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Had my Mirena IUD removed
Had it removed 4 weeks ago exactly due to terrible problems from it. I wont post my story unless you want to know. Last week I had pain on my left ovary and today pain on my right. Its almost like a pinching feeling. Leads me to believe it (they) are cysts. When I normally am not on BC I have 28 day cycle. But not sure what to think since just having the IUD removed. Anyone have experience with this ?
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Hi Avrora:) I have been thinking of you and hoping you are doing okay! That makes me so mad for you that the nurse was not standing by your request for a blood test. It is very smart on your part to be thorough and force them to verify their diagnosis 100%. Has your doctor done anything to help you with your recent bacterial infection? This is so very painful!  I am so sorry friend! The doc needs to get you feeling better! Have you considered going to a naturalist and getting some herbal remedies?This may be an option since it sounds like the meds the doc keeps putting you on are causing more harm to your body. There are homeopaths that can recommend some natural products to help with side effects and symptoms. Just an idea I wanted to throw out there for you! Please let me know how things turn out! I am glad to read that you are getting along well with Mirena. I know that cramping and pain in the ovaries can occur with Mirena but I will be crossing my fingers that this will be short term and with some time hopefully will get better. Please do keep an eye out for this because Mirena can cause cysts to occur so if you find the pain in the ovaries does not get better you will want your doc to check and make sure that there aren't any cysts. Not wanting to be an alarmist:) just watching out for you!:) You do not need any more stress friend sorry, hope this is not adding additional stress! I have to agree with your post that information is good to have, it helps us on individual level make informed decisions about our health. I hope that you are able to get some quality care from your doctor so you do not have to suffer anymore! I will be hoping things go well at the next visit. Please do post again and update when you get some time! Take care my friend. Sending you some healing hugs!!!!!:)
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Hi DMBfan41, thanks so much for posting back! I am so glad you are doing better! Please take care and do post back from time to time to let us all know how you are doing! Smiles to you!!!:):):)
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Thank you girl) Well i went to another doctor, as mine went to Hawaii for a week, perfect timing))) So i went to another very good  OB, he checked me for everything and said that i don't have yeasts or bacterias and he has no clue why do i have this outside terrible itch, so he prescribed me some cream that contains steroids to stop itching... i just started using it and in 3 days i've got bleeding...and pretty heavy bleeding i can tell with cramps...like i usually had my periods, i am a bit upset because i thought i'm done with bloody stories but seems like not yet, hope it's just my delayed period and i'm going to be ok. I'll keep you posted how i goes. And thank you for yr advice about herbs. During the herpes outbreak i was actually using calendula, which is the strongest antiseptic and healing herb/flower. I am very pro herb treatment though some peopl don't believe in it)))
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Is there anyone out there who had been on Depo for many years and then went to Mirena?
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98410 tn?1197496728
I found this forum while looking for possible side effects of the Mirena.  I got it the beginning of November and have been bleeding ever since.  The bleeding is now getting heavier.  I have also had a horrific outbreak of acne.  I knew I have been feeling weird...I even mentioned to my partner that I need to go and get a physical cause something just doesn't feel right.  I can usually go two days without washing my hair and now daily I must wash because of the oils.  I have been having weird headaches that come and go and the other day I hit a curb twice and parked about two feet from one curb that I am used to parking by.  Its like I'm in this fog...I didn't even think that it might be the Mirena, and it still may not, but that is a big coincidence.  The one thing that concerns me greatly is that I am an avid crossword puzzler, but I have had to put down my favorites and go buy an easier book because I just could not do the tougher ones any more.  I thought I was crazy until I found this site.  I'm really concerned now.
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I have now been doing a little research (and it keeps getting more and more interesting)  The Mirena releases levonorgestrel (a synthetic progestogen)  that not only binds to the progesterone receptor (what you want it to do) is also binds to the androgen receptor (the receptor that testosterone binds to which effects libido, energy, immune function, and protection against osteoporosis), and the mineralocorticoids receptor (receptor for aldosterone whose activation leads to the expression of proteins regulating ionic and water transports).  These are not the only sites that this hormone binds to, but you can already see why side effects are seen when putting this type of hormone into your body.  When the receptor sites for these other hormones are being used by the synthetic hormone then your body thinks there is too much of the other hormones and stops producing them.  That is why when you have the device removed your body takes a while to get back on track, because it has to figure out again what levels of these hormones to produce again.  Also when this synthetic hormone attaches to these other sites the functions of the cells do not work properly for protein production and you get all kinds of troubles brewing.  Our bodies our like clockworks and use precision to get everything right.  Now that I have done this research and will continue to do more I will have my mirena removed and will look into more natural BC methods.  I’m not going to put a synthetic hormone in my system that can wreak this much havoc.  We do not know what damages we are causing our bodies with this type of confusion.
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Hi friend! I do think your side effects are Mirena related. I know first hand because the first side effect I experienced was a "foggy head" combined with dizziness and this happened immediately after insertion and never went away that is until I removed.(not to mention many other side effects that did not go away until removal) I think it is safe to assume that if these issues have happened to you after getting the Mirena inserted it is most likely due to the chemical in Mirena. I have also done hours upon hours of research and have found that not only does the hormone that is released in Mirena not always local to the cervix but the makers of this product cannot give a completely accurate account of how and when it gets metabolized out of our bodies. The chemical that Mirena releases can mess with our hormone balances and I personally experienced a state of estrogen dominance after the Mirena was removed most likely because my body started to make up for the loss of the chemical by producing too much of one hormone and not enough of another causing a state of estrogen dominance to take place. Though this is certainly not the case for everyone as most women will feel better after removal and continue to feel better as the chemical works its way out of the system.I will paste some websites for you to visit. One of them is the official Mirena website that the docs have available to them when they insert but rarely share with their patients.

