Review: could Mirena cause Endometriosis?
Summary: Endometriosis is found among people who take Mirena, especially for people who are female, 20-29 old, have been taking the drug for 1 - 6 months, also take medication Albuterol, and have Birth control.
We study 62,602 people who have side effects while taking Mirena from FDA and social media. Among them, 90 have Endometriosis. Find out below who they are, when they have Endometriosis and more.
You are not alone: join a mobile support group for people who take Mirena and have Endometriosis >>>
Mirena has active ingredients of levonorgestrel. It is often used in birth control. (latest outcomes from 62,955 Mirena users)
Endometriosis (appearance of endometrial tissue outside the uterus and causing pelvic pain) has been reported by people with multiple sclerosis, birth control, rheumatoid arthritis, pain, osteoporosis. (latest reports from 5,167 Endometriosis patients)
On Feb, 11, 2015: 62,587 people reported to have side effects when taking Mirena. Among them, 90 people (0.14%) have Endometriosis.
Time on Mirena when people have Endometriosis * :
|< 1 month||1 - 6 months||6 - 12 months||1 - 2 years||2 - 5 years||5 - 10 years||10+ years |
Age of people who have Endometriosis when taking Mirena * :
Severity of Endometriosis when taking Mirena ** :
How people recovered from Endometriosis ** :
Top conditions involved for these people * :
- Contraception (45 people, 50.00%)
- Menorrhagia (14 people, 15.56%)
- Endometriosis (12 people, 13.33%)
- Anxiety disorder (4 people, 4.44%)
- Prophylaxis (3 people, 3.33%)
Top co-used drugs for these people * :
- Albuterol (4 people, 4.44%)
- Yasmin (4 people, 4.44%)
- Alprazolam sr (4 people, 4.44%)
- Seasonique (2 people, 2.22%)
- Nsaid's (2 people, 2.22%)
* Approximation only. Some reports may have incomplete information.
** Reports from social media are used.
Comments for this study:
missdanamarie09 (3 months ago):
I agree I have had endometriosis for years and also I was told the mirena is the best birth control for women with endometriosis ...
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MommaA (4 months ago):
I had no problems with pain until 3 months after having the mirena inserted. I had it taken out and 2 months later I was on my knees in pain. Was taken to the hospital and found out I had a huge cyst. After 3 weeks of the cyst not dissolving I was told I needed surgery. When they did the surgery they found that I had stage 3 endo. My dr told me that there was no way possible that I would have gotten pregnant a 2 years before with this. I had the mirena put in a month after my child was born and never had any cyst or any other kind of pain. I would swear on my life that it was the mirena. Before the commercials and looking online I said it and now reading this I know.
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Shel dan (5 months ago):
42 year old woman that had heavy periods all my life so eventually was advised to have mirena fitted , was fully checked out under a general before. Four years later had it removed because I felt something was not right - it was removed painful due to being in wrong place - insisted on a scan - diagnosed with large 9 cm ovarian cyst . Had it removed along with ovary and they discovered I had endemetriosis which was not there before the mirena coil - this caused the cyst. I am three weeks post op and still having cramps . I also know the mirena caused this - never again.
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stacie (5 months ago):
Sounds like your uneducated endogirl. These stories are true and you are not "born" with endometriosis!
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beba411 (6 months ago):
Hey everyone, so sorry to hear about all these mirena/endo complications :( My story is actually the opposite. So here's my story, I am 27yrs old, I have a 7yr old daughter after giving birth I went on the copper) paragard IUD (had it for about 6 yrs). I suffered severe pain that I would need toradol injections to ease the pain with my periods. So last year, I had hernia repair surgery, during the surgery the doctor's discovered I had endometriosis. Some of the tissue was removed during the surgery. The discovery of Endo, explained the severe pain I would have. I would have pain throughout the month, pain during sex, pain after sex, pain during ovulation, and ofcourse crippling pain during my period. I would also have long and heavy periods. After discussing my options with my Gyno, we came up with the solution of removing the paragard IUD(no hormones) and replacing it with the Mirena IUD which has hormones. So finally they removed the paragard and placed the mirena - all in one day. The procedure was pretty fast, and the only part i found painful, was the actual 2 second insertion. After the procedure I had mild cramps. Compared to my usual pain caused by Endo. I had the mirena put in about 3 weeks ago. From the day after the procedure up to today's date I have NO PAIN!!!! No pain after sex, No pain during sex, No pain during ovulation!!!!!, by now without Mirena, I would've experienced pain on a daily basis....I have not gotten my next period yet, so I dont know what type of pain, if any, I would experience. I am still spotting, but my Gyno says that that is normal for the first 3-6months. The way I see it, a little spotting is way better than putting up with heavy bleeding and pain :) Thumbs Up to the Mirena IUD...So far so good!!!! I am so much happier, especially because I dont have to endure that Endo pain. And FYI - I usually handle pain very well, so you can only imagine how severe the pain from Endo was affecting me.
