirena is the cause. She recommended taking it out. I went home to think about it and to do some research. I have found a few things so far... But this blog... wow... it's me to a T!! I had to write and ask... it's been over 7 years now. I would love to know if things got better for you. I am wondering if I remove my IUD, if I will get better. So I am dying to know how things have changed for you since you had yours removed. I am hoping this one thing could change my life. Thank you for your time.

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