Endometriosis, Lifestyle

My Experience With an IUD for Endometriosis

my experience with an IUD for endometriosis

Curious about what it’s like to have an IUD? In this blog, I’ll share my experience with an IUD for endometriosis (endo), which I can sum up in just one word: painful. There was not a single pain-free stretch of time longer than one week in my entire yearlong experience with an IUD, specifically the Mirena IUD. 

From the very beginning, my IUD experience was excruciating. I will say I’m extremely grateful that I was asleep when I had it inserted (I had it placed during laparoscopic surgery for endo removal). I’ve heard how painful it can be to have it placed, and I was fearful of that. 

But while I didn’t feel anything when it was inserted, I sure felt a whole lot in the weeks after. Let me say, recovering from an endo surgery and trying to adjust to this foreign object in my body that felt like my body was constantly trying to eject, was probably not the best idea. For the first month after it was placed, I had constant pelvic cramping and vaginal pain. I was on the floor sobbing, moaning, and unable to move from the cramps—no exaggerations. It was really hard for my fiance and my parents to see me that way.

I even ended up calling for an ambulance in those first weeks because the pain was so bad and I bled a lot. I gave myself my first POTS adrenaline dump where my heart raced and both of my hands went numb and tingly. But at the time, I worried I was bleeding internally or had a blood clot from surgery, so I went to the hospital. Thankfully, all turned out well, and the emergency room doctors told me that my body was still trying to heal and adjust to the IUD. 

So why didn’t I just get the IUD removed in the first month when I was in so much pain every day? Why didn’t I end my experience with an IUD there?

It’s because I felt like I had no other option to slow down the return of my endometriosis. I’d tried and failed so many different forms of birth control. In fact, I only had one other oral birth control pill left to try. And what if that didn’t work, too? What if I couldn’t tolerate it? Did that mean I had no other defenses to help endometriosis pain and its dreaded return?

But here’s the thing that really drove me: I want to have kids. I want to preserve my fertility as best as I can until I’m ready to have kids, which means delaying the spread of endo as much as possible. And after having two surgeries for endo removal (plus a cyst removal), I was terrified of endo coming back strong within three years and impacting my ability to have kids. I thought, if I can just hold on as long as I can, it’ll slow down the return of my endometriosis.

So I endured the pain and breakthrough bleeding. My doctor had told me that the first three months would be the worst, and once I got past that milestone, my body would be better adjusted to it. 

And I will say, he was right about that. At three months, I didn’t have the excruciating pain every single day anymore. It happened a few times a week. And my periods had slowed down to just some light spotting each month, which gave me the reassurance that the Mirena IUD would work to slow the return of endometriosis. 

I thought: This is definitely an improvement from the first month, and while I’m not pain-free, it seems like something I can deal with for now. So that’s what I did. For months. 

But then things took another turn for the worse around six months. I started to cramp and bleed every day again, and this lasted for six weeks. I even had tender breasts and headaches, and I felt like my hormones were all over the place. I had cramps on my right side that radiated down my leg. I had a dull pain on my left side that extended to my lower back. I was struggling to manage my pain.

When I went to my doctor, she couldn’t see or feel my IUD strings. I panicked. She immediately ordered an emergency ultrasound to see the IUD’s location. Had it migrated? Was that the cause of the pain and bleeding? I rushed to get the scan that same day.

But the IUD was in place. That was shock number one, although a happy one. The second shocking thing was that I had an ovarian cyst on my left ovary that was almost 3cm big. 

Now, that’s not super huge, but it may have been big enough to be causing the left-sided pain. I was sent home and told we’d watch the size of it. That was when I read on my own that IUDs can cause ovarian cysts because they don’t stop ovulation. 

Great. So while I was managing one issue, namely, endometriosis, I was giving myself another issue: ovarian cysts.

Flash forward another couple of months and we’re coming up to a year with the IUD in. By this point, my cramping never got any better, although the continual bleeding did. But my mental capacity to handle the pain despite the drastically lighter periods was dwindling. I knew I didn’t have much fight left in me to live with this cramping. After all, I got the laparoscopy to get pain relief, and it felt silly to still be living in terrible pain to try to prevent endo pain from coming back. I had to try something else besides an IUD for endometriosis. 

