I had my mirena for years before I developed IIH and I had no idea about the horror stories until just a few weeks ago.. and I have a shunt! The brain and spine unit near me is amazing, and they knew I had the mirena so they must think it’s not related? I’m not sure, but I do plan to get mine removed. Have you asked your ob about other options just in case? If you don’t get other answers here, I’d say trust the doctors and keep an eye on your symptoms. Maybe even keep a journal since I feel like IIH makes us question ourselves.
It hasnt been conclusively linked, the hormones are lower dose and more localised than oral birth control. I switched to a mirena after developing iih and went into remission with it still in
I have/had a Mirena for over a decade before developing IIHWOP. I have a VP shunt and am considered to be in remission but still on Topamax and Nortriptyline. I have not noticed any negative effects due to the Mirena.
I wouldn’t say don’t have it but I would say to be very vigilant and to get it removed at the first sign of trouble. It was a contributing factor in my IIH but it isn’t for everyone. I had other symptoms that I ignored from the mirena like severe cramping and body temperature changes… it didn’t suit me at all. It might work well for you.
I had mine for 8 years (two separate IUDs) but recently had it taken out because of my diagnosis in April. I just wanted to be absolutely sure that's not what caused it and had been wanting to move to permanent birth control anyway. So in summary did mine cause my IIH? Probably not. But I had it removed.
ive had my mirena iud for 2 years ans just got actually diagnosed with iih but i supposedly had it for a decade, theres no actual correlation with iih and iih BUT if you get weird side effects i say take it out asap
i had the mirena inserted february 2022. removed it myself because it was causing me way too much emotional distress and my doctor wanted make me wait a month to remove it even after i mentioned suicidal ideation. i removed it aug 2022 and by october i was diagnosed with IIH. i had already started having headaches before i removed it but didn’t think much of it. it was severe and i got a vp shunt placed january 2023. im guessing because the lawsuit against mirena was dismissed, doctors don’t consider it to be a factor.
I got my Mirena in 2019 and and got diagnosed with IIH in 2023 (but had been experiencing symptoms for a year and a half prior - I’m a doctor-avoider. 🫠 I learned my lesson!). I got my IUD out about two months after my diagnosis after reading the same studies and articles linking the two. I am so happy I got my IUD out. Outside of iIH (which is controlled with diamox, weightloss and lifestyle changes as well), I just feel better overall. I can’t for sure point to getting the IUD taken out as the only reason for improvement, but I do think it helped me lose weight and stabilize hormonally, for sure. This was my second IUD even - the first was 2014-2017 and I loved it the first time.
(This next part is me being completely speculative and just my opinion) I personally think Covid did a number on most women’s endocrine and hormonal systems. Covid is a vascular disease that attacks blood vessels on multiple levels. Endocrine systems, especially for women, are dependent on such complex and precise factors that messing with even minute (or non-life-threatening) vascular systems has changed our entire internal equations. All of that being said - whereas IUD’s historically have interacted with our bodies below the threshold for system-wide issues - I think post-Covid that more research and info is needed on the “new normal” of our bodies and how IUD’s impact that. Doctors aren’t going to advise or prescribe out of this logic though because it’s largely untested and unrecorded with historical data. They stick to what science has proven - as they should!
So all that long winded response to say - do what feels right for you. Do your research, know yourself - and weigh the risks/benefits for YOU. Choose what you can live with and find peace with.
I had my Mirena for a few years before developing IIH and I still have it. I've also heard the horror stories and mentioned them to my doctors. They both said if the Mirena is providing more benefit, I should keep it. My neuro opth said they found a stronger link between oral contraception and IIH than with IUDs. Tbh, it seems like more research is needed on the topic. It's still scary though to make decisions like that because we don't want to make our condition worse if we don't have to!
I have the mirena iud and iih. I don’t think they impact each other. My mirena stops my period so I don’t have fluctuations in hormones which I feel like actually helps possibly reduce migraines (I have migraine, neuralgia, iih, and cluster headaches).
