tag:blogger.com,1999:blog-6757075339059623119.comments2023-12-04T08:10:35.431-05:00Learning 2 Walk AgainUnknownnoreply@blogger.comBlogger225125tag:blogger.com,1999:blog-6757075339059623119.post-31992416776100907492017-07-05T22:50:31.400-04:002017-07-05T22:50:31.400-04:00Hello. I would like to try to keep this short but ...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.Trixismamahttps://www.blogger.com/profile/15276118393474410088noreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-53553044327023604212017-02-06T09:51:10.627-05:002017-02-06T09:51:10.627-05:00Everything shared here I have experienced in some ...Everything shared here I have experienced in some form or another. I am 42. I had my Mirena inserted 2 years ago. <br /><br />I have been dealing with bursitis in my right shoulder for 1.5 years now. I hurt my shoulder by paddle boarding where I subluxed my shoulder and after that day nothing was the same. Therapy, chiro, Cortisol... .nothing has helped it. Now its my hips (more my left than right). I have seen physiotherapists, sport therapists, my doctor and am now heading to a Sports Doctor this afternoon to explore what is up with my shoulder and why my hips are in pain and don't move side to side anymore. And why every time I get up from a sitting position my hips radiate pain. I have no range of motion in my hips if I or my MT tries to pull/fold my leg over the other. My hips just lock. And my feet and ankles are tight too. <br /><br />This all became a concern yesterday when I had a phone interview with an Ostepoath. She was asking about my periods and I explained I have Mirena. Her reaction was odd so I got online today and found this site. I am shocked, irritated, surprised... you name it. I am getting this thing removed asap. Lets see what happens. Wishing everyone else a positive recoveryLeannenoreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-17627321403959430372016-11-14T20:02:49.315-05:002016-11-14T20:02:49.315-05:00Hi Denise! I'm 25 years old. I tried Mirena 3 ...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. <br />This 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.<br />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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-83503338251410598072016-10-28T08:47:11.616-04:002016-10-28T08:47:11.616-04:00so those of you who have had it out has the pain i...so those of you who have had it out has the pain in hip / legs gone ?? got mine out today hoping to god the pain will go. Anonymoushttps://www.blogger.com/profile/15171801858900284047noreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-55823913915202410402016-10-20T20:28:49.894-04:002016-10-20T20:28:49.894-04:00You are so brave and strong! God bless you!!!! You...You are so brave and strong! God bless you!!!! You are not being selfish, by doing this you are giving your children a better version of you in that you will have more mobility to do things with them! I admire you for your strength and courage! Carolinenoreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-51698599453476844452016-10-04T12:48:43.396-04:002016-10-04T12:48:43.396-04:00Hi I've been suffering from the disease and no...Hi I've been suffering from the disease and not limping now. After 7yrs of enduarance I took the 'unscientific' Ayurvedic treatment in 2014 and I've stopped taking any sort of medicines.After 2yrs my mobility and strength have improved a lot. I'm not net savvy and busy in my business in Mumbai, just tried to spread the message that 'non-invasive' methods are available.<br />Although majority of ayurvedic doctors are cheats in India , i got the perfect one. so far so good.kunahttps://www.blogger.com/profile/13732988458783684016noreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-60212823248129504232016-08-24T13:52:48.430-04:002016-08-24T13:52:48.430-04:00Hi, so my name is Cassie. I am 27. I got mirena in...Hi, so my name is Cassie. I am 27. I got mirena inserted when I was 22. I have never put two and two together, until now. I was diagnosed with Aseptic Necrosis of the hips, about 2 years ago. Before mirena, I was a semi- professional athlete, I danced, ran, did photography, and was a very dedicated mom to two beautiful girls and a happy girlfriend who would do anything for the love of her life. That all changed one night, after moving into our new home. I was sleeping on my Right side and rolled over to my left side only to woken up with the most horrible pain in my right hip down. I felt as if someone was pulling my leg so hard and it was out of place. I could barely breathe, and did everything I could to wake up my boyfriend. I told him something was wrong. We went to ER where they proceeded to tell me I had pulled a muscle and had inflammation in my hip. Gave me medicine and i was on my way. It happened again 3 times after and the