Mirena - What Your Doctor Might Not Tell You

Mirena may appear to be the perfect birth control solution (and for some mamas out there it may very well be). I would urge you to research your options on birth control, ask around and gather personal testimonies – it’s a serious decision and there are very real risks and side effects associated with this medication.


Tight-lipped Patient Information

There is concern out there that patients are not receiving appropriate counseling before using the Mirena device.

Currently there is a FDA petition (click here: Mirena Awareness Petition) urging Bayer to publish more common side effects which are only listed in the physician information not the patient insert. This means that you depend on your doctor to be completely forthright with all of the information prior to usage (if you do not do your own research before hand). 


The patient information for the device contains the following side effects only:

Pelvic Inflammatory Disease, infection, embedment, perforation, discomfort during placement, expulsion, missed menstrual periods, changes in bleeding, ovarian cysts.

The physician information for the device contains the following side effects:

abdominal/pelvic pain, vaginal discharge, nausea, headache, nervousness, vulvovaginitis, dysmerorrhea (cramps), back pain, weight increase, breast pain/tenderness, acne, decreased libido, depressed mood, cervicitis (vaginal infection), hypertension, migraine, vomiting, anemia, dyspareunia (painful intercourse), alopecia (hair loss), eczema, pruritus (itchiness), rash, urticaria (hives), abdominal distension, altered mood, hirsutism (abnormal hair growth), edema (swelling).


Although doctors are instructed by the manufacturer to disclose this information with the patent, they often do not. This is one example of why it is valuable to take the time to learn about medical procedures/interventions/drugs prior to use. 


Levonorgestrel 

If you weren’t already aware, Mirena is a hormonal contraceptive device placed in a woman’s uterus. This T-shaped polyethylene frame contains a steroid reservoir which holds 52 mg of levonorgestrel. Exactly how it works is unknown. [1][2]

Levonorgestrel is released at a rate of approx. 20 mcg per day.

Interestingly, levonorgestrel is also categorized as a pesticide.


Levnorgestrel holds the highest level of concern in Reproductive or Developmental Toxin category.

Per the State of California under the Safe Drinking Water and Toxic Enforcement Act (Proposition 65), Proposition 65 requires the Governor to publish, annually, a list of chemicals known to the state to cause cancer or reproductive toxicity. Lovnorgestrel was added to this list in was proposed to the list in 1986 and was confirmed in May 15th 1998.[4]



Nursing Mamas


Levonorgestrel passes into breast milk and carries the potential to harm a nursing baby.[3]

If you are nursing – opt for something else.



Common Side Effects
(Info taken directly from Mirena website)[5]


Pain, dizziness, bleeding or cramping may occur during placement. If these symptoms do not stop 30 minutes after placement, Mirena may not have been placed correctly.

Mirena may come out by itself. Symptoms of partial or complete expulsion may include bleeding, pain and an increase in menstrual flow.


About 2 out of 10 women stop having periods after 1 year of Mirena use.


Your period becoming irregular and bleeding and spotting between menstrual periods (or heavy bleeding during this time), periods may remain irregular. Pelvic and/or abdominal pain can occur.


A little over 1 out of 10 women using Mirena will develop a cyst on the ovary. Cysts can cause pain and may sometimes require surgery.



Between 5% and 10% of Mirena users may experience:

Headache/Migraine
Acne
Depressed mood
Heavy or prolonged menstrual bleeding


Less than 5% of Mirena users may experience:

Vaginal discharge
Breast pain or tenderness
Nausea
Nervousness
Inflammation of cervix, vulva or vagina
Pelvic pain during your period
Back pain
Weight increase
Decreased sex drive
High blood pressure
Pain during intercourse
Anemia
Unusual hair growth or loss
Skin irritations (such as hives, rash, eczema or itching)
Feeling bloated
Swelling of hands and/or feet
Expulsion



Other Concerns


Long-term effects and congenital anomalies
Some observational data support a small increased risk of masculinization of the external genitalia of the female fetus following exposure to progestins at doses greater than those currently used for oral contraception. Whether these data apply to Mirena is unknown.


Breast Cancer
Women who currently have or have had breast cancer, or have a suspicion of breast cancer, should not use hormonal contraception because breast cancer is a hormone sensitive tumor...



Obviously every individual responds differently to medication. If you or a friend has Mirena and would like to submit a complaint online – click here.




