Thank goodness, an active forum for Mirena! I was considering what to do after my first Mirena (placed 2008) "expired" so I was googling around about options and all the attractive facial hair that I have now. Reading stories about the bad effects made me realize that my physical and mental problems of the past 3+ years are very similar and coincide perfectly with the Mirena.
Two weeks after insertion, I slumped into an unexplained depression. I do not have clinical depression, and I feel like my life is very good overall. Nothing happened, I just felt terrible. By the end of the year I was suicidal and in therapy, and I broke up with my S.O., the father of my youngest child, who I was previously very happy with (he and I are stable now and managed to stay healthy coparents the whole time). I attributed the depression to our crumbling relationship, but really, the depression came first.
I had a lot of the symptoms--
*Weight gain, 10 pounds/year, and I now am the heaviest I've ever been in my life. I was gaining weight while I was training and running 5Ks 4/a week and doing other exercise.
*Painful cystic acne on my chin and jaw, and breakouts weird places like my calves (!!)
*FACIAL HAIR like I could not believe. I started going to electrolysis. And the hairs would be ingrown, leading to more blemishes/scars.
*Pelvic pain--ovaries and uterus, intermittent.
*Headaches/migraines, waking up 3-4 times a night for years.
*Brain fog, extreme forgetfulness
*With the depression, extreme irritability, especially with my children
The depression lifted after the first year or so, thank goodness, but everything else remained. I think I felt so much better for moving out of depression, I didn't really question how much my life/body had changed?
I am very sad that I didn't realize for so long what the root cause of this is. I had it taken out the other day by a doctor I don't usually see and...he did not really believe the IUD was causing any of this, but did comment that my chart has shown a weight gain from 2008 on, when I was steady before.
I have two questions--are there women here who have had it out and have, after "detoxing," had the acne and facial hair subside? It's only been a few days but every day I hope I am plucking the last hair and that I am seeing the last zit. I know (well, hope) the weight will go away as I am a sensible eater and exercise regularly.
The second is more of a statement...I am thinking of having an ultrasound or something done to see if I have any growths or tumors. I'm worried after all the pain I've had over the past couple of years. Did anyone find ovarian growths/tumors after Mirena?
My body seems to be flushing now. I am peeing like crazy, like post-PMS or after having a baby, every 5-10 minutes! I feel less puffy already. My brain feels a little sharper too and I am having vivid dreams. The doctor gave me a scrip for Seasonale, but I am going to stay off b.c. for a while to really let my body get this out.
Anyway, thanks, had to vent, I have filled out the FDA complaint form, wanted to say I feel better already (have read about the Mirena Crash and am watching myself, and others are watching me), and I hope things will improve from here! I think there's only up.
Good for you! I'm so glad that you found us. This is an amazing forum for women who understand, all too well, what you are going through! We lift each other up during crashes and celebrate with each other during the good times. We are truly "Mirena sisters" here. As much as I hate that we all have this in common with you, let me be the first to say, "Welcome to the family." :-)
I have a blog that I update frequently in case you are interested in following along. I try to include as much uplifting comments as possible as well as messages to Mirena victim's family members (what has happened to the woman they love, etc.) as much as I can to try to help. The address is http://www.mylifeaftermirena.blogspot.com
If you or anyone else has something that they would like to see addressed on the blog, all you have to do is let me know. That blog is for US...and for saving other women. We all can be a part of it.
As far as the cystic acne/facial hair. I didn't have the facial hair, but I did have the deep cystic acne all around my chinline for awhile. When I detoxed, it got worse for about two weeks (because of the huge amounts of toxins leaving my system, I'm sure), but then it went away completely, and I haven't had an issue since.
I'm so happy to hear that you have had it removed! Now...it is a "wait and see" game for you. For some women, they seem to heal right away and never have a problem again. For others...most of us on here...it is a LOOOONG healing process that includes multiple crashes. You just never know. What you can know, though, is that we are all here for you during all of it. Getting it out was your first step toward recovery, so congratulations for that!
I did start getting ultrasounds after removal, and found that I had started developing ovarian cysts. I have been worried about PCOS, because many of the symptoms I have faced are similar to what other women are experiencing on this board, and may explain why it has taken me so long to feel better after removal.
I just had my third ultrasound last week (My last one was in November, and before that, sometime last summer) and the cysts are gone! I have been gradually starting to feel better, and I wonder if this could be the cause?
Anyways -- just so you know, I truly believe that Mirena can cause cysts/growths, and if you have the means to get it checked out, it could be a good way to monitor your progress.
