My Mirena Misery

"Never let your best friend walk behind you if you don't want to know the truth."
-Melissa Mermaid

While many women my age are fanning away their hot flashes, at 51, I find myself still seeking the perfect method of birth control. For years it was a no-brainer, because I was pretty happy with my Paragard IUD but they need to be replaced every ten years. So I found myself at that crossroad.

Knowing menopause has to kick in at some point during the next five years, getting another Paragard seemed to be overkill. My in-depth internet research and a bit of message board polling brought me to the birth control wunderkind--the Mirena IUD. Or at least it seemed to be at the time.

Bayer/Berlex specifically state that their product produces "no significant weight gain." The side effects it does claim are those similar to birth control pills and when on the pill in the past, I did not experience any problems. I was very happy at the prospect of having less horrendous periods (another positive effect of the device's use) because of the way they negatively impact my autoimmune disease. Undoubtedly, the less I suffer in that regard, the better (for me--and everyone around me). So I was confident with my choice and my gynecologist concurred.

In late November 2006, my gyno inserted the Mirena. I felt quite a bit of lingering discomfort ("pinching" pain in the uterus for several days) but suffered through it. I suddenly had some greasy acne on my forehead but my hairstyle would cover it. Initially, there didn't seem to be anything I couldn't handle.

In early April 2007 I was preparing materials for a seminar I was giving at a weight loss surgery conference on the west coast. I was in the midst of my period and my right breast felt particularly heavy and sore. (Because of the Mirena, my "flow" had become virtually nonexistent but I still experienced the discomforts inherent with that "time of the month"; breast tenderness was more extreme than it had ever been in my life.) I self-examined and realized I had what felt like a rubbery mass in my breast (think one-half of a silicone "breast cutlet" inside the breast, instead of stuffed into the bra). It freaked me out but I pushed the fears aside and decided to wait until after the conference to see if it remained.

Soon after I returned from California, I was walking in the city with my girlfriend and she was too busy window shopping to keep pace with me. When we stopped for lunch, she said: "You know, I noticed when I was walking behind you that you may have gained about four pounds but that's good … really good. You know you were getting too thin."

This is probably the worst thing you can tell someone with a weight history like mine. I was wearing a size 0 jean that day and thought all was right with the world. Upon hearing my friend's statement, I suddenly felt deflated. All I could think was that I was heading for one of those weight gain free-for-falls like in the old days.

After I got home, I started tearing through my form-fitting jeans. Most of them fit but a couple pairs of the no-stretch slim jeans that fit in January wouldn't slide over the widest part of my hips. Either my weight was redistributing or I was gaining weight--albeit in one particular area of my body.

Feeling panicked, I started scrutinizing everything I had been doing of late: Still maintaining a very low carb lifestyle with little deviation and increasing activity daily. Check. Were my skinny days over? In spite of having had weight loss surgery, did my body want to be fat so badly that no matter how careful I was, it would be a fait accompli that I would still utimately lose my quest to stay thin?

Upon discussing the matter with my husband (who, of course, pleaded ignorance on the "Do you think I'm gaining weight?" question), he volunteered: "Maybe it's the Mirena."

I dismissed the idea, believing the Mirena literature: "But that's their claim to fame--'no significant weight gain.' I don't understand what I'm doing wrong. What am I missing?"

For the first time since having weight loss surgery nearly three years ago, I started considering fad diets and thought about buying Hoodia. There was no way I could let myself get fat again and I was ready to accept all the blame for the changes in my body, even though there was no traceable reason that could be the culprit for the weight gain. Little did I know something else would take precedence before I could get to the bottom of the mystery.

It was now early May and my "time of the month" again. My breasts felt sensitive and when I self-examined, the mass was every bit as offending as it had been a month earlier. Actually you could see the lump with the naked eye.

When I called my gynecologist, he referred me for a mammogram; it was shocking to discover how difficult it is to get a mammogram on the fly these days--even in the New York City area. Eventually I found a competent walk-in facility that took me right away. They also called my gyno for approval to do a sonogram right then and there. (Obviously the misogynists in the medical community still stand by mammograms to check for lumps in the breast when the reality is that the sonogram is the only current method for determining this most accurately.)

