Missing myself- My Mirena Experience

Before I begin, I would like to note that I am not a physician or am dispensing any medical advice. :) I am solely sharing my own experience with the Mirena IUD in hopes to help educate others before they make a birth control decision. It is so very important that we are in charge of our own health, knowing fully as much as we can before we make decisions that will affect it. This is my story...




5 years ago, shortly after the birth of my second daughter, my husband and I started looking for options when it came to birth control. My family has history of stroke, so pills weren't necessarily the best option and after hearing others experience with the Depo shot, I was not interested in it. At my 6 week post birth appointment, I spoke with my doctor who recommended the Mirena IUD as he'd seen great success with it and was a huge proponent. It was a newer form of BC and lasted 5 years. At that point we weren't sure whether we'd like to add any more to our family and wanted to keep our options open, so it seemed like a good plan. We made the decision to go with it. Insertion went well, although uncomfortable. I would relate it to a mild labor contraction. Others have had very little or no pain, some much more. I didn't just love it, but after a pain reliever was okay.

At this same time, I was struggling with postpartum depression and was prescribed Cymbalta. I started feeling just off, not really good way to explain it, but I contributed it to the side affects of the Cymbalta because Mirena, on the books, has very few side affects. One of the biggest changes I noticed was my attitude just becoming cold. Nothing made me sad or empathetic. I'd gone from a happy crier, to a non emotional person unless it was anger. There were 2 versions of Amanda. Overly relaxed/not caring and angry. No in between. After about 6 months of the Cymbalta, I'd had enough and stopped taking it.

Over the next 3 years, everything seemed to be okay, or so I thought. There were different times where I could just feel something was off, but could never put my finger on it. I would go through times of high anxiety to being very lethargic. I was experiencing headache/ migraines more often and my moods started shifting with little to no real cause. I was also starting to lose a lot of hair and my skin would go through phases, especially on my feet, of just peeling off in huge pieces. Listen, I know it's gross, I get it!  Since I'm a 'last resort' go the the doctor kind of gal, I didn't make an appointment to look into what was going on. I just dealt with them as they came and would find some reason to justify what was going on. (stress, allergies etc.) I talked to a friend about the possibility of Hypothyroidism, but never did go have the blood work done.

Then, in the early summer of 2012, everything started going downhill and fast. I started feeling more and more off. My hair was coming out in small hand fulls every time I showered or brushed. Thankfully, I have super thick hair, so it didn't become noticeable to anyone else.  My hair also started greying at warp speed. My dad went grey very early and so I somewhat expected it, but because I was losing so much, everything that grew back in, was grey. Over a years time, the amount of grey increased by an easy 80%. I went from having 3-6 strands hidden throughout, to this...

The smaller picture shows what my hair looked like when I began the Mirena and then 4 years in. Now, having finished the 5th year, it is considerably greyer than the larger picture.

What I should have known then was that something was not going right, but again, I made other excuses for the symptoms I was experiencing. I mean, grey comes with stress, right? In a time my marriage was struggling and I was raising 2 little girls, it could have easily been stress.

As the year continued, the symptoms started becoming increasingly worse.

 Here is a list of what I started experiencing on a consistent basis:

Headaches/Migraines - once a week minimum

Skin peeling/ dryness- skin coming off in large pieces esp. on my feet

Deep pain in my left lower abdomen- felt as though I was being stabbed

Sharp pain in my left breast- just under my armpit and around my back. I would have to sit and hold it to find relief. Pain relievers wouldn't touch it.

Severe mood swings/ irritability- read below for more

Periods returning and not on a regular cycle- went from no period at all to light spotting to 2-3 a month.

Light head/ Dizziness/ change in my vision- especially from turning my head too quickly or trying to focus

High anxiety- crippling fear of things our of my control

Bloating & water retention- never experienced before. Became much worse in the last 6 months causing an 8-10 weight gain around my cycle.

Skin break outs/ Milia - especially under my eyes

Mind racing/ forgetful/ unable to concentrate- one thought would cause a train reaction to 400 others. I was also forgetting very simple things or what I was talking about mid sentence

Insomnia- mostly caused from not being able to quiet my mind

If I had to pick one symptom that I hated the most, it would be the mood swings. I'm not talking about just getting cranky. I'm talking about one very small trigger that would ensue in pure rage. Screaming, yelling, throwing things anger. This is NOT my personality. If you know me and are reading this, you're probably surprised. I remember in these moments, internally, thinking "what am I doing???". Almost as if something else was completely taking over my mind. It was such a terribly helpless feeling and most unfortunately, my little family suffered the most for it. I also can't tell you how many pregnancy tests I took throughout the last 5 years as different symptoms appeared. Especially when the periods began again and were so irregular.

Laundry list, right? Now, before you rant, I know I should have seen a doctor much sooner than I did. It was a total fault and lack of care for myself and I regret it.

It wasn't until I started experiencing the sharp pains in my lower abdomen and breast that I really started becoming worried. There is history of breast cancer in my family and also of premenopausal hysterectomies. I had pretty much convinced myself that I was suffering from Hypothyroidism with all the other symptoms, but these were not on the list. The thought of it being the Mirena was in the back of my mind and I'd considered asking my doctor to remove it just to see, but wanted the hormone testing done first. My husband would soon be having a Vasectomy and so there wasn't a need to remove it just yet if we didn't have to. I finally made an appointment with my doctor in September of 2013.