I just wanted to check in after having the IUD out for a week. I am having ups and downs. Sometimes the "brain fog," "flash" headaches (quick onset, sharp pains), and really horrible depression comes back for an hour or two, and I take a nap and try to shake it. As before, there is nothing external in my life that is causing these depressive mood swings. It feels a lot like when I first got it in--muddled and sad for no apparent reason. I am VERY tired right now and am sleeping a lot at night.
However--the good things.
*Numbness in my hand for the past 2+ years that I thought was Carpal Tunnel has totally vanished!
*Overall, my mood is better and I feel sharper
*Chin acne has already vanished, and I am hoping the chin hairs will follow
*I have lost 5 pounds, probably mostly water weight! My partner says I look and feel less puffy. I can tell also.
*Sugar and alcohol cravings have vanished. I no longer inhale food and wine at night after eating reasonable meals all day.
Hang in there, ladies! I will too. I'm taking vitamins and drinking LOADS of water and tea. I'm going to my NP today to ask about the lingering pelvic pains.
I have had my IUD in place for excatly five years now. I am set to have it removed soon. I have the worst facial hair that you could imagine. I have gained weight through out my abdominal area. My breasts leaked milk for almost two years after it was put in place. I have thinning hair that is so damaged that I am embarrassed to be seen in public most days. I was wondering if anyone had luck with their symptoms resolving themselves after the IUD was removed. I am afraid that if I pay for hair removal, that the hair will continue to grow. I am so glad that I am not alone. I felt crazy because my doctor told me this was all in my head.
I have had my Mirena in for 3 months now and will be having it removed next week. Its been a complete nightmare. My Mirena is not for birth control reasons but rather to treat symptoms of ademetriosis. I had a tubal ligation 5 years ago after my last child. I will be 36 years old in a few months. I told my doctor I did not do well on birth control but he insisted I try this first. So 2 weeks after insertion I had to go to emergency room because I was experiencing dizziness, vision went fuzzy, then my right side went numb from hand to face. Thought I was having a stroke! After a nights stay and lots of tests including MRI, I was told it was either a "tick" or a migraine. I was convinced the Mirena caused it. Though a bit concerned my gyno still wanted me to stick it out with the Mirena. So since then I have the following problems:
16 pound weigh gain, head aches, mood swings, brain fog, itchy skin, UTI, vaginal odor, 22 days straight of spotting each month and my latest is a peach fuzz like beard. The only positive is I dont have heavy bleeding or extreme pain like I did before. But I would gladly go back to that instead of all these other symptoms. Worse decision ever! Of course doctors are not going to attribute these symptoms to IUD because it is not exactly a great selling point!
I wonder if it is a fitting picture that many humans now are Daleks, because there is a living kind of "Kaled Mutant" squid thing inside. Hooked unto the nervous system, like the Face grabber alien, just on the inside.
Also that Torchwood Children of earth had it upside down. That the 456 was not here physically externally hooking up 10% of the children to get their good feeling chemical fix, but 10% (today perhaps much much more) of the children got the 456 hooked up inside, as they then live like squids sucking their fix of chemicals.
Both the Human Design System and Gene Keys reveal that we are in the midst of a great mutation that will complete itself in 2027 (only ten years from today)! These two systems also speak of the need for personal transformation (in preparation for and simultaneous to societal transformations) and that personal transformation requires a whole seven-year cycle. I personally have reason to say the seven-year cycle is a minimum time-frame and that this could just as well be a nine-year cycle. If we think in terms of nine years then those who wish to prepare have about one year or less to start their nine-year commitment to their own personal transformation. But why wait when we now have certain support in terms of specific planetary frequencies that are available to us now.
In addition to these frequencies there is individualized transformational support from this writer/consultant who has nine years under the first two systems (mentioned above) in addition to over thirty-three years under several other transformational systems.
I have had my lyme disease results back and the western blot section of the test was negative.
For the Elispot test, I tested positive for borrelia b. full antigen & borrelia b. OSP-Mix.
My T Cells CD3+ (%) was 82.05%. A healthy range is between 62 - 80 %.
My CD57+NK Cells tested as 54/ul. A healthy range is between 100-360 ul.
The following formulation was made:
''The result of the CD57 + NM-Cells count indicates chronic immune-suppression, which can be caused from borellia burgodorferi or other bacteria like chlamydia pnemoniae or mycoplasma pneumoniae.
I am immunosuppressed and I now need to find out exactly what sort of bacterial infection I have before confirming it as lyme. The lab that ran this test is very unhelpful. I have contacted a special diseases doctor with my results but it will be about two weeks until I get to see him.
I am a little shocked by this, but not surprised. I have been dealing with a very complex set of symptomatological problems for most of my adult life. Now my persistance is starting to pay off as each self-funded test I have helps me get further to the truth.