The next day my gynecologist reviewed the films with me. Having already self-diagnosed on the net with benign fibrocystic breast disease, he said that I was mistaken and this was a more solid mass--not a grouping of cysts--but that I "should remain positive."

Much easier said than done. My mind started going places I never thought I'd go. Extremely sympathetic and prayerful when any of my "sisters" experienced breast cancer, it never actually had hit close to home. It didn't run in the family, in spite of the fact I come from a long line of ridiculously large-breasted women (I always say I got my father's breasts, certainly not my mom's).

(Fully italicized paragraphs that follow are unedited excerpts from my journal, random thoughts written in the darkness of my bedroom on my laptop while in the midst of my "crisis.")

"It's interesting how much impact the breast has in our minds … I never really thought about my breasts much … They were there--not small, not big, somewhere in between ... I learned how to wear the right bras and when I'm thin, I push the excess skin into the cups and look pretty damned zaftig … But if there's anything that will make you appreciate your sagging, aging post-weight loss breasts, it's the fear of losing them altogether. "

"It's funny how an experience like this changes your perspective on so many things … I look at bras and sexy tops differently, wondering if the ones I already have will ever put that extra bounce in my step again … Then I started examining my life for the umpteen-thousandth time to see what I could have possibly done to attract cancer--whether it be environmental or organic or spiritual … I keep wondering how numbered my days are … Do I move up the cruise? … Do I not get my next six month's supply of contacts? … Do I stop planning my future and start planning my funeral???"

My PCP referred me to Dr. Marie Chen--a great breast surgeon in New Hyde Park--but her first available appointment was nearly a month away. It seemed to me that this was a painfully long time to wait. Without whining, I presented my concern to her assistant: "The thing is, we're talking about a 1"x3" mass that essentially appeared overnight. When I had a breast exam by my gynecologist in January [Mirena follow-up], there was nothing there." I was assured that she understood my problem but that they had "several patients in similar circumstances."

"'Wait and see' … 'Wait and see' … See what happens when you like your life out loud?"

We had some things to pick up for Mothers' Day and were on the run, so we made a stop at IHOP. I ordered my usual omelet, no potatoes, and decided to splurge on one of their corncakes with sugar-free syrup. Since my banana belly can't hold too much food anyway and I had already filled up on protein, I could only eat a few bites of the corncake. When I had had my fill, I looked at it. This was what I left at the table. No matter how much I thought I had it all together, thoughts of a hole in my breast persisted.

"Right now I gravitate between strength and mind-freaking-numbing fear. It is an interesting contrast to be experiencing this the day after seeing Mom at the nursing home. I don't want to linger without my wits … There is something oddly comforting in having an idea when your life will be over … Yes, I get carried away with my thoughts … I kind of cover all the bases in the "what ifs" … good, bad and indifferent … I don't like being too surprised. All's I know is if it is very very bad news, I want to go back to California for a while … Maybe even make that trip to Hawaii … and I've got to make sure [my husband] has endless unconditional support."

Man oh man, the things that go through your head when you think there's a fast-growing cancer surging through your body. I continued to examine every aspect of my life to pinpoint the culprit. Was it my laptop computer? Was it my Bluetooth that I used when driving once, maybe twice, a week? You scrutinize everything trying to figure out what it is and how to fix it.

"So it's in motion and the verdict is a mystery for the time being. Feeling numb and unsure and full of questions. How annoying that one can be kept in the dark about what's happening inside his/her own body."

Dr. Chen required a hard copy of the actual breast x-rays and sonograms, so a couple of days later, I had to make another trip to the walk-in facility to retrieve them.

My honey and I stopped for lunch at a restaurant where they have butcher paper covering the table and provide a glass of crayons. I absentmindedly started drawing and by the time I had finished, I found that I had drawn a bulls-eye with arrows pointing outward. It doesn't take a genius to tell you that the thoughts occupying my mind were influencing my artwork.

