hi Alane, how are you feeling today? I am pleased to know that you will be getting the mirena out of you soon - take life easy for a few days after removal, so as not to strain anything, and come back to us if you get any more odd symptoms crop up or if you are worried about anything in the meantime, or after removal.
There is supposed to be a class action going on in the US but i dont know how or even if it is still progressing. I am english so dont know much about how things work in the US. So hopefully someone else can help you with that. I know that over the past months there have been quite a few people angry enough to ask about a clas action on these forums - people who often had had terrible problems with the IUD escaping into the body cavity, and needing a major operation to get it out, which is not only a traumatic thing to go through but costly as well. or worse - not actually being able to get the iud out at all, due to where it has positioned itself - imagine that!! and they continue to get all these side effects but cant get the mirena out!!! we have had it bad, but it is mild compared to those poor women! When i read stories like that, my heart goes out to those people and i feel very grateful to be alive and reasonably healthy despite my hormone problems.
You can however contact the FDA on the web - they have a form where you can report side effects, so the more Americans that do that, the more info the FDA will have to investigate, which may help in the long run, though i am sceptical. Drug companies have so much power, and it is not as if it is just mirena - all synthetic hormones can have life threatening side effects, there have been 2 people that i have read about on these very forums who have died as a result of synthetic hormones, one poor girl through Depression brought on by mirena, which the doctors refused to believe was at fault, and another who dropped dead with a blood clot. I have also known people die from the pill and other have horrendous side effects, as well as all these people on here, yet as a society we have come to accept it as something that only happens to other unlucky people - until it happens to us lol. here is the link for the fda...
the other thing is that doctors do have access to knowledge of the common side effects, as well as clot risk etc, it is in their prescribing information, yet they do not tell us. the following link is a pdf doc from the mirena makers that doctors are given. it doesnt mention every side effect but mentions enough that they know about, which we are generally NOT told about by the doctors. So who is more at fault? a drug company whose nature it is to make profits, has obeyed the letter of the law and states their current knowledge of their own product on record for all to see if we care to look? or the doctors who have first hand access to this knowledge and do not pass it on to us, the patients? I blame the medical profession slightly more, in so far as they are the ones we are SUPPOSED to trust lol....I think they both have to hold their hands up to this though, the doctors for not telling us, which is negligent, to my way of thinking, and the drug company which by its own admission has not done any research at all in certain areas of mirena usage. A cynical person might think that they have not conducted certain conclusive tests because they have a pretty good idea that the outcomes of the tests might not be favourable, and once they do a test, by law they would have to publish the results. that wouldnt look too good. For example they state in the prescribing info that no long term studies have ever been conducted to see if the mirena's synthetic hormone is cancerous or not - that does mean it does not cause cancer, only that they haven't looked at that issue. Although they cover themselves by saying that if you do have a history of certain hormonal induced cancers, like Breast Cancer in the family etc then you shouldn't use mirena - yeah, and then some!! i do not think they have done any really long term studies at all, actually. someone else please correct me if i am wrong here... Possibly because the law does not oblige them to? And of course if they did, they could only test the direct effects of the drug itself, anyway, not indirect effects, so i guess it would be difficult. This would not take into account the state that the mirena leaves the body's hormone balance in, and all the other problems that can arise out of that state, if not helped in some way. And i think that is the problem with the general side effects too, some of them are definately from the levonorgestrel itself, but others are not from the drug directly, they are consequences of the imbalance of hormones that the drug is creating in our bodies, to which we would all respond slightly differently, though would still share many symptoms, which we do.That is a subtle difference, but a big difference legally, i would imagine.
The whole thing is a mine field of legalities, and i guess it would take someone with a lot of expertise, energy, time and money to fight these people. But one thing i would fight for, and that is to have clear information presented to people who are thinking about mirena, because it certainly is not made clear to them at the moment, which is why we are all here! there is no way i would have consented to mirena if i thought for a moment that it could cause all these side effects in so many people, but i have learnt my lesson, before taking ANY drug, i will always spend a lot of time googling!! Take care:) xx