At my visit, I expressed my concerns with my doctor (who I love!) and shared my thoughts on the hypothyroidism, the pain and worry of breast cancer. He did a thorough exam and I was relived to hear that he found no lumps in my breast and attributed it to the lymph nodes swelling during my cycle. He ordered the hormone test for the hypothyroidism, but the pain in my side he wasn't sure about. He suspected an infection in my uterus and ordered an RX to take for 2 weeks and to return for a follow up. 

The next weeks were horrible as the pain in my side only got worse and I felt horrible.

At the 2 week checkup, I learned that my hormone test came back within the normal range (although on the low end) and he asked about my pain, expecting it to be better. I told him how it had actually been worse and the next words out of his mouth were , "then it's the Mirena."

It had to come out and it needed to come out and immediately. Within minutes, we were set up for removal.

(before reading on, please be aware that it may be TMI for some)

Removal of my Mirena was anything but easy. My doctor could not find it. He went through 5 different types of forceps before he decided that he could not get a hold of the IUD for removal. I was moved into another room where he could use an intrauterine camera to look for it. I was laid back in a chair that tipped me upside down and filled with saline. I have to admit that at this point, I was so scared. I'd heard story after story of the IUD breaking lose and traveling into the uterus or abdomen causing the need for surgery to remove it. I was by myself and just wanted my husband there to hold my hand. I was working hard at not crying and made light of the situation as best I could by asking for a lollipop  when I was done (which I never got) or asking to watch the screen as they navigated my reproductive system. 

 Thankfully, after using the small camera to find the strings, he was able to successful (painfully) remove the Mirena. It had shifted and become lodged higher in my cervix than is normal. 

After the procedure was over, my doctor advised that it was likely I would bleed for a few days and to come back in 6 weeks to see how things were going. That we would only know if it was the Mirena causing the pain by letting my body have time to heal. If that wasn't the cure, we would go on to the next time. He looked at me with concern in his eyes and said, "I'm really hoping it's the Mirena. I don't want to go to the next thing."

I spent the next week with severe cramps and bleeding. It was the first real period my body had in 5 years and I paid dearly for it. I was tired, emotional and useless.

Here is where the story takes a happy turn. Within days, I started getting the old Amanda back. Within 2 weeks, the pain in my side was gone and within 4, so was the pain in my breast. 2 months later, I can happily say that EVERY symptom I listed above has subsided. No headaches, no dizziness or light head, I am much more relaxed and my anxiety level is lower than it's been in 5 years. My skin is slowly clearing and I have energy to get done what I need to in a day. I can also lay my head down at night and fall to sleep very quickly instead of running through 101 different thoughts. My cycle has already returned to a regular, consistent cycle and my hair loss is starting to slow. I also cry all the time. :) That may sound like a bad thing to you, but after going through 5 years of not being able to process emotions through crying like a woman should, I love that sappy commercials or happy occassions stir my heart to tears. I'm an empathetic crier and I like it thank you very much!

The one thing that's taking a little longer would be the mood swings and I'm not even sure if it's because hormonally, I'm still trying to balance out, or because when I do get worked up, I revert back to how I've responded over the last 5 years because it's what I know as my normal. I'm working VERY hard on things like counting to 10 or taking deep breaths before I react so I make sure I do it as logically and calmly as I can. I will say that it takes A LOT to get me to that point now when before, any dent in my day would ruin it for all involved.

I am becoming the Amanda I knew was in there once again after I had all but accepted that the Amanda that was existing over the last 5 years was the one that would always be. My Mirena experience was not only hard and detrimental to my body, but to my role as a wife, mother and friend. 

I know this has been a long post, but I find it so important to share with you what I endured. Not to make a decision for you and your own birth control needs, but to share information that may help you make a decision that suits you best. As women, we need to know exactly what we're putting our bodies through and putting in them. If you google Mirena, you will come across forum after forum after forum of women who have stories just like mine. Some not as bad and some much worse. Some also experience what is now called 'The Mirena Crash' after removal and you can even find detox programs dedicated to this very thing on Pinterest. You can also find numerous class action lawsuits, however, when the company that manufactures the IUD is confronted, they say that only a very small percentage experience these levels of side effects. In my opinion, if 1 does, it's 1 too many.

These are the "known" side effects as stated on the Mirena Website:

Only you and your health care provider can decide if Mirena is right for you. Mirena is recommended for women who have had a child.

• Don’t use Mirena if you have a pelvic infection, get infections easily or have certain cancers. Less than 1% of users get a serious infection called pelvic inflammatory disease. If you have persistent pelvic or abdominal pain, see your health care provider.

• Mirena may attach to or go through the wall of the uterus and cause other problems. If Mirena comes out, use back-up birth control and call your health care provider.

• Although uncommon, pregnancy while using Mirena can be life threatening and may result in loss of pregnancy or fertility.

• Ovarian cysts may occur but usually disappear.

• Bleeding and spotting may increase in the first 3 to 6 months and remain irregular. Periods over time usually become shorter, lighter or may stop.

Mirena will not admit, even after hundreds of cases, that what I experienced is due to their product. I wasn't sure it was because of it either before it was removed. But I can say with 100% certainty, that it was in fact because of my choice to have the Mirena IUD inserted into my body. 

I am grateful for the support system around me and my faith. Without them, I do believe there were times when the constant struggle to find relief  or the battle of emotions in my head and hormonal imbalances could have caused me to make a very unfortunate choice.

I encourage you to KNOW the facts. 

DO the research before you make any decision that may affect your body.

Be IN CHARGE of your health!

- Amanda