With the films in hand and a preliminary analysis forwarded to Dr. Chen's office, my appointment was quickly moved to the upcoming week. Cool, I thought; this waiting is not fun. Then, my next thought: If they're moving me through so quickly, then there's something that's alarming them and it can't be good.

When Dr. Chen checked me out, she said it certainly wasn't my imagination. There was indeed a mass but since it did not feel "rooted" and was easily moved with pressure, she believed it to be a "fibroadenoma," which is most commonly benign. She referred me for an ultrasound-guided core biopsy.

Still wracking my brain for what I was doing wrong, it crossed my mind that the Mirena might have something to do with the breast mass (although my research revealed that 1 in 2 women will have a medical issue involving their breasts sometime during their lifetime). It was a fleeting thought and I figured if I had the scare again, I wasn't going to take any more chances; I would have the device removed. This was just too much to go through for a method of birth control.

The doctor who performed the biopsy was very kind and we seemed to have connected. When she called less than 24-hours later to tell me it was benign, all my plans for a rockin' funeral went on the back burner (way back ... hopefully like 30 years-or-so back).

Nonetheless, Dr. Chen wanted the mass removed and so did I. Having researched several breast cancer websites and chat groups, one particular phrase stayed in my mind: "The only good lump is one that's in a jar."

Things continued to run swiftly and smoothly; I was scheduled for an "excisional biopsy" within two weeks. The staff at LIJ Hospital was exceptional and aside from a delay getting into the OR, the procedure went like clockwork: I had the most divine anesthesiologist--Dr. Hanania. Went right out in the OR and woke right up when it was over 45 minutes later. Okay, I was a little bit dippy but otherwise, felt pretty darned good. I didn't even use any of the Tylenols with Codeine the surgeon had prescribed.

Totally grateful I had "dodged a bullet," I was thinking that things had almost gone too smoothly. Then--within days after surgery--I was sure of it. Another mass--the exact size as the previous one--took its place in the same breast.

This was overwhelming. It didn't even seem as though it could be possible. Then I remembered reading the story of one woman with breast cancer: In the midst of her chemo treatments, new malignant tumors kept appearing in her breast. She knew it and the doctors told her it was impossible. Not only was it possible, it was indeed happening. So I figured in the worst case scenario, another breast mass was replacing the one that had been removed.

That's what led me to resolve the recent mysteries I'd been experiencing. I took to the net with a new subject to Google: "fibroadenoma of the breast" Mirena and there it was: On page 9 of a document not otherwise available to those of us in the U.S.: In .2 of the cases after three months and 1.1 of the cases over five years, fibroadenoma of the breast was listed as a possible complication. What I want to know is: Why is this available on the Mirena Canadian site but not the Mirena U.S. site?

Yeah, yeah, I know … it's a small percentage. But if you don't think a serious cancer scare is a high price to pay for a birth control method, try living my life those two months. When doing my research about the Mirena prior to insertion, I couldn't exactly look for something I had no idea was a remote possibility. Do we all need to search every country's version of product pages to find what isn't being disclosed for Americans to examine? If not for the fibroadenoma, I never would have known the terminology to ultimately find the connection.

Then I thought: What if [my husband] is right and the weight gain is due to the Mirena after all? So I Googled: "weight gain" Mirena and I got an eyeful. A website containing 400+ posts by women who had the Mirena and were experiencing weight gain. Approximately 300 women--a very large percentage of whom had never before in their lives experienced a weight problem--were experiencing the one thing Bayer/Berlex specifically promised the Mirena wouldn't: "significant weight gain."

Now some would say that a ten pound weight gain wouldn't fit the category of "significant weight gain." No? Tell all of us that--those who apply ourselves everyday, in every way, to staying slender and fit.

The most extraordinarily vexing factor is that whatever you gain on the Mirena, is impossible to lose. Why else would it be that when I had the IUD removed, I immediately started to lose a significant amount of excess water. The widest part of my hips almost instantly started paring down to where it had been pre-Mirena. By my first period, ten pounds were gone and I was back in my no-stretch slim size 0s. It appears that this device provides an overabundance of hormones that just does not serve the bodies of some women.

