Oh, how my heart aches thinking about all the unexpected aches that more women will experience from Bayer's newest contraception, which appears to be Mirena, Jr.
The FDA recently approved a new IUD, manufactured by Bayer. It's called Skyla.
It's a pretty name. Sounds harmless. The name Skyla is Dutch in origin. It means scholar, or shield of knowledge.
So, for name's sake -- let's shield ourselves with some knowledge.
"The [Skyla] reservoir is covered by a semi-opaque silicone membrane, composed of polydimethylsiloxane and colloidal silica." [SOURCE: http://www.rxlist.com/skyla-drug.htm]
Same as Mirena, Skyla uses silicone, which is known to cause autoimmune issues that will cause your body to attack itself. The result of that can only be left to the imagination. It can affect your body in countless ways and possibly cause permanent damage, including lifelong autoimmune disease. In my case, I was diagnosed with Sjogren's Syndrome (an autoimmune disease) after using Mirena.
Also like Mirena, the active ingredient in Skyla is levonergestrel (or LNG), which is a hormone (a second generation synthetic progestogen). It's no secret that hormones are linked to an increase in clotting. But in my opinion, it is not something that is discussed enough.
Just six months after having Mirena inserted, clotting caused me to develop Avascular Necrosis (bone deteroriation due to lack of blood supply) in my hips and shoulder. You can read MY STORY to learn more about the serious effects AVN has had, and still has, on my life.
The difference between Skyla and Mirena is that Skyla is intended to release 13.5 mg of LNG, while Mirena intends to release 52 mg of LNG. Skyla seems the better option, having less hormones involved. Though, I would never go out far enough on a limb to suggest to any woman that a hormonal contraception is a good choice.
In my opinion, the daily release amounts of LNG cannot be trusted. One study I previously shared showed that women with low body weight or high SHBG (Sex hormone-binding globulin) levels, increased amounts of LNG were released. That same study shared that, in these cases, the LNG could also become systemic (meaning that it affects the entire body, and not just the uterus, as it is intended to do).
Skyla, unlike Mirena, is being marketed to women who have not had children. It is also marketed as a 3-year IUD, whereas Mirena is marketed as a 5-year IUD.
As I've stated before in my blog, I am not a doctor. I only wish for women to educate themselves about the harmful possibilities that could affect them. I always advise women to take a close look at their family medical history. Based on my experience and research, if autoimmune disease or clotting is a your in family health profile, I would suggest avoiding Mirena and Skyla altogether. There are other warnings provided by Bayer -- please read those also.
If you are able to explore other options for birth control, I'd suggest staying away from synthetic hormones. They are not good, natural hormones.
Above all, make an educated choice. I did not, and because of that, my health profile went from nearly perfect to just plain scary.
Don't be fooled by a pretty name. It's what's on the inside that counts.
Please visit this link to learn more: Mirena IUD Lawsuits Don’t Deter Bayer From Getting New IUD Approved
http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting/
Just wanted to say thank you for this blog. I have had my Mirena for 2 years now and I hate it. After googling side effects of the Mirena I found your blog. Along with a long list of other side effects I have experienced because of it I have recently started to experience joint pain in my left hip and knee. After reading your blog I immedialty called and made an appointment to have my Mirena removed as soon as possible. I am also considered to have low body weight and was never informed of the side effects that could occur because of the Mirena. The Mirena is marketed as a safe and effective birth control but after all of my research I have to say that it is the scariest thing I have ever put into my body. I would never recommend it to anyone.
ReplyDeleteThank you for commenting! I hope that your joint pain is not a major issue. It could just be inflammation, which a lot of women seem to experience after Mirena. I'm SO glad you are deciding to have it removed. I hope that your pain disappears when you do! Best of luck to you and well wishes for a healthy future!
DeleteTHANK YOU for raising awareness of the connection between the Mirena's silicone and autoimmune disease. I will now be researching this a bit more, because I think it may be the cause for most of the health issues I have.
