Saturday, January 26, 2013

Me and My Mirena IUD: From Love to Serious Hate

On paper, the IUD seemed perfect for me. I needed to control my cycle due to being diagnosed with endometriosis, a condition where the the lining of the womb grows in other areas of the body, with the result being pain, bruising, bleeding, and infertility. Because the easiest way to control endo is through halting the menstrual cycle, my doctor put me on the pill that gives me 4 periods a year. I've always been opposed to taking the pill due to some serious side effects, but since my options were the pill, early menopause, male hormones, or constantly being pregnant for the rest of my fertile life, the pill seemed the best way to go.

Via
So small and yet so dangerous.
After a few years, I lost my healthcare and couldn't afford the ridiculous amount of money required to get the generic Seasonique. The wonderful doctors at Planned Parenthood pointed out that every type of pill is designed the same way - it tricks your body into believing its pregnant - so technically I could take any type of pill and just skip the last week, the sugar pills.

It looked skipping the last week of the pill was going to be my best option, but then my doctor suggested an IUD, specifically one with hormones to suppress my period. On paper, it seemed perfect. It seemed to be the same hormone dosage I was getting from the brand of pill I was on, it was birth control for 5 years, and I wouldn't have to pick up and pay for a prescription and pills every few months.

I decided to go for it. For the first 10 months I absolutely loved it. I raved to everyone about the Mirena and couldn't figure out why everyone didn't get one. "They're common all around the world, just not this country," I would explain to anyone who would listen.

But then... then everything started to go wrong. At first, it started off small with a yeast infection. Yeast infections are completely normal, right? I had never had one before, so I went to the doctor just to verify that I was okay. My doctor was happy to reassure me and give me a prescription to knock out the infection.

Except the infection didn't go away. For 2 months. When I applied or took medicine, my symptoms went away, but the second I stopped the medicine it would come back. My doctors weren't concerned that it constantly re-occurred. They gave me unhelpful suggestions like stop wearing tight or damp underwear/clothing, stop douching, stop taking antibiotics, stop drinking, lower my sugar level intake, and add more vegetables to my diet. Technically, these are all things can cause a yeast infection to linger, but I couldn't make the changes because I was already doing them. I turned to more natural cures, like garlic, apple cider vinegar, and yogurt, but that didn't help either. Finally, after 2 months, it went away on it's own.

But it was immediately replaced with an even more painful bacterial infection.

For about a month, I tried the antibiotics the doctor gave me, then natural cures when the antibiotics failed (and my health insurance expired). The same thing happened as before: I was okay (not better) when taking medication, but the day after I stopped, it came back nastier than before.

That cleared up after a month, to be replaced my a UTI that hung around for 3 weeks. Identical story with the meds.

Eventually, that too cleared up as suddenly as it appeared. But was I suddenly better? Oh no, definitely not.

I started having severe pelvic pain. The worst were the cramps that would shoot up from my pelvic area to my chest and would strike randomly. 

I started getting really tired. I would sleep for about 12 hours a day, I felt incredibly nauseous, my stomach started to get bigger, I felt like I was about to burst, I had to use the bathroom constantly,  and I could hardly move. Walking to the end of the block was almost too much pain for me to handle. Finally I saw a doctor, who insisted on an ultrasound and blood work, fearing cancer.

Luckily, it wasn't cancer. Unluckily, it was a massive cyst on my ovary. It had completely flattened my bladder, and had taken over my pelvis area, pushing all of my other organs out of the way. Since I didn't have health insurance surgery was a last resort, and I was sent home and told not to move, unless the pain got much worse, in which case I needed to go straight to the emergency room.

I found some natural treatments for shrinking cysts, and I got myself on that immediately! Apple cider vinegar, blackstrap molasses, beets, castor oil, I tried everything. I also cut out all alcohol, caffeine, anything bad for me. And somehow it worked. My cyst disappeared 2 weeks later - I could tell because not only did the pain go away, but my stomach shrunk and I was able to fit into my clothes again. 

I could also walk! It was amazing because walking was something I had definitely taken for granted before.

For a few months, while I kept up my super healthy routine, I didn't develop anything new, though my pelvis and specifically my vaginal canal were still incredible painful. It felt raw to the touch, though the doctors claimed everything looked fine. 