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shell (7 months ago):
I am 28 and was diagnosed with endometriosis in 2010; two years after having the Mirena IUD removed through laproscopic surgery. Why the surgery you ask? Two weeks after the IUD was inserted it punctured through my uterus. I was very nervous about all of the side effects to the Mirena so i checked for the string daily and one day they just weren't there. I went to the Dr. and had an X-ray revealing the IUD was outside the uterus and somewhere by the intestines. Because of its placement and position i needed to have emergency surgery. They were afraid it would puncture my intestines and cause further problems. So with two children and husband at home i went in for surgery. All went well and I recovered as expected. I thought that was it, all good now. WRONG! Over the next two years I had more than normal periods, with more bleeding, more pain, and lasting 2-3 days longer. Pain with intercourse was frequent and I eventually developed cysts. At one time there was a rather large chocolate cyst that needed to be removed. This meant back in for surgery. After this surgery they told me they got the cyst but had to take that ovary and tube as well because it was too damaged. Then the even worse news.....you have stage 3 endometriosis. I've been dealing ok with this now, they removed as much as safely possible but I just want everyone to know I never had any kind of reproductive issue ever. No pain, at least not more than normal, and never had endometriosis before this. So yes I do blame the Mirena IUD and wish I would have been less naive and not said, "this won't happen to me."
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Missesllj (1 year ago):
I am 21 and I had my IUD put in in July of 2012 and had problems pop up after. I was getting extremely bad cramps that would take me to the ground sex became unbearable and the pain made me so sick I couldn't eat anymore. Finally went to the doctor and the ultrasound showed I had 8 ovarian cysts so I was put on meds for a month and went back with little relief they then ordered a laparoscopy which showed endometriosis keep in mind I had never had an ovarian cyst before getting the mirena nor any problems in that area. I was told that it was genetic blah blah..no it's not I have no family history of this I've done my family research. I think it's odd how I've read hundreds of posts of women being diagnosed with endometriosis after having a mirena put in. And for endogirl maybe you should do your research there is ingredients in medication and lots of other products (deodorant being one) that cause something called reproductive toxicity which is a cause of endometriosis. There's a lot more to endometriosis than are in the books so like I said do your research before you tell these people they are wrong.
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samantha (2 years ago):
hey i had the IUD back in 2008, my dr said the first one fell out an they put a second one in an i had problems with that. had it taking out in 2009 an was told that it was put in wrong an me an my husband cant get pregant right now an we have been trying for the past 4 year. so i think the IUD has caused problems with me.
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endogirl (2 years ago):
For those with endo...Mirena DID NOT cause it. You were probably born with it. Also medications cannot cause endometriosis. Please, for yourself and others, do some research and educate yourselves! There are plenty of books on endo. I get very tired of reading misrepresentations of endometriosis and what causes it...this is why it is not taken seriously.
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brittany (2 years ago):
I had the mirena about 4 years ago and had it in for about 4 months and started to have very bad pelvic pains, i had it taken out and 2 months later i was told that i have endo... this is very disappointing for me cuz i was on 19 at the time. my husband and i have been trying to have a baby since my iud was taken out... and still no luck.. does anyone else feel it was the mirena that caused the endo? also visit baddrug.com and the mirena iud is listed on there... all the symptons they talk about are symtpons of the endo...
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Carrie (28 yrs) (2 years ago):
I really wish you the best. I struggled just trying to get the diagnosis for over a year. I will someday have endo again, it's bound to happen. For now though, it seems to be at bay. I've been put on Lo Estrin 24 to help control it from coming back, if you can remember to take a pill everyday I would suggest you go that route. Mirena was great for the simplicity of not having to take something everyday, but not worth the pain everyday. If you can, it would be better to try to get pregnant sooner rather than later, if the endo gets too overwhelming for your system your chances of naturally getting pregnant will decline rapidly. Best of luck to you!
Also, I've heard there is a suit against the manufacturers of Mirena due to their not being fully honest about side effects. I'm thinking of looking into it myself.
