Ask Endochick: Mirena Survival or Failure Options

Cierra asked: I’ve had surgery twice for endo. One in May of 2011 (laparoscopic) 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. The 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?

 

Cierra, your experience with Mirena is far from the norm. Actually, believe it or not, this sounds familiar. See posts: Mirena Removal Time and Mirena Insertion/Optic Neuritis Saga for reference. My very first Mirena insertion was a breeze. So coming into this last experience — I was gobsmacked! 

Having said that, the ordeal of having the thing inserted (two visits and the pain of a period in between) deterred me from having it yanked out. I waited the pain out (which for me was a 5-7 on most days). Of course (and this is important), we all deal with pain differently. My pain threshold may be higher than yours. My 5 may be your 7. 

You also mention it was inserted last Wednesday. It took a solid 1-2 months for my uterus to calm down. It was a gradual happening. With time, the pain subsided. I spotted for a few hours after the initial insertion, but have had nothing since (similar to the first time). But the discomfort and cramping was there for 1-2 months in some form. 

The insertion felt like labor pains. And then while eating lunch afterward, I doubled over needing medication. But these lessened considerably within a few hours with medication, and were much better the next day. I used heat and meditation (my mainstays). 

Consider a warm compress (heating pad on low or medium), warm bath, some over-the-counter pain reliever and keeping your bowels regular. The less clutter your have in your abdominal cavity to irritate your pelvic organs during this time, the better. 

You may be over the worst by the time you read this. Hopefully you are! 

If you have it removed, your doctor may suggest suppressing your cycles with a Gonadotropin-releasing hormone agonist (GnRH-a) medication. These act to limit or stop the production of estrogen, which is the hormone endometrial implants use as fuel. 

The three GnRH-a medications you’ll encounter are: Lupron Depot (injected), Zoladex (injected pellet) and Synarel (nasal spray). 

GnRH-a’s work by reducing blood estrogen levels to a post-menopausal level. This means you will experience the side effects of menopause. Unless you’re close to a natural menopause age (where your estrogen is already in natural decline), this can be a shock. Some women ride through six month of GnRH-a therapy with no problem. Others are completely miserable and even report lasting side effects. There are web pages of women taking litigation against drug makers. If you go down this path, I would recommend you do some research and make an informed decision. 

Your doctor may also suggest another course of birth control, too. Have you tried the continuous pill? Taking a pill of four months straight? Or taking a stronger prescription? Don’t be surprised if your doctor throws this option at you. If you’re unwilling to go down this road again and it’s the only option given, it may be time to get a second opinion. 

Your doctor — when all treatment options have been exhausted — may suggest hysterectomy. This is a personal choice that should never be entered into lightly. A hysterectomy is an irreversible surgery. Depending on your age and children, this may not even be an option you want to discuss. Hysterectomy is not a cure for endometriosis, yet many doctors continue to offer it as band-aid therapy. See: Endometriosis/HRT after Hysterectomy for Endo 

I know Jeanne over at Chronichealing.com has had great success with acupuncture. She uses it to manage different chronic conditions, not just endometriosis. If you’re willing to give that a try, it may be worth a shot. Head over to her blog (it’s well written and informative!) and search for “acupuncture.”  

 

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5 responses to “Ask Endochick: Mirena Survival or Failure Options

  1. Cierra – thank you for your post. I too struggled with “should I – should I not” get the Mirena for a couple of years. After I did, and like you, the insertion pain was worse than childbirth for me. I have a high pain threshold but this knocked me down hard. My cramps increased, blood clots increased, pelvic pain, back pain, leg pain increased exponentially. Doctors told me that it takes time for my body to adjust, but I couldn’t take it anymore. I wanted it out at 1 year but my doctor refused. I saw three more doctors before it was taken out – between year 2 and 3. In addition to the pain, I gained 60 pounds in 4 months. I’ve tried every other pill, patch, shot available but it made it worse for me. The only thing that seemed to help relieve “some” symptoms, or the intensity of them is heat, strict diet, and absolutely no sugar. I also have discovered a new love of Chiropractic services and acupuncture (electric needles).

    I hope that it works for you but yes – give it some time. At least 6 months.

    • Thanks for your comments, Km. It’s a shame your doctor wouldn’t just take it out if you wanted it out. To me, that’s a red flag and may mean time to look for another doctor.

  2. Pingback: Your Questions About Arthritis Pain Relievers | neck pain

  3. I had a good few months of “making do and “putting up with it” before my Mirena settled down. It was very very painful, I’m no stranger to pain, but it was some of the worst pain I’ve ever experienced, worse than the endo pain sometimes!!

    I was encouraged by my specialist to persevere and I am so glad that I did, it’s turned my life around. I’m even cycling with an electric bike now.

    Would I go through it again when this one runs out in three years time? Not sure yet, I like to think I might. I am however terrified of the next one being put in – this one was done under anaesthetic!!

    • Endohope, I, too, wonder what I’ll do next time. Since the first one was painless. And this last one was awful because they had to keep dilating me!…. I’m not sure I’ll have it in me to go through it again. Unless I’m drugged up. Possibly then. No periods is a major plus for me, though. A really big PLUS.

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