http://www.contracept.info/docs/mirena-doctors.pdf        

http://www.netdoctor.co.uk/medicines/100001706.html

I hope that you are feeling better very soon! Please do post back and keep us all updated! Hugs to you!:):):)
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Hello my friend! I think it is actually a good thing your doc is gone since you were able to see a new one who hopefully will be more sucessful in getting you feeling better soon!!!!! Is the cream working that the new doc prescribed? How is your bleeding? Have you tried taking the red raspberry leaf tea at all to help with it? It may be that your period has decided to show up or it is also possible that you are having some irregular bleeding. Hopefully either way it has stopped for you! I also am pretty pro herb as well. The least amount of chemical that goes into our bodies the better! I do so hope that you are doing much better! Keep in touch! Hugs!!!!:):):)
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Hi there! While I was not on Depo before getting Mirena I have been told by my OBGYN that Depo and Mirena are both a progesterone only BC and have similar side effects. How are you doing on the Mirena? Hope everything is working out well! Take care and do post back when you get the chance!
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Hi there! While I was not on Depo before getting Mirena I have been told by my OBGYN that Depo and Mirena are both a progesterone only BC and have similar side effects. How are you doing on the Mirena? Hope everything is working out well! Take care and do post back when you get the chance!
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Wow, what an eye-opener reading this forum!  I am sorry for so many of you who have had bad experiences with Mirena. I am one of the lucky ones.  I had been on ortho for 16 yrs prior to insertion of Mirena 4 yrs ago. I have no children (BC works for me!) so doc was a little concerned about insertion. Ortho wasn't working for me anymore (worse periods, cramping, etc), so he told me about Mirena.  He put me on a low dose of Progestin-only pills (to make sure my body would react favorably to Progestin), for 6 months.  Once we were confident my body was reacting favorably, he inserted the Mirena, or tried to. My uterus is tipped pretty far forward (as the ultrasound showed) and there was the difficulty. He was worried about perforating my uterus during insertion.  In order for me to have a successful insertion, he had to pull my cervix to get my uterus straight (OUCH) and then insert and release my cervix.  It took quite a few ibuprofen to get over that one. I had the same cramping others had right after insertion (and light-headedness but I think it was understandable considering what my body had just been through!), but by the next day I was feeling significantly better.  In a week, I was 100%. The only thing I notice now is that when I have gas, and my bladder is full, I start cramping.  I think this my be because of my tipped uterus and the position the Mirena is sitting inside of me.  I just make sure to pay attention to my bladder/gas.

