Life with my Mirena

I have had the Mirena for a little over 2 years now.

For controlling my endometriosis pain, I give the little critter an 8 out of 10.

For controlling my bleeding, it gets a 10 of 10 (no periods since its insertion!!).

Now…. there is a downside. You may be wondering “A downside? This sounds like Heaven!” But there is one: PMS. Having anovulatory cycles, I know when I do ovulate because of the awful PMS symptoms. While the Mirena helps some, I still have pelvic tenderness, emotional ups and downs and exhaustion when I do ovulate.

My problem, since I don’t menstruate and my cycles are whack to begin with, is that I can’t predict when I’m going to be on this crazy roller coaster.

Putting that small fact aside, I do love the Mirena. But I was told it would eradicate further endometrial implants from growing in places they were not wanted. I was told I would never need surgery again as long as I kept this little bugger in me. Can you imagine my surprise when I needed surgery a year after insertion because the implants grew back!

I just want women who come across this blog – this post! – to know, for me at least, the Mirena has provided wonderful relief. No periods! No cramping! But it’s not a cure for endometriosis. It will not starve off implants.

Why is this? I mean, it takes away that dreaded period. Isn’t menstruation the source of all evil when it comes to this disease? Nope. That’s right. Nope. Endometriosis is fueled by estrogen. While the Mirena uses a synthetic progesterone, it does not shut down estrogen production.

Now I am not sure if it can slow the progression or not, I am not a doctor nor have I researched this extensively. In my opinion, drug company sponsored research is biased.

All I do know, for sure, is it works for me. I can control the pain I do have from this disease with, often, non-medical treatments. For me, diets and exercise have been life savers!

Now I’m just rambling – and I feel I need to since I haven’t posted in ages! But I will go now because 1) my lunch break is nearly over and 2) I really have nothing else to say.

If you are actually still reading this blog, especially since it’s been in hiatus for ages, thanks!

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10 responses to “Life with my Mirena

  1. Oh I am with you there… I had a blessed 2 years sans pain and bleeding with my mirena (although the PMS was hard to connect to my cycle for a while with not having the usual cycle!) But, as the implants grew back the pain returned (though very little bleeding thankfully). I didn’t need surgery until 4 years after insertion (or rather, I maybe needed it earlier, say after two years but it took that long to get to the point of surgery as the doctors were insistent nothing could be wrong *sigh*) No, Mirena is no “cure”, but it certainly helps not having the same levels of pain and bleeding… of course I’m having mine out soon to start TTC, so I may be reminded just how great the mirena was at that once I no longer have it :os

    Glad to hear you found a certain level of relief from having a Mirena!

    • It’s ridiculous that it took them 4 years to go back in! I, too, love my Mirena because I had horrendously heavy periods. It made me anemic and the pain left me a drugged up mess for days on end (2 Tylenol 3 w/codeine and 2 Midol or Pamprin Maximum Strength). I’m sure on that cocktail I was an overdose waiting to happen.

      BTW – I love the necklace I won from you (on Jeanne’s blog) but it broke 😦 I can’t fix it, either. Did get some nice compliments, though, and it was so unique!

      • I’ve had surgery twice for endo. One in May of 2011 (laproscopic) and one in June of 2012 (robotic). My dr suggested trying the mirena since the birth control pills weren’t doing their job. At this point I’m willing to try anything. I had the mirena inserted last Wednesday, which by the way was the single handed most painful thing I’ve ever been through. Thankfully, my sister told me to bring a driver, or else I would have curled up in my car and cried for hours. Unfortunately, I’m regretting the decision. I’m still uncomfortable. I can still tell its there. I’m still having pain, it seven making my legs hurt now. IThe dr’s keep telling me to give it time, but I’m miserable and I am considering getting it taken out. Any other treatments options suggested?

  2. Amanda and Endochick,

    I am glad you found a treatment method that has provided you with some relief. 😉

    Jeanne

  3. Hi Endochick,

    I tried Mirena and similar products and they just wouldn’t take. I had spotting for 6months before I just gave up on them. It was hard cos I was left with little other choice – had tried all the other suggestions already and none of them seem to agree with my oversensitive body.
    I was left with trying wierd and often non medical methods which I must say has been a blessing in disguise 🙂
    I have no PMS, no headaches and barely any pain from endo now after 4 months of using natural methods. It is great cos I know my body is healing itself from the condition, rather than me simply dealing with symptoms!

