I have experienced increasing joint pain since having the coil fitted a year ago. I do have some lumbar issues but not severe enough to explain type and severity of the pains I have. The only conclusion now is that it's referred pain from my uterus (adenomyosis) and joint pain exacerbated by the progesterone.
I saw a fantastic anaesthetist/pain clinic doctor just yesterday who, after 2 years of going from one specialist to the other, actually listened to all my woes and agreed with me that my pains are twofold. I needed a plan - what surgery to do first, if any, and he gave me one!! Given that the neurosurgeon wanted me to do cortisone injections and then disc replacement and the gynae team, though happy to perform hysterectomy and excision (suspected endo in POD), couldn't say for sure if it would ease my coccyx and rectal pain, I was confused and lost.
Dr J. has given me direction and I'm planning to go back to the gynae team and agree to hysterectomy! I'm about to start the lowest dose possible of amytriptiline and a strong analgesic to help with lumbar pain (I can't bend over or lean forward) . After hysterectomy, he will reassess what pain I still have. He is the first physician ever (and there have been many!) to agree with my instinctive feeling that my coccyx pain is due to my knackered, retroverted uterus!!
Anyway, back to the Mirena. I already had all the joint symptoms described above before the Mirena, but they got steadily worse afterwards. I believe there is a connection. Also, I swear I can 'feel' the thing and have to control the feeling of wanting to bear down, as if in labour. My cervix was irritated for 6 months and instead of horrendous periods I now spot on and off all the time (sometimes it's like the end of the 6 week bleed after giving birth, a sort of watery discharge). In addition, I've experienced weight gain and water retention, sore boobs, and acne on my back. I do bloat but less than before (so I think bloating is the endo/adeno and not the coil)
I don't know if this info will help anyone else but it may be useful for those who, like me, are cautious, analytical types. It has taken me over two years and lots of searching to finally find my way through the minefield. No solutions yet, but here's hoping! And it may help others to get to a similar place quicker than me! I doubted the gynaes' opinion on the need for surgery because they couldn't explain my coccyx/rectal pain; they weren't convinced enough for me to want to risk major surgery. And now, I think that if I'd gone ahead two years ago I'd have fewer joint pain issues. I believe that the pelvic inflammation has really taken its toll on my back, hips and legs.
As for the Mirena, it has given me more freedom to go out without worrying about flooding and clotting in public and has saved me hours of agony on the loo and I'd imagine it's great for fixing heavy periods in an otherwise healthy uterus. It has also practically eliminated my IBS (diarrhea) so I do at least know that the problem was due to high oestrogen - and I can stop worrying about GI disease (bowel and pancreatic cancer runs in the family).
However, for those of us with adeno and/or endo my personal opinion is that, despite relief from uterine bleeding and painful cramping it doesn't solve the problem and plays havoc with your cycle. In additon, I believe it does exacerbate joint problems (due to the hormones).
As for me, I'm off to the chemist for my new prescription drugs and to ring the surgical/gynae team in Barcelona for an appointment.
I'll keep u posted, just in case any of this helps anyone else (especially the ditherers and questioners/worriers - like me!)