Over time, I started to get a little lax and would introduce some take out to my diet. I would have a few drinks here and there. Coffee a few times a week. I always tried to be very careful to monitor my body to make sure cysts wouldn't come back.

Instead I got something much, much worse. Physically, the by now common complaints of vaginal pain were accompanied by breast pain. Putting on a bra became painful. And then the mental torture started. Paranoia. Anxiety. Depression. Thoughts of suicide.

I'm not talking about your "typical" thoughts of depression, paranoia, and anxiety, which, unfortunately, I've had before. This was worse than anything I've ever experienced. For example, I thought my mailman was trying to kill me. I wouldn't go into my bedroom because it overlooked the street and I thought people, working with my mailman, had set up surveillance and sniper rifles. I forced myself to leave the house a few times, once for a baby shower, and I had several panic attacks where I was hyperventilating and basically unable to function on the sidewalk. I don't even want to mention the suicidal thoughts I constantly rationalized.

I had other symptoms that may seem normal but were completely out of place for me: rashes, insomnia (which replaced the constant need to sleep), joint pain.

But you know what finally happened? I started to get very specific cramps that felt like it was originating from my uterus, from my IUD, and I googled some of my symptoms. Everything could be traced back to the Mirena.

EVERYTHING THAT HAPPENED TO ME CAN BE TRACED BACK TO THE MIRENA.

The list of side effects was not that long when I had it inserted, or if it was, it was lacking from my information packet, but it was all there on the Mirena website, with the exception of the rashes and joint pain, but I also attribute that to the Mirena because they went away when I had the Mirena removed.

EVERYTHING WENT AWAY WHEN I REMOVED THE MIRENA.

Well, almost everything. I still have some energy problems, but they've significantly improved in the 3 months that I've been Mirena free.

The worst part of this was that when I went to my doctor, I told her everything that happened to me. I told her all of my side effects and she told me that there was no way that the Mirena was to blame. She told me I had a yeast infection, a UTI, and probably suffered from vulvodynia; I would need to see a specialist. 

I insisted that I had none of those things, that it was the Mirena, so she did a few tests. I did not have a yeast infection or a UTI, despite still having symptoms. She was confused, and told me it could be part of the vulvodynia.

I told her my side effects were listed on Mirena's website, and thus, were caused by the Mirena. I wanted it out. She again defended the Mirena and told me it was against my best interest to remove it. However, I insisted, so she finally agreed, all the while telling me that I was making a terrible mistake and I would be back within a month to get another one.

You know what? I felt better within a few hours. 90% of my pain and side effects were gone within a week. 

I know the Mirena can do a lot of good for a lot of people. I was one of those people raving about it for the first 10 months it was in me. But the last 15 months it was in me were the worst 15 months of my life, physically and mentally, and I'm putting this up for those who are like me, whose doctors don't believe them, and they can't figure out what's wrong with their bodies. It can get better. Remove the Mirena if it's causing problems. Don't wait it out.

My doctor wanted to put me back on the pill when I removed the Mirena, and I took her prescription because I didn't want to start another disagreement (the previous being whether the Mirena was to blame or not), but I knew there was no way I was going back on more hormones after the horrors I had just experienced. 

Stay tuned for a follow up post regarding my current birth control.

My follow up post on the birth control I'm currently using can be found here.

18 comments:

  1. Wow, I had never heard of this before. I have had some of those symptoms (the yeast, uti, pelvic pain cycle - not going completely away with medicine, but then vanishing and starting back several months later, when I never had problems with that before). Though not as bad a you. I also have had a lot of digestive problems, weight gain, mood swings in addition to the problems you listed, so my doctor told me that it must all be food related. I have changed my diet, but am still have issues from time to time. I never really thought that it could be my Mirena (though the symptoms did start around when I got it).
    It is actually time for me to get my Mirena taken out pretty soon and I have been considering getting a non-hormone copper IUD, but I am still looking into it.
    I am scared to try other methods like pills because I got pregnant while on two different types of pills (yes I was taking them correctly, same time of day yada yada) and I got pregnant while on the depo shot (see i told you it wasn't because I was taking the pills wrong). Both of which are what 99% effective, I think my body just rejected them or something I don't know. I know it seems fishy, but that has just been my weird experience.
    Anyway, I am interested in what you decided to do birth control wise

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    1. I'm sure your symptoms are related to the Mirena if no other causes can be found! I do find it unusual that you got pregnant on the pill and the shot - honestly I'm surprised you haven't had something happen with the IUD! From my own research, a copper IUD certainly won't have the hormonal problems, but I wasn't too keen on possibly having heavier cramps and longer periods since I have endo! I'll post my follow up in the next few days so you can make more of an informed decision.

