When Birth Control May Do More Than Just That

Other than a couple of questions here and there on social media, I haven’t really mentioned the chronic pain that I have been experiencing for the last 2.5 years.

It started in the summer of 2010, and I originally thought that I had a herniated or slipped disc in my neck/back. By the time the cooler weather came around, the pain was not as bad, so I kind of wrote it off as changes in the weather, humidity, and in my body, as I approached 40.

The problem is, the pain never fully went away. It retreated occasionally, but never completely, and never for long.

During this time, there were also increases in other issues, such as skin, scalp and hair issues (eg: eczema, hair thinning) and slight weight gain. All of these have ‘normal’ reasons, such as approaching and passing 40, allergies, diet…


I’ve spent many days and nights wearing hand and wrist braces, thinking it was just really bad carpal tunnel.

I’ve changed to a standing desk, thinking it might just be really bad tension in my muscles caused by how I sit at the computer.

I’ve upped my exercise, thinking it might be rheumatoid arthritis and that it was best to keep moving.

I’ve tried OTC pain relievers, thinking if I could just get some relief, my body might heal itself.

I’ve added various vitamins to my diet, thinking it might be perimenopause.

I’ve gone shampoo-free, hoping to alleviate scalp issues.

I’ve changed my diet, trying my best to follow an anti-inflammatory diet, thinking it might be a food allergy, issues with wheat/gluten…

Until two months ago, I didn’t have health insurance, so I’ve prayed daily for healing and (/or, at the very least) comfort. I’ve laid awake many nights worried about what was wrong. It’s become a part of my daily life.

Last year, at Randy’s prompting, I started keeping a journal – tracking the pain: the dates, levels, locations. We knew that when we saw a doctor, in order to have a good grasp on things, and help along a diagnosis, we needed to have a sense of when things were happening.

Eventually a pattern emerged.

Almost three years ago, I got a Mirena IUD. It basically stopped my periods, but in my journaling, I realized that the pain always increased around my usual cycle.

It didn’t make sense to me, at first, that they might be related, but I searched the internet for correlations, trying to figure out if the IUD created symptoms, or exacerbated symptoms that were created by other issues.

In other words: was I already struggling with health issues? Or was it possible that the IUD was creating them?

My searches didn’t turn up much. I still felt at a loss to explain what would have brought on such a sudden, chronic pain.

In the last few months, I’ve realized that my search terms were off. I changed my search from searching the internet for “IUD chronic pain”, (which brought up a bajillion posts on chronic pelvic pain) and changed my search to “IUD autoimmune issues”.

And I found that there are many women who have been dealing with the same types of pains and issues. Some of them found great relief upon the removal of the IUD, many, after having had testing (and even possible diagnoses) for RA, MS, and many other autoimmune diseases.

After a few months of a mild decrease in severity, my pain has been back in full-force for the last few weeks, and the last few days, it has been worse than I can remember in awhile.

I’m making an appointment with my doctor, and I’m planning on having my IUD removed. It may turn out not be the root cause of my pain, but it is the simplest test I can do at this time.

Honestly, I’m hoping that it really IS just the IUD.


  1. I hope that for you, too. The bottom line seems to be, we have millions of years of evolution, and only a few hundred of the scientific method. Seems likely that the system in place has more data. Hope you feel better soon, honey. :)

  2. Sooo sorry you are having pain! As someone living with lupus and fibromyalgia, I know how overwhelming chronic pain can be. It might be worth it to do some Internet research on fibromyalgia trigger and tender points if the IUD removal doesn’t resolve your issues. Also look into lupus symptoms as there may be a link between lupus and estrogen.

    When all is said and done, I pray it is a simple as removing your IUD. No one deserves chronic pain.

    • http://Karla says

      Kim – Thank you!!

      I forgot to mention that I had looked into fibro as as well. As Katherine mentioned, I’m hoping I haven’t created some sort of secondary issue AI issue…

  3. Wow! That is totally intense. Keep us updated. It’s good to know these things!

    • http://Karla says

      I’m hoping it’s not created anything secondary. I just hope it helps someone else experiencing the same sorts of things!

  4. As a sufferer of multiple autoimmune diseases, the first of which was endometriosis, I BEG you to get the IUD out at soon as possible. (I know you’re already doing that. I just want to underscore the rightness of your decision.) AI disorders tend to cascade once initialised by a catastrophic event (car accident, surgery) or initial AI disorder. Your track record with your IUD mirrors my early years of difficulty with endo and with a chronic pain that my OB/GYN _swore_ was in my head. Until years of tests proved it wasn’t.

    Getting rid of the IUD may (and I hope will) clear up all your problems. But just remember this, please. If it doesn’t, you ARE NOT CRAZY.