Then I realized there were additional problems that I had been experiencing that were clearly Mirena-related and until its removal, I had been ignorant to them. Some of them were pretty serious--like loss of concentration and libido (isn't that ironic?), and blurry eyesight. I had been attributing these symptoms to my autoimmune disease and the onset of warmer weather but here we were in the middle of the summer and those symptoms disappeared within 24-hours after I had the Mirena yanked.

It may seem to some that I'm using this forum to stage an old-fashioned rant: Oh my God, I gained ten pounds … blah blah blah … I was one of the .2 who got a benign breast mass … blah blah blah … To a degree maybe I am ranting but what I'm most frustrated about is that not enough people in the medical community pay attention to what a woman says about her body. I adore my gynecologist and I know he listens to me but he was shocked by my findings. All he knows is what he sees in the literature and I was the first patient to either connect the dots or verbalize them to him. (Ever since having this experience, I've told every doctor I know—just so they can't say they'd never heard of such a thing before.)

Generally, it appears that approximately 10% of Mirena users gain weight. The other 90% tend to find the product quite tolerable. That 90% figure, however, does include a substantial number of women who don't concentrate as much on having a whittled-down silhouette and are the ones who seem to have the least problems with the Mirena. However, if you're all about being as thin as you can be--and have managed to get there--you may very well notice a weight gain with the device.

In a world where we're all being lied to on a regular basis in every area of our lives, I saw myself paying the ultimate price just so I wouldn't get pregnant at a delicate age. Feeling lied to by a manufacturer that knew how preoccupied women are with weight gain, we were sold a bill of goods (or at least victims of a lie of omission), and bought it hook, line and sinker. We put ourselves at risk for a myriad of health problems over which we would have absolutely no control as long as the device remained in place--not the very least of which is the frustration of unexplained weight gain.

Further trying to understand why the impact of the Mirena was so profound in my particular case, I just couldn't accept a que sera sera (whatever will be, will be) response. I had been on the pill many years ago and never had this kind of a problem. The only variable here is that I also had never been quite this thin before. In my non-medical evaluation of the predicament, I believe it has something to do with the body fat percentage. If yours is low, I don't think there's enough fat to absorb the hormones and they run more rampant in your body.

I would love someone to back me up on this theory who knows science to see if my layperson's assumption makes any sense. (And while you're at it, will you also back me up on my theory that kids are going through puberty earlier because their mothers were on the pill for a number of years before getting pregnant? Duh! Nobody ever talks about this but I'd almost bet my Kitty on it!)

All suppositions, theories and drama aside, it's been a hell of a year and I'm glad I can tell you the tale from the benign side. But sisters, if you know something in your body isn't right, don't let anyone ever tell you that it's your imagination. I had five doctors blow off the edema in my left leg and another schedule a Doppler because he thought it was a blood clot, but it took my brilliant endocrinologist to quickly diagnose me with lymphatic edema. So every time I see a doctor, I'm sure to mention whatever problem I'm experiencing because if it doesn't seem right, it probably isn't.

Overall I'm pretty angry about my Mirena experience. Still, it is just that: My experience. As with almost everything in life, YMMV (your mileage may vary).

Believe it or not, I did manage to find a couple of upsides to this experience: The "new mass" turned out to be a seroma (accumulation of fluid where the original mass was removed; it was aspirated and nearly three months later, it's almost gone); and since I continued to appply weight loss methods while the Mirena weight gain concentrated around my lower abdomen, hips and butt, my legs are thinner than ever!

But then of course, there's this permanent scar on my breast … We'll chalk it up to a lesson well learned for me and a product warning for others. As a matter-of-fact, I highly suggest that all women very carefully consider and thoroughly research any birth control method that introduces/integrates hormones (Seasonale--also manufactured by Bayer, Nuvaring, Depo-Provera, etc.).

Oh ... By the way ... Honey, you were right. He just loves it when I tell him that.