last time the pain stayed. I couldn't get out of bed. I fought and fought the tell the doctors something was wrong. How can someone as healthy as me, just get so sick and fragile so quickly? ? Luckily a specialist saw the x-ray & quickly suggested I get an MRI. that confirmed it. I went to multiple orthopedic specialist and no one would do the surgery. The only solution to rid this issue is to have total hip replacement surgery. I had finally found a surgeon who would do the surgery. I had my first surgery in June 2016, & will be having my other side done,September 2016. The impact this has made on my life had changed me forever. I went from this perfectly happy young lady, to a mean, lazy bitch. It had taken away my life, my independence, everything. All the simple tasks of everyday life are too much, and they seem much harder. But thanks to this surgeon, my life is becoming better. Not to mention the pain medication it takes to control this type of pain and the affects it leaves on your body. I will be a voice to the people I know, and will tell them to stay away from this product! ! Cassie King<br />cassieking10@gmail.com Anonymoushttps://www.blogger.com/profile/07224296084266010564noreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-10081580430171283462016-08-10T10:51:41.383-04:002016-08-10T10:51:41.383-04:00There are many published papers now a days - which...There are many published papers now a days - which shows that non- surgical management of AVN is now possibleavn.doctorhttps://www.blogger.com/profile/09131224348275262205noreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-19464370271849628022016-08-10T10:48:12.412-04:002016-08-10T10:48:12.412-04:00HI,
There is a clinic in MUMBAI, INDIA which spec...HI, <br />There is a clinic in MUMBAI, INDIA which specialises in treating avascular necrosis of hips. Hundreds of patients are cured non- surgically - just medicines - thats allavn.doctorhttps://www.blogger.com/profile/09131224348275262205noreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-46789238119863212492016-04-01T13:46:30.806-04:002016-04-01T13:46:30.806-04:00This is nuts! I think this is what I'm current...This is nuts! I think this is what I'm currently experiencing. Had the Mirena inserted about 6 months ago and it's been nothing but hell. First bloating and horrible cramping. Now hip, knee and shoulder pain. I have an appointment to get it out at the end of the month and the appointment can't come soon enough.Anonymoushttps://www.blogger.com/profile/12615480022956872469noreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-7604491644180205562016-03-29T11:11:26.281-04:002016-03-29T11:11:26.281-04:00Hi,
Avn of the femur can be cured with medication...Hi, <br />Avn of the femur can be cured with medications or atleast the need for surgery can be deferred till atleast 10-12 years with only medications which are easy to take.<br />Its really astonishing to see patients without pain and avoiding surgeries like hip replacements . Anonymoushttps://www.blogger.com/profile/04126301189669061824noreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-90953852258925257022016-02-07T20:12:53.953-05:002016-02-07T20:12:53.953-05:00I can't believe what I'm reading. I have h...I can't believe what I'm reading. I have had mirena IUD twice, for a total of 8 years. I had right hip pain from the start, mood swings, low libido, stomach pain and bloating, weight loss, joint pain, infections. Now I find out I have osteoarthritis in both hips, lower back and I didn't know mirena could cause osteoarthritis till today. Years of deteriorating health and dr never tell you it causes so many problems. Im seeing a physiotherapist now, my left shoulder also has calcification and feet and wrists crack on walking or movement. Is there any way of getting justice? I was also healthy before using this device. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-39634448728548794192016-01-19T20:49:36.419-05:002016-01-19T20:49:36.419-05:00I definitely experienced brain fog with Mirena and...I definitely experienced brain fog with Mirena and I don't have kids. It got worse, although I still have some. It's now better. I got migraines anyway. The pain you experienced, yes. I hope you got it removed; I finally did but I still got the hip pain. It was nice to not take a pill but that's about all I can say for it! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-55264754183511106212015-11-11T19:59:35.397-05:002015-11-11T19:59:35.397-05:00my 14yr old has idiopathic avascular necrosis. mor...my 14yr old has idiopathic avascular necrosis. more than 50% of her hip has died within a year and half. the 1st orthopedic doctor said she was surprised that it has not collapsed yet. in the begining of sept a 3rd opinion was recommended by the doctor in syracuse NY he checked with the chop hospital in PA. mid-october i was told that PA has nothing to offer. i am looking for someone that specializes in cases like her's that could offer her pain relief and better quality of her teenage years or at least a website/blog something that can assist me in finding someone that will help before her hip collapses. we live in upstate NY. i am willing to travel any distance if necessary. <br />thank you in advance,<br />Monica RosadoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-4922591919881652442015-11-11T19:58:33.930-05:002015-11-11T19:58:33.930-05:00my 14yr old has idiopathic avascular necrosis. mor...my 14yr old has idiopathic avascular necrosis. more than 50% of her hip has died within a year and half. the 1st orthopedic doctor said she was surprised that it has not collapsed yet. in the begining of sept a 3rd opinion was recommended by the doctor in syracuse NY he checked with the chop hospital in PA. mid-october i was told that PA has nothing to offer. i am looking for someone that specializes in cases like her's that could offer her pain relief and better quality of her teenage years or at least a website/blog something that can assist me in finding someone that will help before her hip collapses. we live in upstate NY. i am willing to travel any distance if necessary. <br />thank you in advance,<br />Monica RosadoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-87605507328303225132015-09-12T22:46:59.619-04:002015-09-12T22:46:59.619-04:00I had my first Mirena inserted in 2011 and started...I had my first Mirena inserted in 2011 and started having hip pain a few months later. I went to my doctor several types. She gave me meds, shots, patches, etc. No relief. I did PT and saw a chiropractor and no relief. I finally concluded the only thing to change was the IUD and removed it myself. It took a few months and it got better. Fast forward 2015 and my Dr. wanted me to try the Mirena again to keep cysts under control. So I did. It took 5 months for my periods to stop and guess what started up again? Hip pain!!!! This is crazy!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-73374173513037797682015-09-10T16:05:00.079-04:002015-09-10T16:05:00.079-04:00Hi Melissa,
I'm sorry you've had to deal w...Hi Melissa,<br />I'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!Denisehttps://www.blogger.com/profile/07037821915770816003noreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-28455688641008566582015-09-10T15:53:15.295-04:002015-09-10T15:53:15.295-04:00My (edits) and [responses] to your comment:
You w...My (edits) and [responses] to your comment:<br /><br />You wrote: "Fi( r )st off(,) (Sjogren's) syndrome is completely separate from Mirena or any other (IUD)." <br /><br />[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/]<br /><br />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)."<br /><br />My response:<br />Study -- http://www.hindawi.com/journals/arthritis/2012/604187/ <br />Study -- http://www.ncbi.nlm.nih.gov/pubmed/10502540<br />[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. <br /><br />You wrote: "You had blood clotting problems(,) which led to other problems(…) a part of a risk you take …"<br /><br />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?<br /><br />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. <br /><br /><br />Denisehttps://www.blogger.com/profile/07037821915770816003noreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-23598836764240597392015-09-10T11:34:50.489-04:002015-09-10T11:34:50.489-04:00Fist off Sjorgens syndrome is completely separate ...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...Anonymoushttps://www.blogger.com/profile/12466838501416824707noreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-17998231084651099672015-08-15T21:35:35.483-04:002015-08-15T21:35:35.483-04:00Denise, my name is also Denise. I've had the ...Denise, my name is also Denise. I've had the mirena in since January, and started having joint pain in March. I'm being worked up currently by the rheumatologist, but have not come back positive with anything. I have requested silicone poisoning tests from my doctor, and am awaiting a response. If I do have an autoimmune, it's most likely sjogren's, or possibly lupus. I have more symptoms of sjogrens. Any recommendations for other testing. I have not had the mirena removed yet because then I will need a hysterectomy. But if it's the cause of this pain it has to go.....Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-18264928082815894532015-06-02T20:52:41.106-04:002015-06-02T20:52:41.106-04:00i have had the merina removed after 5 yrs of hell ...i have had the merina removed after 5 yrs of hell with a billion symptoms mentioned from other sites.. i went through sharp uterus pains and cramping(no periods while on merina other then light spotting AFTER the 6 month mark)..hair loss. extremely tired all the time. about 50 LBs weight gain over the 5 yrs but the last 2 months it was in seemed like when the most came on with extreme bloating i thought i was 7 months pregnant,hair loss, sleepless nights,mood swings,zero libido, night sweats, headaches and list goes on.. i blamed most of it on what i thought was perimenapause.