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Trista (2 years ago):
When I had the lap surgery the Dr. removed the IUD at that time since I was coming near the five year mark. He recommended to have a new one fitted. The second Mirena I did fine with but the treatments are killing me ( not literally). I really do want to get pregnant but right now in at this time, financially isn't the best. I have read up on endo and I did find that getting pregnant is also the best option for it. I'm talking with my Dr. today about possibly removing the Mirena since this will also be my last treatment for the Lupron Depot.
I'm glad to hear that you haven't had any endo reoccurring. I'll keep you updated with what the Dr. says and how things go.
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Carrie (2 years ago):
I also used Mirena and about 3 years after having it inserted had to undergo laproscopic surgery to remove the endo. I had a very rough start with the Mirena, for several months I had uncontrolled bleeding and extremely heavy periods. My doctor, (who by the way was the best!)requested I have the Mirena removed and then he do the surgery. Told me it was "textbook" and then gave me several options to treat my endo after the surgery. Including the time consuming Lupo Depron. The best option in his opinion was to try to get pregnant, which was a plan I had anyways. I became pregnant and have yet to have any issues with endo. I've been endo free for almost three years now and have a handsome little boy. I will never go back to Mirena. It was a total nightmare.
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Trista (2 years ago):
I've always had heavy bleeding until I got the mirena. I was fine for years. Then the last two and a half years of being on the Mirena, I started having extreme pelvic pain. My GYN did a laparoscopy diagnostic and come to find out I have endometriosis. Could the Mirena have caused the endometriosis? I've never had endometriosis and I'm only 27. My husband and I would like to have a kid but we don't want to try since I'm going through treatments and those treatments are a pain to deal with. I'm having severe mood swings, depression ( which I already have but has worsened ), migraines, forgetfulness, and massive weight gain, not including extreme cravings. I had the surgery in April of this year and a new Mirena put in at that time. That's when everything started to get worse. I still have some pelvic pain now that im also on a ten day estrogen tabs for when i get my monthly injection. Im worried that the Mirena caused that endometriosis and i might never be able to get pregnant.
I was having the signs of bei pregnant with feel nausious by the smell and site of food for over a week. I was tested twice and both came out negative. Please help me in finding out if the Mirena is the cause of this.
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Do you have Endometriosis while taking Mirena?
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- How do i at least try to get the psychiatrist doing my follow up assessment to consider the possibility that the mirena iud was the cause of the acute psychosis i experienced?
I had a Mirena IUD inserted on December 9th. Insertion was fine (but I think I have a pretty high tolerance for pain); but things started going downhill fast. On December 15th I had a blackout drunken episode and in January I had two puffs of a marijuna joint and believe I went briefly Psycotic. I've tried marijuna at most maybe 10 times in my life and aside from once in Amsterdam over 10-years ago (where I likely had more than I should have); I get nothing out of it, don't see what the point is (aside from the possibility maybe I'll realize what all the fuss is about and I might eventually find it relaxing? Thus the ~9 other lifetime attemts.
I just attributed both of these events to bad behaviour and too much alcohol (blackout drunkeness is not new to me, nor are mental health issues). But things have been very stressful in my life, as owing to my personality and upbrining I am just an anxious person and I have some stress management issues. I like to think this is relatively normal human behavior and not means for locking me up and lecturing me for getting someone to buy me a $10 phone card when the call was worth over $100 and I likely make more money than any of the nurses that are working in the psych ward. But alas I have been labelled bi-polar and someone with mental healt issues so I must be both (a) an excessive spender and financially irresponsible and (b) paranoid and dellusional when I believe I have a well paying job (sorry small rant break...)
Anyway starting ~early-mid January I started waking up really early. Not a big deal for a few weeks and I am generally a 'bad' sleeper but generally that manifests itself in having a hard time falling asleep, not staying asleep until the morning. I kept waking up earlier and earlier and sleeping less each night, this early waking up (at first 5am, then 4am and in the last few days before I was locked up, more like midnight after ~1 hr of sleep) happened to a much lesser extreme in 2011 with my first real noticable experience with 'elevated states' of mental health; it was terrifying then because I didn't understand if I was going crazy or just making stuff up in my head (to get attention? I don't know, but I don't have the most consience ingrained 3-meals/day eating habbits at the best of times and after long enough with no sleep I no longer feel hungry and I have to consciencely remember that I should eat and I think I've gone days without food in these states. Eventually in 2011 after too long with not enough sleep (and feeling wired, but not generally exhausted) and after consulation with various phone crisis lines I took myself into the ER to get checked out. I came with a binder of notes regarding my mental health history (mostly self observed and not in my medical files anywhere except for the 2008 ER visit and subsequent 'mild depression' diagnosis) and they were great because they listened to me and did not discount everything I was saying just because I have mental health issues. They also were not willing to provide any official diagnosis, even after a number of follow up sessions. I also very much appreciated this because I don't believe there is a whole lot of value to mental health diagnosis aside from necessairy critical assessments and short term action plans; however I don't know (or don't believe owing to my experiences and general 'normailized' cynical outlook on life?)