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  2. Hi, I have been searching for an IUD and UTI connection. I've had mine for 5 years, just got a new one. For the last two years I've been battling recurrent UTI, and I just have a lot of pelvic pressure. I am getting this removed, I wish I could do it tomorrow.

    How are things now for you? I'm terrified I've damaged my bladder forever.

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    1. The majority of my symptoms went away within the first week. My bladder was very damaged and that took a few months - but right away I did notice a difference. Today, almost a year and a half without the mirena I can say that I am 98% better. I still have recurring ovarian cysts that I never had before (though they are much smaller and much less painful than on the mirena) and I still have some problems with pain in the vaginal region (aka vulvodynia - another problem I never had before the mirena). Ultimately, I am healing and there is progress and even if it takes a little while, I'm sure your bladder will heal over time, especially if you take care to treat the rest of your body right. Good luck!

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  3. I gotta say one thing (many things actually in a piercing tonal rage!) but first is first. We are Sinners cause we enjoy fucking , therefore we must be condemned ! burn, burn the witch ! Feminist rights is just another move on the propaganda wheel . We are the future gotta represent ;). Raise MY blessed little angel . Not for the Fascist pedophiliac reptiles,who hacked their way through med school with their blood money and amphetamine . C'mon woman are healers . Thats what we've been constructed to be best at , therefore doctor scam better fuck off . its the 21st century , … thats my rant, ;) stay strong k

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  4. Thankyou so much for sharing. Truly.

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  5. After 4 years of yeast infections weight gain and acne I am getting mine out, and my husband is getting a vasectomy. Truly evil little things.

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  6. This is crazy! I have been on Mirena for 4 months and have been experiencing the same side affects! I feel like a lunatic when I speak to my doctor because he tells me it cannot be the Mirena! I have not experience the anxiety but I have been so depressed. I feel super sad all the time for no reason at all! This is ridiculous, Im getting this out!

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  7. Hello. I have had the Mirena for about 3-1/2 years and in the beginning it was fine but over the past 2 years I have had more yeast infections than I can count and the doctors always tell me they really do not know why. I am having the Mirena removed on January 28, 2015 and I cannot wait. I have gained weight that I cannot lose, I am exhausted all of the time and I have lots of acne. Also, my breasts are pretty much always sore but the worst part is the recurrent yeast infections, and yes I have tried everything. I never had any problems like this before I had the Mirena so hopefully getting it removed will help!!

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  8. Thank you for sharing your story! In April 2014, I started my weight loss journey by exercising and dieting. I lost about 20 pounds within the first 3 months. In June 2014, I decided to get the Mirena because I wanted to avoid getting pregnant again. I have two little boys and I was not ready for a third child at that time. Fast forward, after the first few months of the Mirena, I did not have any issues besides irregular periods which the doctor had caution me before my insertion. I enjoyed the Mirena because I definitely have been pregnant free for the last 1 and half years. However, by the end of 2014 my workouts increased and I began to get really serious with my weight loss journey. What started out as 3-4/wk workouts became 5-6/wk workouts. And I became a cardio addict! This is when I noticed my first yeast infection. I would be drenched in sweat from my spin classes and drive home to shower. Of course, the doctor said "you need to change your clothes immediately after workouts. So I did. And the yeast infection came back, I asked her could it be the Mirena and she said there NO are studies that links yeast infections and the Mirena. So I took the meds again and it cured the infection. After a month or so the infection came back. The nurse had mentioned to me that I could just call in for yeast infection prescriptions if it comes back. I found myself having more yeast infections in the last year than I have ever has in my entire life! So today I am starting my new diet by avoid ALL carbs at ALL costs since carbs=sugar=yeast! Because this last infection has not gone away, it use to clear up for two weeks and back again. Now it clears up only on meds and returns as soon as I am done with the meds. After reading your story I am CONVINCE that it is not my eating habits (i eat very clean anyway), not my clothes (i've changed to very loose fitting clothes), not my underwear( I only wear cotton), and not my soaps( I only use unscented), IT is this DAMN Mirena. I am upset it took me this long to realize it. Thank you sooooooooo much for sharing your story.

