I have a few questions, and put simply, they are:
1.) What kind of care should one follow up severe Mirena reaction with?
2.) What kind of doctor does one see to get screened for digestive or reproductive problems such as tumors or parasites or chronic disease?

So now for the long story... This first bit is just about my experience with Mirena IUD.


I'm a 22 year old white female. I had Mirena for 3 weeks in July 2009. I got it under pressure from a boyfriend. (Horrible idea.) I did some research on it beforehand and thought it looked safe. Ever since then, I've not had regular menstruation. Every month is painful and I get at least 100ml of blood/clot, as opposed to the norm, which I believe is about 30-40ml (I use a diva cup, which is how I came up with those numbers). While on Mirena, I began having SEVERE mood swings, dissociative episodes, panic attacks, racing heartbeat, heavy bleeding, cramps, diarrhea, excruciating headaches, and body aches.

I'd like to mention that I find it HILARIOUS that Mirena's prescribing information lists "excessive menstrual bleeding" as a condition that it TREATS.

I have not followed up my Mirena hell with proper medical care. I have been battling a series of chronic health problems, and have failed to see the docs because of a combination of distrust and personal negligence. (I received completely unsatisfactory care for Lyme, serious psychiatric illness, pharma side effects, et al. before adopting my own "unconventional" regiment to treat these things and detox from the pharms. More details below.)

The extent of my care since Mirena was getting it removed in the ER (they didn't do much for followup, they just pulled the thing out... I was too delirious to realize I needed more care), getting a routine GYN checkup months later (nothing particular to the IUD symptoms), and then getting an STD test about a year after that, following a rape incident.

I am still infertile and have lingering symptoms.

It is occurring to me now that this sparse care was probably not enough. My biggest concern is making sure that I don't have any serious complications that went unnoticed. But I don't just want to hear from another doctor who will discount everything I say on the basis that "Mirena can't cause that."

Any advice on follow up care ? Or how to explain what's going on to a doc without being discounted as crazy?

Thanks. Since I'm sure someone else has already posted similar questions, I would be satisfied with either a reply or a link to relevant Q/A in another post.

AND NOW A LITTLE MORE BACKGROUND ON THE OTHER STUFF.

I'll try to be concise but it's kind of a can or worms. Big fat worms, dangit.

I've been sick for a good few years now. It reached a fever pitch when I was on Mirena, in July 2009. My cognitive functioning has been so poor since then that sometimes I think it's still September 2009.

What I know for sure is that my symptoms are caused by some combination of "schizo-affective disorder", recurrent EBV, Lyme(&coinfections), and lingering drug side effects. I have a sizeable pituitary tumor which developed during a period of low dose antipsychotic drug "therapy" and MirenaHell, which has caused quite serious hormonal problems, from mood swings to diabetes. Symptoms are too numerous to waste time listing here, but you can get an idea judging by the diagnoses I listed above.

I have done extensive research and found nutritional/herbal remedies that put many of my symptoms into remission. I am very open minded. I don't discount treatments based on the nonsense put out by the FDA.

I'm currently on a diet devoid of wheat, sugar, soy, eggs, dairy, artificial ingredients, caffeine, and low in starch. I use a lot of medicinal herbs/spices, and I cook most of my meals myself (or prepare them raw). Every time I stray from this diet I get sicker again.

I feel that I'm either not doing enough, or not following my regimen closely enough---or maybe it's just a long road back to health. It's still hell half the time. Perhaps I just need to get off my ass and start doing some Rife treatments and/or enema?

I have not been following up with my doctors as much as I should. I stopped trusting doctors sometime last year while they let me get sicker and sicker and sent me in circles. Pharmaceutical medicine left me with a tumor in the middle of my head, debilitating panic attacks, and pain all over my body, just to name a few. And my PCP was still insisting I "see a psychiatrist."

A familiar story, I'm sure.

Having multiple chronic illnesses, this puts me in a sort of tough spot. I feel that I am incapable of making my own reasonable assessment of my health problems because I'm extremely paranoid schizo and severely delusional. I have a difficult time judging who is helping me and who is hurting me, when it comes to my doctors, family, friends. They all have good intentions, of course... But most of them don't know shit from Shinola in terms of treatments for health crises.

I want to know whether I'm as seriously ill as I appear to be or if I'm just being a drama queen. I've received conflicting reports from observers. I often get "You look fine," while inside I experience a cacophony of hallucinations, and every muscle and joint in my body feels like it's on fire. And I don't know what it means. The pain is so intense and widespread I can't deal with it all at once. My doctor asks me how I'm doing and every part of my body cries out for attention, and all I end up being able to tell him is, "My head is throbbing and my cognitive functioning has been poor. And I'm really tired." And it doesn't even occur to me to mention how painful and heavy my periods have been for the past year.

And maybe I'm too hard on myself, but I feel like I must just not be trying hard enough. Like I'd be fine if I just stopped complaining about it and developed some discipline.

On and off drug abuse and addiction has also played a supporting role in all this. I'm mainly talking about using psychedelics and alcohol as alternatives to opiate pain killers (which I generally avoid). I tried out-patient rehab once but became frustrated upon realizing that the staff was less knowledgeable about general human health than myself, and would rather see me quit cannabis than tobacco and pharmaceutical dissociatives. I also went into in patient for the schizophrenia at one time. But they kept trying to feed me meals filled with sugar, gluten, and dairy, and started me on antipsychotic drugs. I thought about admitting myself again, over the past couple months, having hit rock bottom and having severe trouble with the hallucinations. But the drugs and the poor diet would only make it worse. I was left feeling pretty morose and desperate. Too depressed to take action about it.

So I started doing yoga and taking St. John's Wort and smoking very small amounts of salvia divinorum. It seems to help. Maybe not enough. Or maybe just enough. Severe chronic health problems just can't be solved overnight by a few herbs over a few days.

I want to know what kind of doctor/specialist might be able to help me. I have a nutritionist & chiropractor who has helped me a lot, and a great reflexologist, but I know that is only a piece of the puzzle. I've seen endocrinologists and neurosurgeons but they typically send me in fruitless circles. I want to make sure I don't have a tumor or parasite or other serious problem in my abdomen. I want to figure out how this Mirena thing and this Lyme thing and this tumor thing interact with one another and with my whole health. I want to get an opinion from a "conventional" doctor who has knowledge about more than just poisonous pharma agents. I keep getting this feeling like there's some piece of the puzzle I'm missing. Does it seem like that's just my paranoia?

That was waaaay too long and incoherent and it was still only half the story. If you read this far, congratulations! I'll give you a prize. And then I'll write a humorous song about it while I sit on my ass and brood.

http://www.myspace.com/mrs.pain


"Break bread in my name." -Mrs.Pa_in

I strongly advocate the grain free diet.