I was referred elsewhere for official assessment and subsequently my diagnosis of mild depression and drug regime of antidepressants changed to a bi-polar II dignosis coupled by a doctor who provided 'drug therapy' in the form of lithium and some other mood booster; regular blood tests and monthly lectures wrt if I was aware smoking was an unhealthy activity (yes I have mental health issues, but that does not mean I am stupid nor illeterate; I believe the knowledge that smoking is not healthy has been generally widly accepted as truth long before I was born. i don't actually smoke becuase I think it's the healthiest thing I could ever do for myself!!!). I was either told (or it was just the message I received from the experience?) that I basically had to be on lithium for life, there was no better alternative. This doctor diagnosed me based on the ER medical records; he diagnosed me without even ever talking to me and he never bothered to consider any other options and/or assessments. I am bi-polar II, I am no longer normal or human or really a valuable memeber of society, I need to be drugged so I don't become even more of a problem to society.
I don't think lithium ever did anything for me, I don't think it did anything to me aside from confusing me and allowing me not to have any confidence in myself and my own ability to manage my health or that the meditation/sun lamp therapy/CBT and other various techniques I started were of any value. I do believe that the antidepressants helped me; but I'm not sure if it was the actual drug or just the placebo effect that gave me hope and allowed me to pull through a 9-month period that made me believe that I really wasn't a valuable memeber of society. But if that's the message I have I don't see why I would stick around in society and waste everybody's time just to be a worthless druggie. I don't see why it's such a horrific thing that I've done, smoking pot ~10 times in my life and using alcohol and ciggarettes to self medicate; these are terrible things that I've done I should stop all of this and become a worthless, lesser version of myself and a prescription-druggie. If it comes in a bottle at the drug store, then it's definitly 'good' drugs?
Anyway, I was definitly not in a good place mentally but I stayed at home riding it out (using non-mental health help lines to benchmark my physical condition; which I've given some stress with no sleeping and little eating and generally just being stressed out). I've been making decisions on which is the best of all my bad options with a timeframe that kept shrinking (e.g. warm bath is good because it calms me down, but it's bad because heat is problematic and makes the rashes worse which will add at least a little anxiety for a few hours after the bath; wine makes me a little less anxious so I'll drink it when in this state; but I can't afford not to be aware so I can't get drunk so I drink it slowly, maybe I'll have a small buzz on, maybe a little drunk enough to allow myself to go to bed and help me fall asleep - yes, not ideal but how is this better than being on the drugs they kept feeding me in the psych ward that after the first (maybe second?) night that they did help me sleep at night I felt nasuated, confused, dull and stupid? Why is it ok for other people to drink way more than me and have worse hangovers for the next day but I should get the message that I should never drink alcohol but I should always feel worse than horribly hungover so I don't ever cry, snap at someone too loudly again because I might hurt someone's feelings?
I was planning to go to the ER if that's what my friends and family doctor wanted me to do, owing to my state. I already know I can manage this better and I already know at that point none of the 'professional's' are likely to believe anything I say so I doubt anyone will pay heed to my suggestions that this IUD had any effect? I was admitted to the psych ward but unfortunatly my timing was terrible - it was march break, a lot of the psychiatrists were off skiing so no one could give me any clear indication of when, if ever I would be assessed. I saw the last 30 years flash before my eyes and I can see all of the terrible ways I've been treating myself, I also now believe I was likely sexually assulted by my peditrition (which might explain some of my angst wrt doctors and hospitals and the terror of being locked up in one?) but they told me I was not a good candidate for one on one therapy. I'm posting this annonynously but it's not really something I want to start looking at in detail in a group therapy setting, is that crazy? I'm worried I will be given yet another diagnosis and told I need to take drugs; which will likely make my short term disability claim be denied (as I don't intend to comply with this action plan), and I can't find much on the internet aside from personal experiences individuals have posted wrt the Mirena IUD and psyhcosis so I can't imagine the phychatrist will be interested in listening to my opinion.
Do I need to go back to school for 8-years and get a PhD in psychatry before anyone will believe I am 'qualified' to assess what I know of myself, given that I am the only one who might have a hope of understanding exactly what has happened in the last 30+ years? Can anyone help me in my fight to be myself rather than a prescription-druggie duller and much less interested version of myself that I know I don't like?