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  9. I just got the Mirena in Feb 2016. I've already had 5!! Yeast infections. My husband is like, 'didn't you just have one?" I'm not prone to UTIs. I've had ongoing painful cramping - enough to completely pass out at work at least 2x per month. Where are the lighter cramps? Sure, my period is lighter, but if it lasts 10 - 15 days, what's the benefit? I'm so done with this thing. As soon as my insurance kicks in next month, the Mirena is out of here! I may throw it in the street so it is crushed!!

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  10. I had such severe joint paint with the mirena,that I could hardly push myself out of bed. Also, my blood pressure, which has always been lower, was through the roof. I had mine for two years. I would never have attributed my pain to the Mirena if I hadn't been searching for weight gain associated with the IUD. I gained twenty pounds in two months once the Mirena stopped my menstruation. I just happened to start reading that others had joint pain associated with the device. It is in the list of side effects the doctor is supposed to tell you about. In Canada, it is in the patient pamphlet. Had I known, I'd have NEVER had it in two years. My pain went away after removal, but Im not the same. It's been 6 months and I'm hopeful. I feel better and more positive. My doctor assured me that all.of my symptoms would still be there after removal. I insisted. He was wrong. So glad it's out!!!

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  11. I had such severe joint paint with the mirena,that I could hardly push myself out of bed. Also, my blood pressure, which has always been lower, was through the roof. I had mine for two years. I would never have attributed my pain to the Mirena if I hadn't been searching for weight gain associated with the IUD. I gained twenty pounds in two months once the Mirena stopped my menstruation. I just happened to start reading that others had joint pain associated with the device. It is in the list of side effects the doctor is supposed to tell you about. In Canada, it is in the patient pamphlet. Had I known, I'd have NEVER had it in two years. My pain went away after removal, but Im not the same. It's been 6 months and I'm hopeful. I feel better and more positive. My doctor assured me that all.of my symptoms would still be there after removal. I insisted. He was wrong. So glad it's out!!!

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  12. I'm currently undergoing many tests to figure out what is wrong with me. I know it's this damn mirena. Ovarian cysts, cramps, joint pain, fatigue, lower back pain sore muscles, blurry vision, weight loss, hair loss, positive ANA, chronic utis, I can barely get myself out of bed some days. Severe breast pain. Anxiety and depression. I've NEVER had any health issues whatsoever before the mirena. My health spiraled downward quickly. I barely recongize myself. This has been hell and now I have to have surgery to have the damn thing removed because the strings have "disappered". I am going to have a silicone test done to check for silicone poisoning because the device is made of silicone and is causing issues for so many women. This piece of garbage needs to be banned.

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  13. I got mine Feb 2016 and had my first yeast infection in March then for the past month, yes month have had one that wont go away. I asked my Dr to take it out and he keeps saying give it time and it isnt the mirena. Any advice on how to convince him to get it out already?!? And also having lots of pain in lower abdomen and bleeding after sex, that is, when we can actually have sex. Between the yeast infections and pain, it doesnt happen as much. I wish i had never gotten it or could just get it out myself. :(

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  14. I got mine Feb 2016 and had my first yeast infection in March then for the past month, yes month have had one that wont go away. I asked my Dr to take it out and he keeps saying give it time and it isnt the mirena. Any advice on how to convince him to get it out already?!? And also having lots of pain in lower abdomen and bleeding after sex, that is, when we can actually have sex. Between the yeast infections and pain, it doesnt happen as much. I wish i had never gotten it or could just get it out myself. :(

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    1. Mine told me that as well. I finally told my doctor that I didn't want the Mirena and I'd be using other birth control because the cramping was too much (as they told me all other symptoms weren't related). I had to talk to 3 different people about how it was a terrible decision, and they finally told me they'd remove it, as they couldn't stop me from making my own health decisions, and I'd just be back in another month for another. Yeah, right. Good luck!

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