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Attention EDS ladies!

Oct 08, 2017 11:54 PM

Hi everyone.

I wanted to post this to make hypermobile ladies aware of the dangers of progesterone-based contraceptives such as the mini-pill and the Mirena coil.

Last year I had a Mirena coil fitted to help treat endometriosis, but didn't realise until afterwards that this was far from ideal. It turns out that the progestogens in IUDs such as Mirena cause the ligaments in the body to loosen, which for obvious reasons is very bad news for ladies with Ehlers Danlos syndrome. My joints were dislocating far more often and I was crippled with fatigue. My pain physio has told me that she's seen other EDS women who became wheelchair bound after having the Mirena fitted, and this was reversed after the IUD was removed.

I'm posting this here so you can be aware of the risks of using progesterone-based contraceptives if you're hypermobile. Not many doctors are aware of this and so won't advise you. I've since had the coil removed and my symptoms are much better - I just wish I'd known the above info before I had the coil fitted. If you have no choice but to be on progesterone-based contraceptives, it's important to research the type of progesterone you're taking, as some types are worse than others.

I hope you find this information useful. Please do undertake your own research and/or speak with your doctor if you feel you may be affected.

All the best!
Leanne

Oct 11, 2017 11:21 AM

wow, thanks so much! I'll keep this in mind if I ever have to switch.

Oct 14, 2017 8:46 PM

I don't know what that is and I don't really have control over my meds since I am 13 depressing right? I will keep my eyes out for it. (Hopefully not literally.)

Oct 15, 2017 1:49 PM

It's birth control medication.
You should try and talk to your doctor or mom or whoever is in charge of your meds right now so you have some say at least. I get that it's hard though I just turned 18 so I didn't always have total control over everything either

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