References:

[1] Pharmacists Coffee: Mirena. http://pcm.me/mirena/

[2] Drugs.com – Levonorgestrel. http://www.drugs.com/cdi/levonorgestrel.html#3tq8xwbxpsv5RdST.99

[3]Drugs.com – Plan B  http://www.drugs.com/pro/plan-b.html

[4] Office of Environmental Health Hazard Assessment of California. Proposition 65  http://oehha.ca.gov/prop65/out_of_date/598not.html

[5] Offical Mirena Website: http://mirena-us.com/safety/index.jsp

[6] Drugs.com: Label Changes for Mirena. http://www.drugs.com/labeling-changes/July-2008/mirena-levonorgestrel-releasing-intrauterine-2010.html


38 comments:

  1. Thanks for posting this. There is SO much that the doctors don't tell us about Mirena. I believe that blood clotting is a major issue, which is not discussed enough with patients. You can read about my experience with Mirena here: http://learning2walkagain.blogspot.com/

    Take care!

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  2. Wow. Thanks for all this info. I was always weary of hormonal BC (though I was on the pill for a number of years). I opted for paragaurd, and ended up pregnant. That was one side effect I am quite thankful for! :)

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    1. You're welcome Myn! I'm happy for your 'opps!' :)

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  3. Thanks for posting references with your facts. I am currently in the middle of (hopefully near the end of) my mirena nightmare. The facts are sickening, aren't they?

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  4. I've been having pelvic and groin pain that's intermittently. As well as increased vaginal discharge. I've been to my gynecologist 3 times since January. The last time they diagnosed me with a mild yeast infection. I'm so sick of having problems. I'm prone to vaginal infections and I should've been told this might increase them. Sigh....so tired.

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  5. So tired! My poor babies! Has anyone experienced vision problems?! Also, hair loss andlack of concentration! Is this perminant??! I should have filed against this company, as Yazz had given me seizures! What can I do NOW?

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    1. I'm in the same boat. Mirena was put in Jan of this year and I was bedridden by Aug. I got sick with dizzy spells and passing out in April and they just got worse, till I was unable to work, drive or walk. Doctors never telling me it could be the iud, my sister found my symptoms matched those of mirena a d advised me to have it removed, which I did 6 wks ago. I'm not bedridden any longer but still unable to work or drive. I'm in physical therapy 3 times a wk to regain my balance, I'm training my brain how to walk again. The worst part is Ive lost my job of teaching after 23 yrs. Still unable to work or collect any type of disability because doctors just state I have something wrong with my central nervous system, but don't know what or how its happened. Who is held responsible for this? What is the victim supposed to do?

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  6. I love my mirena, I have never been happier, no periods, no cramps, no decrease in libido, no PMS. Best thing ever.
    I did my research myself before getting mine, all of this information is readily available. I was given a giant booklet listing all of the possible side effects by the doctor, including the scary ones. I don't understand the need for fear-mongering.
    While I sympathize with anyone having problems with birth control (for example, I cannot take the pill), your anecdotal experience is not science. Check the stats, less than 5% suffer from serious complications.

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    1. Appreciative of your reply Nora - unfortunately, the data presented here is not anecdotal. Please review the references at the bottom of the post.

      I agree with you, fear should never be used to force a person's hand in ANY medical intervention - whether that is contraceptive methods, vaccines, labor/birth choices, etc!

      Thanks again for your personal experience : )

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    2. Yes and Amanda included all that information... She is not fear mongering and facts (real facts) were included.

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    3. I too love my mirena! I have had it just over 4 years and have had no problems. Everyone's different and all I can say is in have enjoyed my mirena. It makes my life so easy....

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  7. Just to let you know, you have your dosage conversion wrong.

    1 mcg (microgram) = 0.001mg
    Mirena 20 mcg or 0.02 mg daily
    Plan B 750 mcg or 0.75 mg (each tablet, two taken together equals the dose you posted)

    Overall, I don't think you have fairly represented the Mirena. Of course there are side effects, but there are side effects to having your period too!! Imaging, 10% of women using the Mirena IUD will have an ovarian cyst, but all ovulating women will produce a follicular cyst each month. Some of those twist, some bleed and some need surgical intervention. If only we could stop women from having periods to reduce those complications. Headaches are very common too. Do you really think that 10% is significantly different from the baseline population. Get any ten women in a room and I bet at least one of them had a headache in the last year. Don't forget, the devise is use for 5 years, and all of the common side effects are common in women anyways.

