Endometriosis Awareness: Mirena – Help or a Hormonal Mess?

This is the second post I’ve written today. Earlier, I typed out a post about endometriosis awareness events, and how this month especially, they frequently occur in medical practices or companies with a partial stake in endometriosis. Perhaps that post will come tomorrow as I feel it could use some polishing. 

This Is How It Starts…  

The inspiration for this post — ” Mirena® – Help or a Hormonal Mess? — is thanks to a portion of my recent hormonal blood work arriving in my in-box. All blood work ordered through my endocrinologist, neurologist and general practitioner’s offices become available to me via e-mail once the lab clears them. Due to some recent symptoms and long term endocrine issues I will not bore you all with, my endocrinologist felt it worth running a full hormonal panel. Honestly, when all was said and done, I don’t think there’s a hormone she didn’t check! 

The problem is — and we discussed this… at length — the  Mirena® interferes with hormonal testing. Considerably, in fact. 

For those familiar with my  Mirena® journey, this part will be old news and I’m sorry. Bear with me for a moment.

For those popping in thanks to a search term (Hello! Thanks for stopping by!), I had my first  Mirena® IUD inserted in April of 2007. I was terrified. After reading Internet horror stories, I had psyched myself into thinking I would pass out, bleed excessively, have a ruptured uterus… whatever could happen, it would pretty much happen. So I reached for two Tylenol #3 with codeine (a prescription pain medication), which effectively numbed any pain I may have experienced during the insertion. I went home, had a few cramps and slept the rest of the afternoon. I had purchased a box of extra absorbent pads (because I had read tampons would breed infection post-insertion and you bleed A LOT). But I only spotted a few time. I eventually gave the pads away. After that faint spotting and mild cramping, my periods stopped. I only had spotting again after my laparoscopy in 2008. And that was only a few times (due to the doctor moving my uterus to remove adhesions). 

It wasn’t all smooth sailing along the way. I had moments where I wondered if the Mirena was causing moodiness and cramping. It did increase my tendency to create ovarian cysts, which can become rather painful. The reason for my 2008 laparoscopy, for example, was due to a cyst that developed on an ovary. We watched it through ultrasound as it sat on my ovary for nearly a year. When it developed into a thick walled septated cyst — the kind that can develop into cancer. Naturally, my doctor was eager to get it out.

Shhh.. the “H” Word… and a New Mirena Comes to the Rescue

 

Because of my history and my pain level, I felt ready for a hysterectomy. I was already living without a period (this was all menopause was, right?!?! Ha!). What’s the big deal. Thankfully that gynecologist’s office had a nurse practitioner who had had endometriosis and had a hysterectomy at 30. There I sat, a naive but in pain 28 year-old. And she convinced me that the better option was to stick it out with  Mirena®, or try another reversible endometriosis treatment. And now I am glad I took her advice. 

But that brings me to 2013. I am on my second  Mirena®. 

The second insertion did not go so smoothly. 

Thinking it would be a cake walk (I had medical blinders that first time), I walked in sans defenses. And this happened – Mirena Insertion/Optic Neuritis (Don’t worry – the optic neuritis is not related to  Mirena®) 

We can continue now that we have that business out of the way…

As I was saying, my endocrinologist decided to run some hormone panels (read: every single hormone panel know to man). We knew that because the  Mirena® causes your period to stop — or amenorrhea, many of the lab values could off. Hormones like follicle stimulating hormone, estrogen and testosterone – to name a few, fluctuate depending on where you are in your cycle. That’s right. They rise and fall in the beginning, middle and end, and differences can signal problems –if you know where you are in your cycle. How am I supposed to know that when a) I don’t have a period, and b) when I did have a period, my cycles were anovulatory. Because I didn’t always ovulate, my periods were irregular, always heavy and lasted — on average — 2-3 days. 

So Does the  Mirena® Mess With Hormones? 

Unlike it’s non-hormone releasing cousin IUD, Mirena® releases synthetic progestogen – in the form of levonorgestrel –into the uterus. The manufacturer, Bayer Cross ®, stands firm that only a little bit of the levonorgestrel gets into the blood stream. 

Yet,there is an extensive hormone related list on their website of possible side effects. Bayer Cross ® Bayer insists that the following are experience by 5% under: 

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

I have daily search strings for “mirena and endometriosis,” “mirena headache,” mirena and migraine,” mirena weight gain,” “mirena and acne,” “mirena depression,” and the list goes on. These must be from the IUD’s hormonal component. You do not see this with the non-hormonal IUD. 

Personally, my migraines turned out to be related to my epilepsy. I’ve actually lost a ton of weight. And my skin is clear. I do not have a period, though. And as for cyst… while they do hurt, I have learned to live with them. As a wise doctor once told me, “That terrible, saying you’ve learned to live with the pain.” I told him I didn’t have a choice. I had a life to live and didn’t have time to wait for him to fix me. 

So, will I be getting it out? No. As long as it’s keeping my cycle at bay, it’s staying put. Of course, unless my endocrinologist calls Monday morning and says those test numbers are telling her a different story. But then again… like I said… that little thing in my uterus is making it hard of us to know when to test! 

 

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4 responses to “Endometriosis Awareness: Mirena – Help or a Hormonal Mess?

  1. I had my second Mirena inserted last summer and my doctors are convinced that literally the only effect it has on me is stopping my periods. It’s so refreshing to see an acknowledgement of the hormonal impact the Mirena can have. Compared with the unbelievably heavy periods I used to have for 10 days of the month, the side effects I experience from the Mirena are nothing. But, in an ideal world, I would rather not have the endless mood swings, the constant inflammation, inexplicable hair growth and an appetite that swings like a yo-yo.

    • Oh, at this point I think it’s only stopping my periods. But for now that will just have to do. The hair growth is wonky, and the mood swings (which aren’t bad anymore) are gonna come from the seizure meds anyway… and seizure meds kill the appetite… I can’t win with medicine!

  2. According to FDA, there have been more than 45,000 adverse events related to Mirena that were reported since its introduction to the US market in 2000. However, the manuafcturer failed to report a long list of complications to the doctors and educate women that there are could be complications.

    There were a number of lawsuites filed from women who experienced adverse effects of Mirena. One of the most dangerous side effects is when the IUD is dislocated due to migration out of the uterus (for example, into abdomen). In this case hospitalization and surgery are often required in order to remove the device. There are about 5,000 women who had this experience.

    When thousands of women were negatively affected how can we consider it safe?

    • Marina,

      I had coffee this morning with a women desperately seeking health insurance so she can obtain the UIC. In her words, that is her only option. For me, too, it became that or a hysterectomy.
      Doctors must stop caving to corrupt pharmaceutical companies. When they do, doctors become drug pushers and patients turn into walking, taking guinea pigs.

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