<br /><br /> I am 44 now and 5 ft 7 and 294 lbs as of my last appointment may 30 2105 when i had it removed... Crazy.. I complained to my doc a bout the weight gain and cramping and bloating and also the pain i am suffering with in my hips and knees ..he sent me for ex rays and they came back that i have arthritis in the left knee but he said the right seems to be ok... so this is now day 5 after having iud removed.. i am in a full blown period with clots my knees have swelled(both) with water and im barley able to walk..now remember ex rays showed only problem with the left knee. my hips are constantly throbbing and sleep near impossible without taking pills..<br /><br /> when i had the iud put in 5 years ago 2010 i was in a picture of health.. i had a job i loved that kept me healthy and fit which i also started just before i had the iud implant put in..as the months progressed the pain started hips,lower back, feet, knees... i ended up going in and having an mri done for the back pain .. it came back with osteoarthritis is L4.. this 1 yr after insertion... pain continues and gets worse to the point after 4 yrs i have to leave my job and take a desk job due to pain.. i have now been diagnosed with plantar fascitis/ arthritis nodules on the tendon that runs through arch of your foot on both feet.. this was on may 24/2015 now i am diagnosed with osteoarthritis in left knee as of may 30 2015.. so from the lower back down i have osteoarthritis and darn sure its in both hips as well.. <br /><br />now being at where the merina is and has its placement im very suspicious as to the merina being the cause for these problems.. i have read some that they are starting to look into this as being linked to the merina.. But in the mean time im sick and tired of doctors trying to convince me that there is nothing wrong with me and that its not possible that any of what i went through the last 5 years and that i am going through now is not linked to the merina iud..they look at me and say i need to lose weight.. duh i know that but till these chemicals have left my body its going to be a fight to lose which i willing to do in order to get some frame of health back..before i had the iud put in i had lost 65 lbs and i put every lb back on pretty much and have tried everything to lose it and take it off now with the pains in lower body from arthritis it going to be a real battle.. also to mention arthritis is not genetic trait on either side of my family.. i checked into it.. Please do not put this beast into your bodies look for other methods it will wreck you in the long run.. i am 44 and my body feels like its 80..Anonymoushttps://www.blogger.com/profile/00229041919025371562noreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-65724659860822347622015-04-27T11:54:03.987-04:002015-04-27T11:54:03.987-04:00Great article with lots of helpful information! Di...Great article with lots of helpful information! Did you also know that over 55% of people who receive disability benefits do not have another source of income? Here's an article that has other interesting facts about Social Security Disability. http://www.buzzfeed.com/tracywiseman/9-interesting-facts-about-social-security-disabili-1cyzaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-74458520563449566202014-11-30T21:09:27.249-05:002014-11-30T21:09:27.249-05:00Hello Denise,
I have AVN in both hips, bad arthrit...Hello Denise,<br />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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-60786063791564845272014-11-18T12:05:41.094-05:002014-11-18T12:05:41.094-05:00Hi Denise,
Thank you so much for writing about you...Hi Denise,<br />Thank 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... :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6757075339059623119.post-1823314494848937672014-09-27T20:03:47.540-04:002014-09-27T20:03:47.540-04:00You are such a beautiful writer, and so much of wh...You are such a beautiful writer, and so much of what you have written speaks to me. I am also adopted and have nothing but praise for my 'adoptive parents' ( = mom and dad). I did not think much of being adopted until becoming a parent myself, as well as realizing how hard it is sometimes not knowing my family's medical history. Someday I'd love to find my birth mom just because I realize how hard it must have been for her to give me up, and I know she probably wonders about me. 39 and Hiphttps://www.blogger.com/profile/00834354344479950557noreply@blogger.com