ReplyDeleteI have had 2 Mirenas, one for 5 years, and my current one for about 2.5 years, and have been developing some health problems since having them, but haven't been able to really make a connection between the two. After I got my first one out, my doctor and I decided not to insert a new one right away, to see if my hypertension improved (that was the most pressing problem at the time). After a few months, it did not, and he told me that it wasn't the cause, so we went ahead and inserted a new one. I've been really reluctant to pin the blame on my Mirena because it helps me so much with my bad period cramps (it's possible that I have endometriosis, but it has not been confirmed yet). Over the past year or so, I have been developing more and more health issues, and doctors have been either stumped or unwilling to even try to help me find the cause. I've tested negative for the common autoimmune conditions (Lupus, RA and Celiac - though the Celiac test was done incorrectly, so I consider it inconclusive), but I do have an elevated ESR. The most troubling thing was that last year I was diagnosed with Interstitial Cystitis. The symptoms of that actually do correlate with the time frame of getting my second Mirena, and IC is believed by some to be an autoimmune condition.
I actually have my annual gyno appointment coming up, and I am definitely going to discuss my findings with my doctor. Funny thing, I found your blog because I was looking up Skyla after hearing about "Skyla, the new levonorgestrel IUD" and thought it might be something I'd like to switch to. After finding out what it really is... definitely not!
I'm so glad you were able to find this before using Skyla. I'm very sorry to hear that you've had to deal with these frustrations. Doctors say it is hard to pinpoint a cause and effect. I do believe that it is, and that most mean well when they say it, but it also makes you wonder why no one is doing a study about the autoimmune and mirena connection. To me, the trend is obvious -- especially after hearing so many women's accounts after using Mirena.
DeleteIf you have an elevated ESR, there is something going on there. Have you been tested for Sjogren's Syndrome? That is what I have, and an elevated ESR in an indicator for that (along with several other autoimmune conditions).
I don't know much about IC, but I have had heard everything from women getting shingles to Rheumatoid Arthritis and in between. When our bodies go into an autoimmune state, there really is no telling what the outcome would be. I can't speak to IC in particular, but I'd have to guess that Mirena could have triggered it (if it is considered an autoimmune condition).
I wish you all the best, and good luck at your appointment! Thank you for commenting!
Are there any birth controls you do recommend? I'm quite hesitant about going on one. After having twins I went on the Mirena and had to have it taken out because my uterus is a tad too small and I took it as a sign that it wasn't meant to be. I did not go on anything after be cause my husband was overseas. Now he is home and I'm looking to go on something because we're not ready to have more kids just yet. When I went for an appt about a year ago the dr said that because I'm prone to migraines and sometimea have isssues with orgasm, the best option for me wiuld be a diaphram -which was not something I'm comfortable with. Now I just went in for my annual and my dr was very pushy about how lucky we've been not to have gotten pregnant and how I need to be on something immediately. She suggested Skyla but I'm just hesitant about having it in me. I'm a big believer of natural ways and part of me thinks that when we're ready it will happen and but I don't want ro be naive about it either and know that I don't want to add to our family yet. If you have any auggestions for me please let me know thank you!
ReplyDeleteSorry for the late response, Brianna! Honestly, I wish I did have a good recommendation, but I don't. It seems they all are associated with risks. However, I have used the Nuvaring and Depo in the past with little to no side effects, but I used them both for very short timeframes (a few months at most). I might suggest the copper IUD, but it seems like an IUD may not be a good choice for you. I wish I had a good suggestion, but when you create a product with the sole purpose of disrupting a women's natural cycle, you just never know what you are going to get. My best advice is to research all of the components, what they are made up, what ingredients they use. Also look at all the side effects - read those reported by actual users and the warnings provided by the manufacturers. Know your family medical history and make sure that you discuss that with your doctor. If you have any doubts at all, go with your gut.
DeletePersonally, I don't trust any of them any more - for birth control sure, but for personal well-being, not so much.
Best of luck to you! These are not easy decisions to make.