    If anyone getting the Mirena does not know it is a hormonal contraceptive, they either have a very bad doctor or they have their head stuck in the sand! Of course it has hormones, that is why is it effective. Yes it causes some women to stop having their period, which you listed as a side effect - how is that bad. Did you know that it is actually an effective treatment for heavy periods, painful periods and women with abnormal cells in their uterus (not cervix)?

    Women have lots of access to information, including the Mirena website. All of the information you listed is easily available. But you failed to even mention that there are positive benefits beyond the contraceptive role for Mirena. Did you know that often is is prescribed for reasons other than birth control?

    I am not sure what your intent for this post was, but it is sorely lopsided.

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    1. Thank you for your correction! I omitted the one sentence that you reference in this comment.

      The intent of this post is to examine the purposefully lacking information provided to women regarding what Mirena is and what the risks are when using it.

      The PATIENT information for the device contains the following side effects only:

      Pelvic Inflammatory Disease, infection, embedment, perforation, discomfort during placement, expulsion, missed menstrual periods, changes in bleeding, ovarian cysts.

      The PHYSICIAN information for the device contains the following side effects:

      abdominal/pelvic pain, vaginal discharge, nausea, headache, nervousness, vulvovaginitis, dysmerorrhea (cramps), back pain, weight increase, breast pain/tenderness, acne, decreased libido, depressed mood, cervicitis (vaginal infection), hypertension, migraine, vomiting, anemia, dyspareunia (painful intercourse), alopecia (hair loss), eczema, pruritus (itchiness), rash, urticaria (hives), abdominal distension, altered mood, hirsutism (abnormal hair growth), edema (swelling).

      Although doctors are instructed by the manufacturer to disclose this information with the patent, THEY OFTEN DO NOT.

      The risk in your opinion may be small - but every women deserves to make that choice for THEMSELVES.

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    2. Not having a period isn't always a good thing. I never bled on my Mirena and it caused my lining to build up. Then cancer developed in the uterine lining. Finally had a period as soon as it came out.

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    3. I am 50.had mine put in over five year ago for heavy periods.it took near 16month for them to settle down and stopped. Then problems started. Sex drive went . depression came.put on weight. Hair loss. Itching all over my body.mood swings and many more.had my coil taken out 4 days ago and feeling better already but still early days

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  8. I have major swelling of my legs, ankles, and hands only around the time of my period. Never once did I have this problem before having the mirena placed 2 yrs ago. These problems just recently started about 3 months ago and the swelling can become VERY painful. Im on my feet all day at work and its hard wearing any shoes other than flip flops because of how much I swell. Seriously thinking of having it removed.

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    1. Hi did you remove the mirena? Did your symptoms go away if you did?

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  9. Hello everyone. I have the Mirena and experience 8 side effects from the "less than 5%" list.

    This is what I'm most mad about: I was adamant at the doctor that I didn't want a birth control with hormones. The doctor I was at manipulated me into getting the Mirena by completely talking down the Paragard and any other method available. I know "manipulation" is a strong term, but looking back, I see someone in power (who you feel you should trust) making it seem like my best option is to go with hormonal treatment, the one thing I said over and over I didn't want. I never would have gotten the Mirena if my doctor hadn't've made it clear that was what they wanted me to have. Now I wonder if they had a contract with the Mirena company to place it in as many patients as possible.

    Lesson to us ladies? STICK TO YOUR GUNS AND FOLLOW YOUR INSTINCTS. Don't trust doctors to make the best decision for you. This is a hard thing to do because doctors are supposed to know best, but they are also under a lot of pressure to give you drugs.

    If I had the money, I would take the Mirena out, but I'm stuck with it for the time being. I make myself feel better by telling myself that my discomfort and disfigurement is better than an unwanted pregnancy, but how is that good medicine? Hugs to the woman above who described removing it herself.

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    1. Thank you for taking the time to share your story - I deeply appreciate your honesty and willingness to share.

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  10. I had my Mirena inserted in May of this year. For the first couple of months everything was fine. My periods diminished and our was good. But in September, my periods went haywire, as well as my mood, my skin, and my weight. My ob/gyn said it was impossible for the Mirena to make me gain weight, but here I am, 20 pounds heavier. I saw a different doc today who believed everything i said and had no problem taking it out, thank God for that. Im sure that this device works great for some so I'm not trying to knock it, but it was terrible for me. I didn't list all of my side effects but I had almost all of them. I believe I'm one of those who cannot tolerate the hormones as well. I'm going to schedule tubal ligation within the next month and be done with all the worry about birth control. But I'm wondering how long it will take for my body to regulate itself. Anybody have any feedback on that from their own experience? Please share. Thank you!