I stopped bleeding within 2 months on Mirena.  I haven't had a period in 4 yrs.  I do notice a lowered sex drive, but that may be related to other things.  I have not ever experienced the depression, weight gain, or acne that others have reported having.  For those out there who have never been pregnant:  make sure you understand the side effects, make an informed decision (if you're reading this forum, you're well on your way), and make sure you trust your doctor.  My doc was very cautious and pro-active about my situtation.  He never treated me like I was everyone else.  He took the time to switch my pills to make sure that my body would react favorably, and ordered the ultrasound when the first insertion didn't go well, and then called other doctors to find out how to properly insert this into a patient with my problems.  Doctors have more difficulty inserting this IUD into patients who had never experienced child birth since our cervixes are much tighter.  I will be having a second Mirena installed next October '08 because it is the greatest thing I have ever done for me.  
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Hey girl) Well the bleeding turned out to be a period, but damn that was the nastiest period i ever had, the blood flow and cramping were as on the first day for 6! days. I had to stop using cream because of my period, so  i guess i will try now again. I drank raspberry leaf tea it helped me with cramps. Then within  6 days everything just suddenly stopped and right now i still have very light spotting. My OBGYN told me that spotting could continue up to 4 month...well I'm not going to wait any longer. I don't know why did i have such a heavy period on the 3 month of having Mirena, 2 previous were nothing but spotting. I'm not actually happy with another OBGYN because though he had this pretty frame doctor-of-the-year on the wall, he had no clue of the origin of the itch and it's been already 2 weeks i have it, i don't think it's an allergy. Oh well, i'll post here if anything new happens) Take care!
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This all is so scary to read. I thought I was the only one. The Merina still new on the market when I got mine almost 5 yrs ago. I got tired of the weight gain, breakthrough bleeding, cramps, pinching, mood swings, low sex drive to name a few. I figured I need to allow my body to regulate. I knew it was time when I could not fit my maternity clothes...UH! THE HUMANITY! So..If we have a baby we have a baby but at least I have all those darn hormones out of my body. I got my IUD removed on last Wed and I started bleeding Friday and have not stopped. It's starting to taper off though. I tried to read through the thread but there is a lot. Has anybody else had this issue...this soon after removal??
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I am sorry to hear that so many of you have had a bad experience with the Mirena IUD.  However, i do want to remind you that the Mirena has worked very well for many, many women.  it is a wonderful method of birth control (for most of it's users) and i highly recommend it to anyone who asks me about it.

I've had my IUD for a little bit over four years now .  I was 19 (am now 23, nearly 24) when i had it inserted.  I had to fight my doctor for it, as it was relatively new on the market and it is not ideal for people who have not had children.  (the uterus isn't stretched from pregnancy, and it requires a minimum uterus measurement of 6cm).

my gyno suggested everything else under the sun (patch, nuva ring, other pills)- but I stood my ground.  I wanted an IUD.  In fact, i had to sign a waiver that stated that I was aware of my increased risk of expulsion.   (I should state that it is now much easier for younger women without children to get an IUD.  but it is the success of women like me who have made it possible for them.)

as it turns out, my uterus was just barely 6cm.  Insertion hurt.  i'm not gonna lie- it was pretty horrible.  I could feel it snap into place as the little "T" arms expanded.

I followed my doctor's instructions and took two Aleve, twice a day, for 3 months after insertion.  (keep in mind, i was at very high risk for expulsion).

at one point, i forgot to take the aleve for a few days and i found myself doubled over in pain.. everything was swollen and sensitive.  i quickly took some Aleve and by the end of the day, i was fine.

I spotted for a few months after insertion, but it eventually subsided.  I did not have a full blown period for four years.  Occasionally, i would spot- but it was never fresh blood.  This fall is the first time that I've had a period since i got my iud.  and it only lasted a few days and was incredibly light.  i was able to use panty liners.  

there have been the occasional night where I've had (seemingly) cramps that were so bad that i could barely move.  in the past four years, i have had two of those nights.