So I went to a new OB-GYN in New York City, and she immediately ordered an MRI to recheck for endometriosis and the cyst’s size. This time, the cyst had grown to almost 6 cm instead of shrinking or resolving on its own. 

That was kind of the last straw for me. The IUD had to come out. 

Which brings me to my next super fun adventure in my experience with an IUD. The removal. 

When I went in for my IUD removal appointment, I was told I’d feel some pain and pressure, but that it’d be super quick. The whole thing would take less than five minutes.

Well, *insert narrator voice* it did not take less than five minutes. It took almost a half hour of my medical provider trying and failing to find the strings, all the while sticking tools up my girl business and pinching my cervix. I was literally in tears, sweating, and gripping the table with an iron fist. Eventually, I asked her to stop because I couldn’t take the sharp pain anymore.

So, she recommended I undergo a hysteroscopy, where they’d put me to sleep and go up into my cervix with a small camera to find the strings and pull the IUD out. I was super upset, not only because I endured that pain in the office for nothing but also because I’d have to pay for another expensive procedure.

But I had the hysteroscopy done and it ended my Mirena IUD experience. And once the IUD was out of me, all of the cramping I’d felt had magically gone away. I felt so relieved that I’d made the right choice. A part of me was worried that the pain was from something else, like endometriosis or the cyst. But that specific, whole-pelvic cramping and vaginal pain were because of the IUD, and now they were gone.

I wish I would have gotten the IUD removed sooner. While it did lighten my periods to barely anything (which, I’ll admit I miss!), it just didn’t agree with my body. Living in severe pain to try and prevent the reoccurrence of another pain is no way to live when you can help it. 

my experience with an IUD for endometriosis

But just because I had a negative experience with an IUD for endometriosis doesn’t mean that you will. I know two people who have IUDs and they work really well for them. Like all things, every body is different. You have to try something to see how it uniquely affects you. I’ve heard this before and it really is true: Finding something that works for managing endometriosis pain is trial and error.

Looks like I’ll still be over here trialing and erroring. Anyone else? Say hello in the comments below! And let me know if you’ve tried an IUD—did you have a positive or negative experience with it? I’m curious to hear. 

If you haven’t already, read about my journey with endometriosis next!


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4 thoughts on “My Experience With an IUD for Endometriosis

  1. I’m currently in the emergency room waiting on a doctor. I had the mirena IUD inserted through Hysterocopy by my gynaecologist trialing a new hormone treatment for endometriosis after many other failed attempts. I’m in the worst possible pain, severe cramping and horrible pressure that hasn’t let up at all since I had it inserted a week ago. I have been in the fetal position, bawling my face off, heating pad on and no relief from any pain meds. Im terrified if I don’t take it out it will cause more problems now that I know more about it and if I do take out then I’ll be back to square one and don’t know what else there is to try. Im at a total loss

  2. Hi! I have endo and POTS as well and like you said, trail and error. I want to share this amazing resource I found. It’s called The Period Repaid Manuel by naturopath Laura Briden. She talks about how endo is made worse by inflammation, so if you want to slow the regrowth eating to prevent inflammation is important. That’s my current project and I wanted to share the info since so far I have not found a gyno who has suggested this.

  3. Thank you for sharing your story. I just met with an endometriosis specialist/surgeon and am planning to get my first excision surgery soon. They strongly believe I have endometriosis due to many years of debilitating periods etc. I got the Mirena IUD about 2 years ago now and like you have had non-stop pain ever since. Not any bleeding, but cramping, lower back pain, pelvic pain, glute pain, bladder pain, and leg numbness. I am debating on getting it removed during surgery or possibly seeing if removed endo tissue resolves this? This is a hard decision for me because I’m not even certain I have endo until the surgery happens.

  4. Endometriosis is so horrible. I am so sorry you went through this. I am with you on the trial and error-ing, but it’s so frustrating that we have to experience such intense pain to figure out the ‘errors’! I have two endometrioma cysts and been advised to have a hysteroscopy to check on my endometrial lining. The gynecologist suggested I go on on the Mirena IUD at the same time as the hysteroscopy procedure and said that the Mirena will ‘shrink’ the cysts and endometriosis in my womb.

    I am not sure if this is the better route than getting a laparoscopy and *then* trying out the Mirena. Who knows…would love to hear more people’s experiences on the IUD, particularly if anyone has experienced endometrioma cysts before going on it!

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