Wow, I never tested positive for the lyme disease specific bacteria borrelia b. This could very well be the cause for you. I'll have to check if my CD57 level was tested in the past.
Yesterday I wrote a post with link to how someone here cured EC by taking the drug Lamprene for leprosy. He visted a top clinic. The post didn't mention why the doctor prescribed the drug, but I'm guessing because it was very effective against resistant bacteria infections like leprosy.
Longterm, I appreciate the response. I am a little in shock over this and it doesn't prove conclusively one way or the other, which is the most worrying thing. I would rather know straight but the test is written in such a way not to fully contextualise the results. The lab is not responding to my request for further information; I suppose they feel they have met their part of the contract and it's for me to find out more using other means. It does feel pretty horrible.
If you are going to check your results make sure it is CD57- NK Cells.
I just noticed something on my lyme tests. Maybe I didn't notice it before because I was just looking for positive results. It shows EQUIVOCAL for IFA, B Burgdorferi G/M/A. In the past, positive EBV test results changed to EQUIVOCAL. So, maybe the IFA, B Burgdorferi used to be positive for me. Really, it means borderline positive. However, the Multiplex B Burgdorferi test is negative. The EQUIVOCAL for the other test is suspicious, though.
The CD57- NK Cells sounds familiar to me. I might have had that test done in lyme test panel but lost that page. I'm going to call the lab to see if that test was done. Was this test part of your lyme test panel?
I had the lyme test panel done after I took strong antifungal medication. I just read that an Equivocal blood test result may occur during acute infection of something. Perhaps my immune system became stronger while on the antifungal so it started to show more positive results for lyme? See the information described below. I wonder if this is why my infectious disease doctor thought I had lyme disease.
"Many times people do test negative - this can happen if your immune system is run-down as the positive results are based on your antibodies in your blood. If you're immune system isn't functioning well, then you won't have the antibodies.
Sometimes after a few weeks of treatment, a Dr. will repeat the test and it may then show up as a positive.
People do test negative and still have lyme disease.
But, it's important to see a LLMD to determine this."
"I have heard that a lot of chapped lips are actually due to bacterial infections as opposed to ordinary dry skin, so if that's true Lyme's patients ought to be prone to this. The most helpful thing I've found for this is to use Neosporin as lip balm. I don't know if it is the antibacterial action or just the emollient that helps so much, but I strongly feel it is the combination. As I've gotten deeper into my herbal studies, I've been making my own lip balm with coconut oil and clove oil, both of which are antibacterial and antiviral and they also give me much better results than plain lip balm."
I will ask the question tomorrow when I see the nutritionist. I don't know what this means at the moment and how it relates to other oppotunistic infections/co-infections. I suppose I should determine this before considering a lyme protocol because viruses are not affected by antibiotics.
Thinking logically; surely only HIV and Lyme have the ability to suppress the immune system? (T Killer cells in this case) those viruses do not.
chronic immune suppression. This is very interesting result.. please keep us informed on what your doctors say regarding these findings. Also may i ask a quick question how do you sleep? i.e are you getting good sleep and regulary? my sleep is an issue because i am a light sleeper i wake up several times during the night which i know isn't good for my immune system.
Also i am curious do people who have th-2 immune driven conditions have also a known weakened immune system?
Honestly? I am always tired. The earlier I get to sleep the more I wake up during the night and the more difficult it is for me to fall asleep.
I've become accustomed to going to bed later just so I fall asleep easier and only feel partly tired the next day. If I go to sleep early I know I won't fall sleep till later and I will wake repeatedly. So I'm used to being a walking zombie.
I almost never feel refreshed after sleep. I can't recall a day where I've felt I've had enough sleep, no matter how much or how little I get.
I'll ask your question to my nutritionist as I'd like to know that myself. My immediate impression would be that the activation of TH1 and TH2 subsets is likely caused by overactivity of the immune system not suppression. I think there is some difference between an inappropriate immune response to non-pathological antigens and the suppression of defensive cells in the body. If a person does not have lyme but has th2 driven conditions you always have to factor in environmental considerations like the lack of microbial challenge, dietary change that upset the microbial balance in the gut.
I think in your case it warrants an borrelia elispot test from an up-to-date laboratory and a seperate HHV6 test if that is what you think you may have.
My nutritionist does think it is plausible for these coinfections to take hold and stay in the body for many years due to the immunosuppression from the borrelia. So I could have one or more of those coinfections, and that could be the reason for my ill health; even my EC.
Very worrying that the basal range you mention from your records is considerably different to my lab's reference range. I suppose there may be some discrepancy between the prescribed ranges from lab to lab but not by that much!