    • http://Karla says

      Katherine – Thank you, for your support.

      I’ve considered Fibro (just realized that I forgot to mention that in my list of things I’d thought of…)

      I am so ready for this thing to be out!!

      • Well, I’ve got secondary fibro–that’s when you have fibromyalgia because your AI issues (in my case RA, Crohn’s, endometriosis) basically turn your pain sensors on and they never shut off. It’s possible–and I hope that this is NOT the case with you–to have fibro caused by the IUD rejection.

        If you’re having tender point pain or any type of nerve pain, let your physician know at the time you have the IUD removed. They’ll be able to monitor and Rx accordingly.

        • http://Karla says

          That’s my fear, Katherine… that I’ve created secondary issues that won’t go away…

          I’ve seen some talk about ‘detoxes’ after it’s removed (there is silicone in them, that gets into the body [breast implants!])

  5. http://Miriam says

    Karla! I’m so glad you posted this! I did a search for Mirena and high cortisol levels, because since August, I’ve been to the ER five times for high blood pressure/shortness of breath/chest pain/a feeling of being strangled. Those doctors not only refused to do any hormonal testing, they decided I needed to see a psychologist as its “all in my head.” I have insurance, but I was obviously getting nowhere, so I paid out of pocket to see an endocrinologist who listened to me. My hormone levels were literally crazy: he said he does dozens of tests a week, but he hasn’t seen a case like mine for six months (very flattering, right?). :) All this to say: we know there’s a problem, but not what could be causing it. Reading your story made me think: I’m getting this IUD out ASAP! I see that there are definitely links to the Marina and my problems. I hope it works for both of us: I’d really love to not be clinically insane!

    • http://Karla says

      oh Miriam! How frustrating — we get told it’s ‘in our heads’ too much! I remember being so relieved the first time a doctor didn’t discount my constant exhaustion to ‘just being a mom’…

      I hope we both get our issues resolved! My issue make take some time, but hopefully yours will resolve quickly. (You may want to do a search on “Mirena Crash” — there are some people who have temporary issues while hormones return to normal. I’ve read some really helpful info on that)

  6. I had a Mirena for three weeks when they first came out and it was the worst three weeks of my life. You know the things I’ve been through the last couple of years, so I don’t say that lightly. I hope you and your health providers can get to the bottom of it so you can feel better and BE better!

    • http://Karla says

      I’m so glad you were able to quickly determine that that was the cause of the issues!! I can’t shake the thought that so many are probably having similar issues but aren’t putting it together, and are just suffering through it…

      Thank you, Dusti — I’m so anxious to get this resolved.

  7. Have it removed as soon as possible. I can’t tell you how awful I felt with that and missed out on the first year of my daughter’s life because it was making me depressed, I was suffering from menopause symptoms (hot flashes/sweating/not sleeping), and the worst panic attacks. The day after having it removed, I felt human again. It makes me so sad that I missed that first year really being with and loving my daughter because of the depression.

    • http://Karla says

      I’m sorry you had such issues too, Amy. I spent time researching it, before I got it, but I’m pretty sure I took the attitude of ‘It won’t happen to me’ … :/

      I’m glad you were able to figure out what was causing your problems!

  8. Oh my goodness I had no idea IUDs could cause so many issues. I kind of had it in the back of my mind that I would get one once I was done having kids since the pill makes me nauseous all the time. Guess I’ll make sure to do more research before I do. I really hope getting it removed clears up your issues.

    • http://Karla says

      I know a lot of people who have had no issues. But it’s definitely something to keep in mind in case you do start noticing changes physically and/or emotionally.

      Along those lines, I also wonder how many people do have issues from it and just don’t relate it to it.

      BC shouldn’t be so difficult… :/

  9. I’ve heard of many IUD side effects, for sure. I hope your removal solves all of your problems!!

  10. IUD’s are the devil’s workshop. The worst thing modern medicine has ever produced. Here’s hoping that getting the thing out of your system helps.

    • http://Karla says

      Ditto! I’m pretty sure it’s the root of most of the issues/symptoms I’ve presented with, Debbie and can’t wait to get it out!!

  11. I found this post through someone else’s blog who had issues with an IUD. I’m glad I decided not to go with the IUD, but I’m starting to think that the birth control I’m on (Nexplanon) is no angel. I’ve been having so much wrong with my body, including chronic pain that I barely go through a day without being in pain. Just yesterday I was in so much pain that my manager told me to get to a doctor. Of course, they can’t find anything, but I’m going to my GYN and gonna ask if this could be the culprit. If it is, then this thing is coming out early, damned the consequences.

    We go through so much to try and prevent pregnancy and/or regulate cycles and honestly I’d rather be pregnant–I was less miserable.


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