    Love the blog! Please keep writing and sharing!

  4. The “PMS” symptoms at ovulation may result from an increase in pelvic blood flow at day 12-14 that is not stopped by Mirena. The usual source is some abnormal pelvic autonomic nerves that “encase” small blood vessels. These grow back after an injury – often during labor, but also caused by sustained constipation. This is more likely if you are bottlefed or have problems with toilet -training. Often the first thing you know about it, is when you have your first period – which is intolerable etc. etc.

    Increased blood flow presses on these pelvic autonomic nerves and causes widespread activation of autonomic nerves which we call “PMS” – which you know more about than I do.

  5. I’m only 19 years old but I was diagnosed with endometriosis when I was 17. They put me on the depo shot that causes an early menopause for 6 months and once they took me off of that they have me the surgery and the mirena. I’ve had it for almost 3 years now and at the beginning it was wonderful but these past few months the camping has started back up, and now I feel like the cramping is even worse than before the surgery. My doctor is even considering the surgery again here soon. Lately I’ve been extremely moody, losing weight randomly, my breasts seem to be growing, and I have weird cravings every now and then. People started teasing me that I was pregnant, and now I’m actually starting to worry that I am. Me and my boyfriend have unprotected sex but he pulls out every time. Is it possible to get pregnant even with the low chances of getting pregnant with endometriosis and the even lower chances of getting pregnant with the mirena? I’m completely freaking out to the point of me actually taking as pregnancy test tomorrow. I thought that I would never have to worry about this but now with someone telling me that I’m pregnant every other day I’m getting scared. I haven’t gained any weight at all, I’m like 150 pounds but honestly all the weight is in my boobs and butt. Like I should be able to tell if I was pregnant because I really do have a small tummy. If anyone could help me out and tell me if this is normal I would really appreciate it.

  6. Hi Taylor. I completely feel your pain. I’m turning 22 this year and was diagnosed with endometriosis when I was 15 (had my first operation to remove the growths when I was 15 as well). I had very heavy and painful periods all my life and the depo shot did help a lot but it didn’t stop the growths and gave me migraines and made me break out badly. I’ve been on every type of medication and my Dr put me on Mirena last year June. It worked for the first 2 months but since then the heavy periods came back, I’m still in a lot of pain, and started having migraines again since January. I have constant periods (it goes for 2 weeks straight, stops for 2 -3 days and starts again), and when it seems to get lighter it turns into this thick, brown bleh goo which really doesn’t smell nice! I’m too embarrassed to sleep with by boyfriend due to this even though he’s very understanding and everything. I’ve also had those weird gaining weight problem. Sine I had the mirena inserted I’ve gained about 10 kg! I’m also fed up and have been thinking of having my ovaries removed to stop the estrogen so I can stop the growths, I’ve already had 2 operations and I don’t want more. I’m tired of worrying if I’m pregnant (even though we use a condom and the mirena), I’ve even started to think I have cancer because of the brown goo even though both of my pap smears were negative. I’m almost too scared to drive these days since my blood pressure is really low due to the constant bleeding and I’m permanently tired, I just start feeling faint with no warning.

    Good-luck to all suffering from this, if anyone has any advice it will be much appreciated.

  7. I am a sufferer of endo for over 13 years. I have had 5 laparoscopies ( most recent in June) where Mirena was inserted. I have been feeling ok until recently. I am back to pain on both lower ovary sides and just feeling blah…..feel like I’m back to square 1. I’m also on the pill to keep my ovaries not so active. We have 2 children and don’t want anymore. Anyone have any advice as to next step?

  8. I had 14 operations to have my endo removed. We are blessed to have a little girl and I make use of the Mirena as well. Only thing that scares me is that everybody on this blog is experiencing the same side effects than me. I am considering to have the Mirena removed but then what. Do I really want to have pain again ( it still forms part of my day just not so intense). Do I really want to go through all of this again and if I have it removed how do I stop growth of endo? all other treatments didn’t do much.

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