Hi Denise,
DeleteThank you so much for writing about your experience. I was considering Skyla (at my doctor's recommendation) but have had what some doctors consider an autoimmune response after an illness. I also get migraines. You said that you did try the nuvaring...what was your experience with that? I'm also considering the copper IUD. So many great choices. Just kidding... :)
Thank you for this article! I had skyla placed on April 1st and first came acne, then mood swings, spotting constantly, and now total loss of sex drive. I am only 23! I have an appointment to het it removed tomorrow. I wonder how many women are out there on anti depressants because of their hormonal birth control. Scary thought. I would not recommend this skyla iud to ANYONE. It makes me feel like a crazy person. I cry a lot for no reason and my patience is practically non existant. I look forward to start feeling like me again after tomorrow.
ReplyDeleteThank you I only wish I had read this sooner I had the skyla iud placed about 11 days ago and I have to say worse mistake ever. I had my iud removed 6 days after placement due to severe pelvic pain, fevers, nausea and headaches. My doctor couldn't understand what was going on so she did an ultrasound to see if the iud was out of place however, it wasn't so she ram blood work which showed a high while blood cell count and decided it would be best to remove it, that was 4 days ago I'm still experiencing the same symptoms and on top of those my menstrual cycle started and it is so heavy and painful. Im keeping my doctor updated with everything going on but I'm really starting to feel like a lab rat. I hope my story gives everyone a little insight of what can happen with the skylark.
ReplyDeleteGreetings,
ReplyDeleteI would like to stay up to date on your research/progress surrounding your thoughts /findings in regards to Mirena and Autoimmune disorders. I was a healthy woman prior to Mirena. I had my children and was done by the age of 32 so I got Mirena. My nightmare started shortly after in the form of Kidney problems, joint pain, hip & back pain is unbearable. I am now 38 (on my second Mirena) and I am now suffering from horrible autoimmune symptoms. I have awful rashes on my hands and face (like the lupus rash), I am always tired, I hurt and feel 80. I have been to so many doctors and nobody can figure anything out (my ANA is negative). I am having it removed today (I just recently started making a connection between all this and my IUD). I fear I may be spending my life like this. Will Bayer ever have to face the women who suffered in other ways?
I had my Skyla put in on July 24th. the day of went very smoothly. I was told I was a great patient. I had a little cramping and some light spotting which I expected. After nine days of continuous light bleeding and constant cramping I returned to the doctors office to have an ultrasound done. They said everything looked fine and that I should just give my body time to adjust to the hormones. Now 29 days later, I've only had three days that I've not had some type of bleeding and probably about 5 or six that I've not had cramping. I've gained about 5 pounds and I've noticed that the joints in my fingers have been sore. I never made any connection until reading these other stories. I have a follow up appointment next week. I'm torn between giving this a chance to adjust or if I'm one of these people whose body is clearly saying "GET THIS OUT OF ME!" I'm leaning towards the later. This wasn't what I had in mind when I selected this option. I had hoped to ease what had become painful cramping three or four days a month and a much convenient form of birth control than the diaphragm. Now I have cramps all the time and no need for birth control because the way I feel sex is completely out of the question!
ReplyDeleteIf you haven't already gotten it out I would suggest waiting. For me, the spotting and bleeding didn't stop unti la few months after insertion. Now after 6 months of having the Skyla IUD I have regular periods. However throughout these few months I have been noticing changes in my body and finally realized that most of them are linked to this birth control. Including acne, that I hadn't ever had prior to Skyla, rapid mood swings (especially on/ around my period), more bloating and cramps and breast tenderness on/ around my period, and decreased sex drive. I did not have these side effects happy to me all at one or right away, but they have accumulated over several months. After months of not knowing I finally understand the reason behind all these changes.
DeleteSo I was just going to ask my Dr. about Skyla or Mirena at my postpartum check-up tomorrow. I already have vitiligo ( an autoimmune disorder)so am obviously prone to such things. Can only imagine what a Skyla or Mirena might do to me! Had considered Paragard, but the reports of heavy, ongoing bleeding turned me off to it.