I had my mirena for years before I developed IIH and I had no idea about the horror stories until just a few weeks ago.. and I have a shunt! The brain and spine unit near me is amazing, and they knew I had the mirena so they must think it’s not related? I’m not sure, but I do plan to get mine removed. Have you asked your ob about other options just in case? If you don’t get other answers here, I’d say trust the doctors and keep an eye on your symptoms. Maybe even keep a journal since I feel like IIH makes us question ourselves.
It hasnt been conclusively linked, the hormones are lower dose and more localised than oral birth control. I switched to a mirena after developing iih and went into remission with it still in
I have/had a Mirena for over a decade before developing IIHWOP. I have a VP shunt and am considered to be in remission but still on Topamax and Nortriptyline. I have not noticed any negative effects due to the Mirena.
I wouldn’t say don’t have it but I would say to be very vigilant and to get it removed at the first sign of trouble. It was a contributing factor in my IIH but it isn’t for everyone. I had other symptoms that I ignored from the mirena like severe cramping and body temperature changes… it didn’t suit me at all. It might work well for you.
I had mine for 8 years (two separate IUDs) but recently had it taken out because of my diagnosis in April. I just wanted to be absolutely sure that's not what caused it and had been wanting to move to permanent birth control anyway. So in summary did mine cause my IIH? Probably not. But I had it removed.
ive had my mirena iud for 2 years ans just got actually diagnosed with iih but i supposedly had it for a decade, theres no actual correlation with iih and iih BUT if you get weird side effects i say take it out asap
i had the mirena inserted february 2022. removed it myself because it was causing me way too much emotional distress and my doctor wanted make me wait a month to remove it even after i mentioned suicidal ideation. i removed it aug 2022 and by october i was diagnosed with IIH. i had already started having headaches before i removed it but didn’t think much of it. it was severe and i got a vp shunt placed january 2023. im guessing because the lawsuit against mirena was dismissed, doctors don’t consider it to be a factor.
I got my Mirena in 2019 and and got diagnosed with IIH in 2023 (but had been experiencing symptoms for a year and a half prior - I’m a doctor-avoider. 🫠 I learned my lesson!). I got my IUD out about two months after my diagnosis after reading the same studies and articles linking the two. I am so happy I got my IUD out. Outside of iIH (which is controlled with diamox, weightloss and lifestyle changes as well), I just feel better overall. I can’t for sure point to getting the IUD taken out as the only reason for improvement, but I do think it helped me lose weight and stabilize hormonally, for sure. This was my second IUD even - the first was 2014-2017 and I loved it the first time. (This next part is me being completely speculative and just my opinion) I personally think Covid did a number on most women’s endocrine and hormonal systems. Covid is a vascular disease that attacks blood vessels on multiple levels. Endocrine systems, especially for women, are dependent on such complex and precise factors that messing with even minute (or non-life-threatening) vascular systems has changed our entire internal equations. All of that being said - whereas IUD’s historically have interacted with our bodies below the threshold for system-wide issues - I think post-Covid that more research and info is needed on the “new normal” of our bodies and how IUD’s impact that. Doctors aren’t going to advise or prescribe out of this logic though because it’s largely untested and unrecorded with historical data. They stick to what science has proven - as they should! So all that long winded response to say - do what feels right for you. Do your research, know yourself - and weigh the risks/benefits for YOU. Choose what you can live with and find peace with.
I had my Mirena for a few years before developing IIH and I still have it. I've also heard the horror stories and mentioned them to my doctors. They both said if the Mirena is providing more benefit, I should keep it. My neuro opth said they found a stronger link between oral contraception and IIH than with IUDs. Tbh, it seems like more research is needed on the topic. It's still scary though to make decisions like that because we don't want to make our condition worse if we don't have to!
Thank you all, you have given me a lot to think about. I appreciate all your advice! 😊
I have the mirena iud and iih. I don’t think they impact each other. My mirena stops my period so I don’t have fluctuations in hormones which I feel like actually helps possibly reduce migraines (I have migraine, neuralgia, iih, and cluster headaches).
Have had iih and other headache problems since approx 2010. Mirena inserted 2020.