Gosh!
I have had my mirena in for five years now. It was recommended to me as I suffer from endometriosis and have had excruciating pain with my periods from the age of 13 (am now 40.)
shortly after having it fitted I developed boils. Have never had them before and they are disgusting. Big deep painful boils. I went to my GP and she had me checked for diabetes and thyroid, came back clear. Then I developed a pain in my right breast. GP examined me and said there was a thickening but she didn't think it was serious. Having lost a cousin at a very young age to breast cancer my family weren't taking chances and insisted I went privately for a mammogram etc. All clear. Phew. The consultant said he thought it was linked to the coil. OK, I can live with that, no periods or spotting for painful boobs and boils seemed a fair trade.
I was exhausted all the while, I have twins and I was forever snapping at them then sobbing. Then I began to get aches in my hips, the tops of my feet began to hurt, then the heels. My back began to ache. Then I developed a rash on my face. The GP mentioned Lupus or rosacea. I terrified myself symptom surfing. I asked repeatedly if she thought it could be connected to the coil and was told there was no way.
I went on a very long waiting list to see a rheumatologist and spent the time frightened beyond description.
The rheumy told me she thought it unlikely to be lupus, but poss arthritis. She suggested removing the coil just in case.
A that point we moved house to a totally new area and I had some hope that a new GP may throw fresh light on my problems. He told me to lose weight. Oh yes, I forgot to say that since having the mirena I have gained over 2 stone and developed a huge apple shaped middle. So fat and unsexy, and you know the drill by now, I have no sex drive at all (NONE!)
I went to see the female GP at my new surgery and told her all of the above but she persuaded me that if I have it removed there is no viable alternative and my endometriosis will get bad again and lead to more operations.
I saw a dermatologist who diagnosed my rash as being rosacea. I also developed an allergy to the sun, so have been advised to avoid it totally. I have spent this summer wandering around with a parasol whilst people shout "I'm a lady" a la David Walliams at me.
I have also become very nervous and anxious. I have always been a worrier but my fears are getting bigger that ever. I particularly worry about any kind of transport except for a train, so getting in to my DH's car and just going to the shops makes me panic, longer journey's have me convinced I will die.
I saw a rheumatologist again a month or so ago. He says that he can find nothing wrong and can't offer any help. He says it could be a random thing and may spontaneously go away. he said it was unlikely but possible that it could be my coil.
Anyhow, it is due out now anyway, so i decided that I will ask if I can leave it out for 3 months to see if all my other symptoms go. I couldn't get an appointment until the middle of December, and I am terrified as having it inserted was the most excruciating pain of my life. I thought I'd look up and see if anyone had probs having it removed, and came across this thread.
I cried reading some of your stories, I feel so sad and angry that so many of us are told firmly that there can't be a connection between the mirena and the various symptoms we have. I have had 5 years of all kinds of medical fears and tests, and they all result in nothing.Sorry that my first post has been such a super long one. I will endeavour to be more concise in future.