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  11. I have to pay to have mine removed Friday. Also, I have 9 of the less than 5% list.

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  12. I have had the Mirena IUD in my body for around 1 year and 4 months. I have gained around 40 pounds during this time and have not changed my diet in any way. I also am having issues with trying to lose the weight. I can eat a 1200 calorie day (or less) with working out and still weigh the same. I have battled with depression more than I ever have, I am easy to anger & emotional. I am swelling nonstop. I also have started growing hair on my chin (never had this kind of a issue before). Also have had acne that I never had issues with before. My energy level has gone down so much. I am 34 and as soon as I get off of work and pick my 7 year old up I feel like going home and just passing out. I feel like the worlds worse mom because I just do not have the energy to do anything. Before I had the IUD put in I also was an obsessive cleaner, I know that sounds weird when I say but I have just sat and watched laundry pile up because I was way too exhausted to fold it and put it away.

    Then came all of the test… My GP was so worried because of the insane amount of weight I have gained that he started testing me for anything and everything. Thyroid is perfect, I am not diabetic, my hormones seem to be in check according to blood work, and last but not least I have been tested for Cushing’s Disease (scary). Anyway I am clear on everything. I never thought it could be the Mirena till I started having insane pain and had to go to my OBGYN to see what was wrong. My IUD is in the right place but they found a cyst on one of my ovaries. I stared wondering just what in the heck was going on because I know something is wrong with my body and it is making me even more depressed not knowing what is up. Then I started reading everything I could about my IUD…. OMG the side effects that this thing can cause that they do not tell you when they are trying to sell you on getting it put in. I am having it taken out next week. So so happy and hopeful that this will be the answer.

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  13. I have had the Mirena for approx 3 months. I would first like to say insertion hurt like hell!!!!!!!!! I would rather give birth again. The first month I bled on and off. The second and third month no period at all. That is the only good thing I can say. I have since been experiencing a rash/hives on my sin. From my legs to arms even forhead at times. I can say I am allergic to many things tho, grass, trees, dust mites and I also have oral allergy syndrome. I keep my allergies under control. Therfore I am 90% certain this new rash is from the mirena. The are will hive up and turn red. 30 minutes later its gone. Then it moves to another area.

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  14. Nice information shared here. Thanks for sharing. Abdominal distension in children

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  15. I have had Mirena IUD for almost 4 years.. no problems up until 2 years ago. I have had a cyst, my period 2 times in same month. I have also had several uti that have put me in hospital up to 3 days on iv and antibiotics. I have had weight gain tremendously. Before birth control I was pushing 160 lbs now I am pushing about 230 lbs. I have constant headaches, abdominal pain every now and again. I have had vaginal itching more then I have ever had. I have had pelvic inflammation disease 2 times. I have experience at least 10 of the less than 5% symptoms and all of the 5%-10% symptoms. I am ready have it removed. After 4 years I'm done and want my body to regulate again and hopefully weight will come off. Hopefully my energy level will boost up...right now I have hardly any and want to sleep all the time. I do have to ask "Has many of you had same issues as me?" Do you have any advise on what to do?

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  16. ive had mirena for half a year no and have had no problems. it is a hormonal form of birthcontrol it can do all this but they also may not its really just weher not its for u or not. some ppl r different and need to use something different.

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  17. had the merina just under 2 years. gained 10 kgs , tender breasts, still have spotting and mild period, still have period pain though not as bad. have become allergic to paracetamol, i come up in hives. now for the past month have had a persistent bad headache that gets worse at times and persistent nausea that causes vomiting when real bad. Dr has done many tests and everything is fine, brain, organs, bloods and urine. He does not know what is causing this headache and nausea. Anyone else had these problems?

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  18. What I want to know is, has anyone after having the device removed after the full five years suffered from vaginal itching? I had mine taken out in 2006 to have children and suffered 8 years of terrible itching until last month when they re-inserted the Mirena for endometriosis. Since then the itching has stopped !!!!!

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  19. I read this thread to see about the allergens in the mirena. I have never seen the physician list of side effects! I suffered three years (three!!) with vaginal itching, swelling pain during intercorse,and trips to the Dr. They all said that it was most likely a yeast infection but it never cleared up. It was like I was allergic to my own body fluids. It hurt to pee. I finally had that thing taken out after switching through a few different Dr's. The next day I was starting to feel better. I have not had a single issue in that area since! Thank you God No way would I recommend this thing to anyone.

