Tuesday, October 2, 2012

The Mirena IUD that Perforated my Uterus

A fifth pregnancy brings LOTS of questions, they include:

*Wow, 5 kids? (um, obviously)
*Are you done yet?  (yes, I was done at 4)
*You're having another one? (um, obviously)
*You must have a HUGE house? (nope, just average size)
and my favorite...
* You do know how that happens right?

Clearly I know how to get pregnant!!  I have done it FIVE times, so yep, we have it all figured out.
I assume what they are asking is:
  "Why don't you use Birth Control?"
but they know its none of their business so instead they ask, "You know how that happens right?" and they think they are all funny, clever, coy, and original.

I answer as calmly and sweetly as possible,
"Yes, my children are all planned"
The truth is, #5 was not planned, he is very much wanted, he just came a few months sooner than planned. (I wanted a spring baby for insurance reasons)

What I want to say is,
   "Actually my family planning is absolutely none of your business.  But since you asked I guess I will just tell you. 
  1.  Birth Control Pills  make me CRaZy!!
  2.  Condoms are super uncomfortable and inconvenient, although they were effective in spacing our kiddos.
  3. That foam stuff...yep, allergic to it.
  4.  I used a Mirena IUD from fall 2006 till winter 2009. Today I paid the final bill on its removal.
That's right folks, I paid over $125 a month for 20 months, and that was just my share, insurance picked up the the rest of the $12,000 bill.

I was a bit shocked that a 45 minute laparoscopic surgery cost over $12grand, but it did, and it was worth it, because the prior 18 months had been a living hell, so you'll have to excuse me when I choose not to use birth control.

And now the actual IUD Perforation story for those of you who have had similar experiences and need to know you are not alone.

Pregnancy is not easy for me, I get very sick and then have very large babies that make the last trimester exhausting.  DS6  was enormous, the size of a 6 week old.  To complicate matters I hurt my back at 6months pregnant and due to the extra weight and strain of pregnancy, it couldn't heal.  Also, he kept flipping from breech to vertex after 34 weeks triggering false labor.

After he was born I was scared to become pregnant again any time soon and since I am madly in love with my husband, we decided to try a Mirean IUD.  Several of my friends used them and raved about them.
*Insertion was uncomfortable and took two tries.
*I spotted very lightly for a few weeks, then no problems for about 16 months.
*My period returned at 9 months postpartum, but as expected, was light, due in part to nursing & part to the IUD.
*When DS6 was about 18 months I started feeling sick. All. The. Time.
*I became terribly depressed.  I had been on anit-depressants in the past, but a very low dose, Now I was on the highest dose and it wasn't helping. 
*I would wake up in the night because I could feel tearing in my lower abdomen.
*When DS6 turned 2 I weaned him (yes, I nurse for a really long time) and that is when all Hell broke lose.
*I started bleeding, heavily, and excessively.  My periods would last 10-13 days and come every 14-17 days.
*After a few months of this I said, forget it, I'll just get pregnant and stop the bleeding.  I went in to have the IUD removed and the Doctor couldn't find it.

I went back a few days later when he had more time, he scoped my uterus and declared it vacant and healthy.  We assumed the IUD had fallen out after being disturbed a few days prior. 

I am often asked why I didn't feel it, but as a sleep deprived mom that is bleeding constantly, it could have fallen out in the middle of the night and I just was too tired to notice or assumed it was a clot.

There was no scaring on my uterus and no trauma associated with IUD migration, so it was safe to assume the IUD had in fact fallen out without me noticing.

I was declared healthy and the doctor wished me luck and looked forward to seeing me in a few months to confirm pregnancy.

The months crawled by, I had never waited more than 4 months to conceive and yet here I was several months later, still bleeding.  I had pelvic exams and ultra sounds every 6-8 weeks trying to find the cause of the bleeding and the sickness.  I was able to determine that the sickness was related to food, but try as I might, could not narrow it down to any specific item or group.

I tried hormones to regulate the bleeding, it didn't work.
I eliminated dairy and gluten to identify a root cause of feeling sick all the time.
I went on Clomid for a month to help me conceive.
I went super crazy from all the hormones.
I am fairly certain I had 2 early miscarriages.

A year later I finally went to another doctor, my OB/GYN was at a loss and suggested that maybe the root of the problem was not related to the female reproductive organs.  It obviously affected them, but encouraged me to seek other ideas.