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My face and shoulders started acne and hurts what can i do to treat them, i have the mirena inserted 2 months ago and does it go away in time.
More questions for: Mirena, Endometriosis
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My rheumatologist switched my biologic psoriatic arthritis medicine from Humira to Stelara 9 months ago. My other choice was to add methotrexate to Humira, which I have taken before and didn't want to do because of the fatigue and possible recurrence of elevated liver enzymes. Within a month I had heavy uterine bleeding 3 times within one month. As a pharmacist I was concerned about this strange side effect and my gynecologist agreed with my concerns that I may have migrated endometriosis as well as worsening symptoms of uterine endometriosis originally diagnosed in 2000. I've had psoriasis since childhood beginning in the mid 1970s. Arthritis was diagnosed shortly after I completed endometriosis treatment in in 2001. I have reported the adverse event to Abbvie and encourage anyone else to do so. For those of us in this unfortunate group, the company needs to study WHY Stelara feeds endometriosis (does it elevate estrogen levels?) and why it causes a premenopausal woman to have vaginal bleeding/period and/or bleeding at migration sites within 3 days of an injection. I can only imagine the disastrous consequences for any woman on Stelara who has estrogen receptor positive breast cancer history in her family. This side effect is on par as being as serious as those seen with Thalidomide.
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Okay, I will get one thing straight, I DO love my IUD. Luckily I'm one of the ones where it doesn't fall out of me or migrate. It stays put and does it's job.
I know there have been endless reports of symptoms. I will admit, I have a few of the more common ones, such as false pregnancy symptoms, or cysts, but recently, a new symptom has developed.
I've had my IUD for just a little over a year now and a few months ago, I had a horrible paranoia and anxiety attack. Let me give some examples in what I mean.
When I'm feeling "normal", I don't really care what my S.O does in his spare time because I DO trust him and I know deep down that he's faithful. Every other month, it seems that my hormones act up and I go into panic fits when bad thoughts come to mind and I misinterpret almost everything he says and think that he's now suddenly against me and I freak out.
I know many people are probably thinking that I'm just having trust issues, I'm really not, let me explain more. He can say the same things one day, and I wouldn't care, and the week (yes, my paranoia seems to last a week or two) I'm anxious, he can say the same thing and I'll panic to the point of passing out. And it's not just him, this goes for my friends, or coworkers. I begin to think that they're all changing when in reality, it's me that's acting different. Again, it's not immature trust issues, I got bad paranoia. I couldn't eat, I couldn't focus. I only focused on the bad and made up thoughts in my head of being left by him or betrayed by my friends, I would get very dizzy and shaky with my muscles aching. My pulse would be calm for a bit and then it would shoot back up as I got panic attacks.
Luckily my S.O is patient with me and helps me through it, but the first time this happened, it scared me beyond belief. After my paranoia stopped, I reflected on that week and thought "My God, did I seriously freak out over that??" it seems to happen a bit before my period or after.
Let me also say that I've been on the pill for years and none of this happened. It all started around a year of having Mirena and I've looked up that paranoia is a VERY possible side effect. I will say it HAS frustrated me because every time it stirs up a paranoia episode, I feel like a child being backed into a corner with my anxiety. Again, I still know and trust my S.O and friends, but the paranoia fogs my mind and hijacks my emotions to where a simple text that usually means nothing to me, makes me panic, "Omg!! omg!! Why are they texting them?! Why did they say that to me?!! It's not normal!!". If my real personality could jump out during the episodes, I would be smacking myself silly.
I use Mirena as a birth control, but if this keeps up, I may abandon it ASAP but I have to find another solution, so whenever my S.O is able to get a vasectomy, I'm probably getting this IUD removed. Again, it does a good job, but it's getting to the point where these horrible panic attacks aren't worth it.
I'd like to know if anyone else has had similar paranoia or anxiety attacks when having Mirena.
- Diagnosed with postural orthostatic tachycardia syndrome after mirena
After getting the Mirena put in, I got really sick. I went home and got super dizzy, nauseous, and tired. I felt so sick and could barely function. I called the doctors office and they said it couldn't be from the Mirena. She said that I must have the flu. Well, I kept it in for a little while longer. I then started losing my hair. I went back into my doctors office because they thought I was experiencing the symptoms for the Mirena going through my uterine wall. The ultra sound was fine. She reassured me that the Mirena could not be the cause of my complications. So, a week a later I went to another doctor to have the Mirena taken out.
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