ReplyDeleteIf all on here are so against Skyla & Mirena, then what do you suggest for effective birth control? Which is the least of all the evils?!
ReplyDeleteAfter baby #2, and 5 months of bed rest, I tried Skyla. I had issues with high white blood cell counts during pregnancy, and now have sjogrens. Crazy moods, anxiety, can't stop eating, and now realizing it's my IUD
ReplyDeleteI also struggled with high white blood cell counts after the Mirena IUD (but not before). It really used to scare me because I automatically associated that with leukemia, and the swollen lymphnodes only fueled my fear. I was a bit relieved to learn I had Sjogren's, because that was probably what was causing my white blood cells to increase. I hope that you are able to (or have) have it removed so that you can work on getting better. It does take time, but it's good to at least hop on the road to recovery. Wishing you the best!
DeleteHello I just recently had issue with the Skyla. I had it placed in on april 23, 2014 two day laterbstartedbbleeding. Didnt think any of it so wasnt really concerned at this point until the follwing week. Later i develop sever lower pain in my right pelvic area and ovrian with numness all down my right leg to my feet leading me to seeking medical attention . I had the skyla removed four days after the pain first occured an im still experiencing pain. It is now may 7 2014 and my obgyn are have done many exam an still say they can not figure out whats going on. I not happy with this at all my dont jnow where to turn. No answer from anyone and yet I still suffer. Melissa D. NY
ReplyDeleteHi Melissa,
DeleteI'm sorry you've had to deal with that. The numbness is concerning. I never experienced that myself, but the best advice I can give is to not give up on getting answers. If you haven't already, you should see your practitioner and get the appropriate referrals. If one doctor doesn't have answers, continue on to the next. You are your biggest advocate and your improved health and quality of life depend on that. Best of luck to you!
Fist off Sjorgens syndrome is completely separate from mirena or any other iud. Two find me what STUDY says silicone causes autoimmune problems. For instance silicone breast implants are.found to have no effects on the immune system, which is much mire silicone than an iud. You had blood clotting problems which led to other problems, a part of a risk you take...
ReplyDeleteMy (edits) and [responses] to your comment:
DeleteYou wrote: "Fi( r )st off(,) (Sjogren's) syndrome is completely separate from Mirena or any other (IUD)."
[Response: Incorrect. Women who use Mirena, especially those with existing autoimmune issues, suffer from severe side effects -- their autoimmune issues worsen or in some cases, new autoimmune issues develop. Their stories are throughout the comments in this blog and some sources are cited in other blog posts. Some autoimmune issues are also documented in the clinical trials for Mirena IUD in the adverse side effects section. Read them, please. Autoimmune issues and Mirena IUD seem very much connected -- the #1 reason why I started a petition to fill that huge gap in important knowledge for all women. If you visit the petition, please read through those comments as well: http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting/]
You wrote: "(Second,) find me what STUDY [simmer down, now] says(, "Silicone causes autoimmune problems.") For instance(,) silicone breast implants are () found to have no effects on the immune system, which is much (more) silicone than an (IUD)."
My response:
Study -- http://www.hindawi.com/journals/arthritis/2012/604187/
Study -- http://www.ncbi.nlm.nih.gov/pubmed/10502540
[Also, please refer to another one of my posts, http://learning2walkagain.blogspot.com/2013/08/mirena-iud-lawsuits-why-you-may-not.html, that has direct input on this topic from a major law firm who handled a majority of breast implant cases whose researchers found a connection. Those findings were dismissed by a court-appointed panel during the trial. If you choose to believe there is no connection, I cannot convince you otherwise. However, autoimmune issues related to silicone (breast implants and Mirena IUD) may well be the largest 'coincidence' I've ever known. I wonder how quickly things would have tanked if the connection was proven and hundreds of thousands of women were compensated. There's a reason it's been an ongoing issue. And it's not because women are coming together and making things up. These are real lives. Real experiences. For me, those experiences trump studies that lead to funding and profit.