My family practitioner, whom I should have seen months sooner, was also at a loss.  She ordered a CT Scan instead of an ultra sound.  The problem was found and identified rapidly.  I had 3 phone messages waiting for me from the radiology department, the actual x-ray tech, and my doctor by the time I got home from picking up my kids.

My IUD was floating around in my abdomen. 

I couldn't conceive because I was still on birth control.
I was bleeding constantly because there was a foreign object floating around my body.
I felt tearing because my uterus WAS tearing.

My OB/GYN rearranged his schedule, waived all his fees, and had the IUD removed 36 hours later.
  I was fully sedated for the surgery, and I was very sore for several days following.  Three small incisions were made, through my belly button, just below the bikini line, and a third on my stomach that formed a triangle with the other two.  Only the third one shows.  The incisions took a couple weeks to heal completely. 

He still can't explain how it migrated through.  The actual device he can understand as the uterus is a muscle that contracts, a solid object could be moved through, but a string?  He was baffled.  I was the 4th patient from whom he removed an 'AWOL' IUD, two had been placed by planned parenthood and the third had had some sort of trauma that could explain it.  I had no explanation.

Knowing I could now become pregnant, I weaned myself off the anti-depressant without any problems and quickly found I didn't even miss the 'help' they had given me in the past.

I was pregnant with DS2  6 weeks later.  Clearly it had no lasting effects on my fertility.

The sick feeling associated with eating has been identified as Acid Reflux.  High dosages of PPI's help, but do not stop the constant nausea.  It is wearing me down,  I struggle to maintain my weight during or between pregnancies because eating is so much effort and has massive consequences.  I dropped 15 pounds in 1 week because I was so tired of being sick that I just stopped eating.  I am also plagued with anemia, which I feel is related to the high dosage of PPI's disrupting my body's ability to properly digest nutrients.

This baby is due around Christmas.  My OB/GYN has agreed to induce me a week early so I have a bit more time to get an upper GI scope done to determine if there is other damage to my digestive system.

There is clearly no way to prove it, but I am convinced that the AWOL IUD and my digestive issues are somehow related.  They started at the same time and I never struggled with similar issues prior to the event.  I have found one other lady (via the internet) that has suffered from a long term lost IUD who also has serious digestive issues now as well.

UPDATE: I found help for my GI Issues!!  Click here and here for the story, and a kind of related post here.
and here is a feel good site with thousands of women with side effects

IF YOU NEED SOMEONE TO VENT TO or have doctors that are making you feel like you are making this stuff up, feel free to email me.  Honest!!  I don't mind, I felt so alone for such a long time, I see lots of googles that bring the searcher to this page, so if that is you, you are welcome to contact me.  Promise, not a creeper, just another mom.


  1. What a traumatic story. Thank you so much for sharing. What happened to you was not unusual. Good luck to you in the future.

  2. Wow, what an amazing story and you told it in such a way that wasn't rude and mean although you must have been experiencing a ton of emotions. I also had a "lost" IUD after it'd been in there for over 2 years. Went in on a Monday to have it taken out, the Nurse couldn't pull it out because it was STUCK. Had an ultrasound the next day and they found it had perforated the lining. Surgery was scheduled for early Thursday morning. It was a $14K surgery - I was beyond shocked (and that was for the surgery center only!). Blessed that I had insurance to help with some of it. I was looking at IUD stories because my sister just alerted me to this law firm: I haven't contacted them yet but it may be an option.

  3. I hope your surgery goes smoothly and that you have a speedy recovery. It's a frustrating experience, and I am fairly certain I am still dealing with the effects, but I just keep hoping we find an answer soon.

  4. Thank you for sharing your story!

  5. Thank you for sharing your story!

  6. I don't know if you still update this blog, but I wanted to let you know that I too have had an IUD perforate my uterus. I found out at the 2 week post checkup after having it inserted. I am beyond mad.

    I have had an US, two X-rays, and two MRIs. I am going to my doctors office tomorrow to have my pre-surgery talk and schedule the surgery. With all the doctors they have been very unconvinced of the traveling IUD. Even the MRI tech thought maybe I had pushed it out with a BM, what huh? That's because when they did the first MRI they couldn't find it.

    I wish more women were aware of this and I think the stats are skewed about how many women this happens to.


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