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Hello, I know this group is probably to discuss treatment and pain of IIH which is understandable. However, I was wondering what everyone uses in the form of contraception? When I was diagnosed I was taken off my pill and ‘unofficially’ told that it was likely this that had caused it, but there isn’t enough evidence and they couldn’t confidently say. They did make very clear that IIH is most commonly diagnosed recently with women on various birth control aids with that being the only link between us. They also told me that I was no longer allowed any contraceptive pill and that this is the same for other women with the condition that come through the hospital. I wasn’t given any guidance as to what I can use instead and I am not comfortable with only using condoms. I wondered if anyone has any advice at all or can tell me what they use? I’m assuming others have also been told of the link between the pill and IIH, if not I would please do some research as it is incredibly risky, a lot of women aren’t as lucky as to be diagnosed before it has reached very harmful consequences. I have seen that some websites suggest progesterone only pills are okay and that there is a link between the estrogen in the pill with the IIH. However, my doctor is very thorough and I’m sure he would’ve mentioned this if it was possible as I was quite concerned to be without it. I am 21 with my partner and children are not what we want yet, the risk is still there. Some suggest the mirena coil as it has little hormone but again, I have seen plenty of women also getting IIH with that. I’m a bit stuck with what to do, could some women please let me know what they use?
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