Considering an IUD for Endo: Nervous About Side Effects and Bleeding

I have had the same issue! In the past few years I have tried multiple different pills with varying dosages of hormones and none of them worked for me. I did try an IUD and it worked for about a year but then out of nowhere made my cramping a million times worse. The pain of the IUD insertion is awful as well. i now am going on my third year of having annovera. it is like the nuva ring but with a very very low dose of hormones. it works amazing for me but I know every body is so different! hope this helps and I wish you the best of luck💛

That's so interesting! I had the same issue with estrogen-based bc. Every nasty side effect you could think of. Turns out I'm just hypersensitive to estrogen, but progestin is just fine for me. Also the only reason we found out I had endo in my sinuses was because when my period stopped, so did the intense, clotted nosebleeds I'd had since I was a kid. I still get nosebleeds, but I'm not throwing three or four clots anymore. Gotta say, not my favorite thing in the world 😂

Clearly though, based on all the other resposes here, you are not alone in having problems. It just makes me wonder if it's worth the risk, especially when it sounds like people with endo tend to have a rough time with it. It just doesn't seem worth it for me personally to try!

I had tried what seemed like all oral birth controls and the ring, I started at 14 and the only reason I started was to regulate my heavy painful periods id get multiple times a month. Nothing worked, I was willing to try the mirena iud after giving birth to my son, I needed something I didn’t have to think about and it was my only other option for endo pain control so the doctor said. For the first 8 months I bled, it wasn’t the super heavy bleeding but I was told it was the body adjusting some people told me they bled up to a year. At 4 months in or so I had some severe pain that wouldn’t go away and when I went in they said my IUD had shifted, so they took it out that day and a week later I had to go back in to get it put back in again😣. I have a tilted uterus and a very tight pelvic floor so it makes the process more painful then it already is. I’m not sure if it’s true but I heard in Europe the standard is to get anesthesia for IUD insertion😳. Going through it twice in a matter of a couple months was awful and when the spotting didn’t stop I was just put on oral hormones. Obviously I’m that small 1% of people who has issues cause every other person I know that gets it loves it and has never had an issue so I don’t mean this to scare you. As far as bleeding goes I no longer bleed heavily, my bleeding with periods went away but I can still feel whenever I’m ovulating and get pain like my period was here. I just keep it in cause it keeps the bleeding controlled & so I don’t have to wear diapers all the time and so I don’t get pregnant. I’m still seeking out ways daily to control the pain.

It’s normal to be nervous and also perfectly okay! What I’ve shared is my personal experience that happens to be extremely negative, but there are extremely positive testimonials out there about the IUD as well. No matter what advice/experiences you decide to listen to I wish you the best of health. :)

Wow, that's awful!! I'm surprised because I keep hearing that the hormonal dosage is so localized that systemic symptoms are rare if they can ever happen at all. That said, what you just described is precisely what I've been so nervous about. There have been a few things recently where I was extremely nervous about something and everyone told me that it wasn't rational or it would be fine etc etc, so I relented and tried it and then exactly what I was afraid of happened and I got hurt. I think I'll be passing on the IUD for now at least... Thank you all for your advice and stories!!

There’s a chance that the endo made the experience worse. But I also ended up with cystic acne all over my face and back, terrible mood swings, bad depression, and in the end I never stopped bleeding. My skin was perfect beforehand and still hasn’t gone back to how it was almost 3 years later.

Wise - progestin only BC was actually the very first thing I tried and it made me crazy depressed. We discovered that apparently, my body doesn't take well to that. And also that's crazy that the tissue made it all the way to your sinuses! My prayers are with you, that cannot feel good... E11iefant - that sounds genuinely horrible. I already suffer from enough things to keep me out of school and work (migraines, depression, etc), I can't imagine trying to live with constant bleeding and overwhelming, intense pain like you described. If it was a week, or maybe even a month, that would be different and much more tolerable. But more than that, idk. Though the bra size increase does sound enticing, admittedly... Kaelin (and all) - do you think that endo made it worse? Like, without having endo would it not have hurt so bad or bled so long?

Getting an IUD was one of the worst decisions I’ve ever made. The procedure itself was incredibly painful even with my high pain tolerance. The after effects were even worse.

I have a mirena IUD and the first few months were quite literally the worst. Insertion sucked and was more painful than breaking my collarbone, definitely load up on pain meds beforehand. For the next three months I had a constant period and it was at least 10 times more painful than normal. I’m pretty sure my uterus was trying to reject it lol. But since last year I haven’t had a period at all and I feel great! Fun bonus, my bra size went from 32C to 32DDD! If you think you can handle the first few months, definitely try it, and if it gets unbearable you can always get it removed!

Make sure your uterus can handle an IUD before going through with it. My gyno was suggesting an IUD before I had surgery, but discovered during my diagnostic operation that an IUD would not be possible. If you haven't tried it already, ask about progestin birth control. no estrogen, no periods, and it helped slow my endo progression to a glacial pace. I do have severe, stage IV endometriosis, so it's all over most of my insides and in a few extra fun places like my sinuses. Idk what the approach is when you don't need a systemic treatment, but that's where I would start

My gyno suggested it, but understands my trepidation. She's okay with keeping me on the pill OR trying the IUD. She doesn't want to push me either way. She feels it would be quite safe, but she also thought the patch would work well and it did NOT so idk. New medicine comes out all the time, here's hoping something new is developed soon!!

AGREED! It does get frustrating, but I try to remember from their perspective they just don’t understand. That’s why a doctors advice is probably going to be the best bet. And yes, I need to make an appt, if I end up trying it I’ll let you know!

Birdi, thank you for sharing too! That info really helps. Doesn't sound too promising. The Syeda seems to help minimize cramping and endo pain, but not get rid of it entirely. I'm not sure what the next step is, but I am still not so sure if it's an IUD!

I appreciate that!! Pretty much all the advice I've received from friends (and my boyfriend 😡) has been "oh just try it, it can't be THAT bad" or "it works for me/my mom/my sister/etc so it should work for you!! Oh? What's that? Oh yeah, I/she/they don't have endo, but it should be fine for you" or "it's not a big deal, you'll be fine. You can always get it taken out" I'm just so sick of hearing those things, so thank you so much for sharing! Let me know if you end up trying it and how it goes. I'll try to remember to do the same for you 😊

I’ve also been debating getting an IUD but I am scared for the same reasons! I also take syeda currently and have found it works the best. However I use it to skip periods completely because if I were to get one the pain is just unbearable and my doctor advised me that with endo you should never bleed because that is what will cause more abnormal tissue to grow. So yeah my main concern about getting an IUD is that it won’t work to stop the bleeding, I’ll be in pain all the time, and I also don’t want more abnormal tissue to grow and need a second surgery. Sorry I don’t have an answer for you but I thought I would share since I’m in the same boat!

I wanted to use birth control for endo and tried the pill and nuvaring, but they both made my heart hurt. I've been on the kyleena for about two years and haven't had much issue with it, but now that it's towards the end of its life cycle, my periods and cramps are comming back. It never really got rid of my endo pain completely though, so I'm considering surgery now.