I have both endometriosis and adenomyosis. I had an IUD in for over six months and I bled every day and had very painful cramps everyday. I eventually became anemic and finally convinced them to take it out. I know it works for some people, but if it's not working for you, then definitely get it out. I instantly felt better when they took it out.

Ahhhh. You poor baby!

Do you know a hysterectomy is NOT a cure for endometriosis.

Who performed your surgery? Was it a vetted endometriosis excision specialist?

There are so many OBGYN'S out there who say they're specialists, and they don't know their heads from a hole in the wall.😢

I don’t have the Skyla, but the Mirena and I have had some issues with the strings going up inside (it’s still in an ok position but can cause some cramping) and it doesn’t prevent my ovarian cysts. I also have stage IV endo and adenomyosis as well. Ask your dr if you can take Orilissa instead of the birth control pills. My OB put me on the Orilisa to help stop the endo growth, it’s a pretty brand new medication though so many drs aren’t aware of it. The Orilissa gave me migraines at first and stopped my periods and it doesn’t stop cysts like hormonal birth control does and it can be super expensive, but my OB sent notes and my surgeries info to my insurance so they approved it. My endo starts growing back within months of it being removed so it’s possible yours has too. It’s at least worth a shot! Have your dr check the placement of your IUD Incase it’s moved and see if you can try the Orilissa. You can’t take birth control pills (hormoneal birth control) because the Orilissa and the hormoneal BC will cancel each other out. It’s worth a shot! I’ve had 4 endo removal surgeries and 5 cyst removal surgeries now, it’s frustrating and painful! Now we’re pretty sure my endo has grown into my bladder, instestines and other organs and is causing my Interstitial Cystitis (my bladder is bleeding and hurts every day like a bad UTI, makes me pee a few times an hour or more, causes a ton of kidney infections and causes urine retention requiring I wear a Foley catheter for weeks which is extremely painful). I wish you luck and pain free days ❤️

I had the Mirena put in after 2nd opp I had it removed within a year of having it I was in so much pain and spotting did nothing to stop my periods I found out my body doesn't like implanted contraception at all I'm on the pill

@A MyEndometriosisTeam Member, I'm so sorry you've been experiencing so much pain. I also feel that this disease has had a dramatic affect on my life -- my energy levels, what food I can eat, fertility options, sex life, etc etc.

I was also having weird hot flashes and chills for a time, and I have two theories about that: 1) my ovaries recovering from cyst/surgery etc (though my egg count is low and that's not going away), and 2) it could be a medication/bc/even supplement you're taking. I found that when I went off a magnesium supplement that I was taking for sleep, the hot flashes went away. Could have been something else entirely that helped with the hot flashes -- it feels like it's next to impossible to determine cause and effect for a disease like this -- but I'd suggest really looking at everything you're taking, not just the IUD. (Though I'd suspect IUD too. I'm still very wary of my own.)

Good luck to you. I hope you find yourself in less pain soon and continue to develop managing techniques. Who cares if you seem like a crazy patient! It's a crazy disease, and I've no doubt that advocating for yourself helps with doctors. You just have to. Sincerely, Victoria

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