You wrote: "You had blood clotting problems(,) which led to other problems(…) a part of a risk you take …"
My response: [So, you're an expert on me now? Impressive for a total stranger. Actually, I saw a hematologist who ruled out clotting abnormalities. The temporary clotting I experienced was a direct result of using Mirena IUD. I and others like me who share in these experiences are very aware that using Mirena IUD was a risk we took, and now we are living the consequences of that risk. But that is the whole point of this blog. If I had this knowledge before making that choice, would I have taken the risk? Heck no. You are a woman, correct? Maybe a mom? Would you not want to know all possibilities to make an educated choice to avoid that risk?
In closing, if you read other posts, you would know that I have faced this situation with optimism, hope and an open mind. If you or someone you loved were affected by Mirena, I'm certain your opinions on this matter would change. Congratulations to you for being unaffected. Ignorance really can be bliss. I wouldn't wish the risks on anyone, but I do wish women could be a bit more supportive of each other when it comes to women's health issues -- especially those have haunted women for many decades with no resolution. Adversity has only made me stronger, and despite it all - I chose to make the risk my reward. Have a pleasant day.
Hi Denise! I'm 25 years old. I tried Mirena 3 years ago and 3-4 weeks in I started having a strange throat tightness sensation accompanied by intense anxiety. I was so distressed by the throat tightness that I experienced two panic attacks, which was new for me. I got the IUD out just in case there was a link, and started seeing a therapist because I thought I just had anxiety. The throat tightness eventually subsided and I chalked the whole ordeal up to just anxiety since I was busy working fulltime and taking prerequisite classes for graduate school. However, a month ago I decided to try an IUD again (thinking it was such a shame I had it removed the first time) and had Skyla placed. I was completely surprised when 3-4 weeks in I noticed I was feeling horribly anxious all week and the throat tightness was back! The light bulb went on for me when I almost had a panic attack leaving school, which would have been my first one since the two I mentioned in the wake of Mirena. I got the IUD out days later.
ReplyDeleteThis time around I feel certain that it’s not just anxiety and that there's something strange about how my body reacts to these IUDs. The pill and other hormonal options never agreed with me either (headaches, ravenous appetite, mood changes), but this almost seems like a different reaction because of the throat tightness. I don't know exactly what it is about the IUDs that does this to me, but I know I won't be trying them ever again. Thanks for writing about your experience. I feel self-conscious talking to healthcare providers and even other people about this because so many people can use these contraceptives without problems (and that's great!), but I think there's a population of us that are unfairly dismissed and greatly affected by either the hormones or the materials used in the IUDs. I’m extremely disheartened to be experiencing the throat tightness again because when this happened 3 years ago it took almost a year for that sensation to subside... but I’m optimistic it will go away eventually as it did the first time.
I’m actually currently a physician assistant student with an undergraduate background in psychology, so I know a fair amount about physical medicine and also anxiety disorders. I find this all so strange. I urge people not to judge unless they have experienced something like this or have studied human physiology and pharmacology.
Hello. I would like to try to keep this short but it's been going on for so long now, its difficult.3 years ago I had Skyla placed. Before that I had a positive and somewhat high Ana but nothing else I can think of. Maybe about a year or two after having the Skylar in, I started experiencing symptoms that would lead someone to think autoimmune disorder such as back pain, numbness and pain in wrists hands feet ankles elbows and shoulders which only got worse with time and got worse all of a sudden. Also had low grade fever almost everyday. Still have it in, am getting it out this month because someone thought maybe it had something to do with what I've been going through. Literally the last few months have been hell. In addition to all the symptoms I mentioned, the one I've had from the beginning that has actually gotten worse is extreme fatigue! I've been diagnosed with fibromyalgia and possible sjogrens or scleroderma but after reading some of these posts, I actually how the Skylar has the majority to do with it because at least then I can get an answer and hording some relief! This is the worst pain and feelings I've ever felt and would never wish to see anyone have to go through it. Good luck all and God bless.
ReplyDelete