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    1. I'm going tomorrow to remove the Mirena. It's been a pain to have it! I don't have years with it but a brief trail was enough to know that it doesn't work for my body. I'm having the same bad experience that you did!

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    2. I'm on my 4th mirena coil. The last 2 I've had I'm sure have made my vagina itch. Driving me made. Now my breasts have started itching. Headaches are constant. I've not felt 100% for a long time. I've also developed pernicious anemia I wonder if that's connected? I'm now 52 and only had the coil fitted to stop my periods. Fingerscrossed I'm through the menopause as I really want this removed. Only had a new one last year and all this itching seems to be getting worse.

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  20. https://www.change.org/p/susan-ley-minister-for-health-michaelia-cash-minister-for-women-erin-brochovich-major-investigation-into-mirena-contraceptive-and-bayer-manufacture-australia/u/14268438

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  21. I had a Mirena IUD put in Feb of 2015 after my OBGYN and family doctor both highly recommended it for heavy bleeding and birth control. It seemed Ok at first as slowly over the first few months the bleeding slowed down. After about 4 months I started to notice my feet started to swell (the left more than the right). It also became uncomfortable to wear any shoes. I also gained weight, especially around my mid section which was new for me as I tend to gain in my butt or hips 1st but never my stomach area. I also experienced extreme joint pain in my knees, so bad that it was painful to get up from a sitting position and to walk up and down stairs. I also felt extremely tired and depressed more often than not. The last side effect I acquired was numbness and tingling of my hands/fingers during the day and even during the night. I went in to see my OBGYN in Sept to get it taken out. Instead of removing it, he wanted me to get bloodwork done to see if there was something else causing these symptoms. All the bloodwork came back normal. I don't take any other medication so I knew that either there was something seriously wrong with me or it was the Mirena IUD. In early December I had the IUD removed. It's been out for a month now and the numbness and tingling has gone away, the joint pain is gone. The swelling in my feet is still present but improving and the foot pain is gone. I still feel tired at times (probly b/c I have a 3 and 5 year old tho) and continue to have feelings of sadness. My period has also come back with a vengeance.:( I have a follow up appt. with my OBGYN in Feb. 2016 to discuss other treatment options, but I think I have learned my lesson to not try to mess with mother nature. I'd rather deal with bleeding once a month than introduce another hormone that will wreak who knows what kind of havoc on my body again.

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    1. Hey! If you could keep me posted on how you're going now you have it out..I'd really appreciate it! I'm only 23, and have had mine in for just over 3 years and am pretty much incapacitated from what I am starting to gather is from this Mirena.
      I'm swollen, fat, and in debilitating pain most of the time. All my joints swell up and I've developed IBS. I wasn't ever sick before I got this thing. Ever. Going to see a gyno this afternoon but I doubt they will take it out today. I'll probably have to make a follow up appointment. I just want this nightmare to end. I'm too young for this.

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  22. I have to say I believe that many of the side and effects you have all experienced are related to the IUD, however I am so shocked that so many of you had doctors who refused to take it out...it is your right as a patient to accept or refuse treatment. The same way that a Doctor cannot force you to fill a prescription and take a medication, they cannot refuse to take out an IUD if you ask them to remove it, no matter the reason. A few years back I had the Paragard IUD and unfortunately it made me severely anemic and I had to get it taken out. I was convinced that my issues were due to my IUD and even if maybe my doctor was not 100%/sure, she still took it out. You have every right to determine your treatment as a patient. Doctors can only make suggestions. Feel empowered to make your own decisions!

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  23. I was 42 when I had my first Mirena fitted for very heavy periods. I have had it changed 4 yearly (ish) as just had the feeling each time that it needed changing (regular brown spotting rather than no periods at all). I am now 56 and was told when the last one went in that it would see me through my menopause. I have had almost all of the 5% side effects and didn't realise the Mirena could be the cause until I read this blog! The weight issues, tiredness and hirsutism have been bad enough to deal with but since having the last Mirena fitted I have suffered very badly with acne rosacea to the point of depression. The thing that worries me is that if I get it removed then will the return of extreme heavy periods be easier to deal with than all the other side effects? Actually, I think I just answered my own question. First thing tomorrow I am 'phoning to make an appointment to have it removed!

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