I'm not going to say that my experience with the IUD has been perfect.  I did experience some acne (when i was a teenager, my skin was perfect.. now at 23, my skin is worse than it ever was.  sometimes it's clear, other times it's totally broken out.), my weight has fluctuated a little bit, and i do spot.  after reading these posts, i can also attribute the hair loss to the iud.

however, these side effects are not enough for me to trade MY iud for any other form of birth control.

i plan to get another mirena iud next fall.  in fact, i can't imagine being on anything else.

nothing is perfect.  it's just a matter of finding what works for you.  and i'll take the side effects if it means that i won't have periods or get pregnant.  
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363495 tn?1211760532
greetings all... i had mirena put in 4 days ago and i'm 9 wks postpartum... it was quite uncomfortable getting it in, but i took ibuprofen afterwards and i've been okay pain-wise since.. i have however been spotting since then too...
when my dr suggested mirena it sounded okay, as we had discussed tubal ligation as well, but since i'm younger (23) with two children it seemed drastic as i don't know how i'll feel about more kids later on in my life...
anyhow, what i didn't realize is that it comes with all these side-effects... and make it worse, i'm breastfeeding, and i didn't know that the hormone can get into my mlk... my dr said the iud is better than the injection because it's localized in the uterus, while the injection is in my bloodstream...
now i'm thinking about getting it taken out but what other really good BC is there for me?
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Hi there! It is great that you are doing well with the IUD and its side effects for you are bearable but I think you are incorrect to assume that the IUD has "worked well for many many women." There are some women that the IUD works for and some that it does not work for and there is no way of knowing the true statistics of just how many women are on either side of this. Unfortunately I have read too many personal accounts from women who were using this product and were recommending it to all their friends only to find out that their onset side effects were Mirena related and the docs did not give them any heads up nor did they give any credibility to the side effects being due to the IUD leading to these women being in the dark about their side effects for quite a time. It is a personal choice whether you want to take the risk with this product but it needs to be addressed that there are MANY of us women who have gotten this IUD and suffered seriously because of it. If you are getting along well on it then that is good but it is important to be aware of what can happen when using this product and to be responsible in sharing the "whole truth" about this product and its pros and cons with use. Side effects can happen at any time with use of this IUD. There are women I have talked with who did great on the first Mirena then after the five years they got a new one put in then experienced side effects. There are others who get them immediately. Still others don't get any until after a few months and there is a % of women who will never experience them. We always love to hear positive experiences and it sure helps many women struggling with the decision whether to use this BC or not to read the positive accounts that are posted. I just want to make sure we are careful not to pass on false hope that this BC is infallible. The doctors would like us to believe that it is a miracle BC for all of us but there are TOO MANY who are and have suffered because of it. Sorry  I sound a little preachy. I truly wish you the best with this BC and I hope that it continues to work well for you.  Please do post back and continue to share your positive feedback about your experience with Mirena. Take care!:):):)
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Hi firebaby,
I would like to congratulate you on your newest addition:) How are you doing friend?
The doctor that recommended Mirena had a responsibility to give you the possible adverse affects from Mirena  It disturbs me that you were not made aware these side effects the chemical in Mirena can cause. Mirena's own literature states that the doctor is responsible for offering the prescribing info to the patient. This info lists some of the possible side effects but the docs rarely give this to their patients. Instead they opt for the tiny handout that mentions a few of the side effects and cautions. I cannot stress this enough, the chemical in Mirena can and does circulate in the bloodstream and is not always local to the cervix. The doctors like to say the hormone is local to the cervix and they project Mirena as their miracle BC but remember that with each one they insert they get some money in their pockets. You might say Mirena and BC in general are the bread and butter of the Obgyns. I do not mean to sound so negative but I am angered when I see the docs take such an ignorant position on this BC when there are so many women who are suffering because they did not share the truth about what can happen! It does not mean all women will experience side effects but by not giving you all the facts the doc in a sense is taking away your ability to make a completely informed choice about your healthcare.

Mirena is not recommended as a first choice for breastfeeding Moms but it doesn't stop the doctors from pushing it. I will post some additional info regarding cautions of Mirena for breastfeeding Moms in my next reply.

I am here if you have any additional questions or concerns. I will paste some websites for you to visit so you can read for yourself the cautions and side effects. It may be helpful to print these out and bring them to your doctor. I hope that you are feeling better very soon! Please post back and update us as to how you are doing!:):)


http://www.contracept.info/docs/mirena-doctors.pdf        

http://www.netdoctor.co.uk/medicines/100001706.html









  



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Hi chocolatechildnkc,

Just wanted to check in with you and see if your bleeding has gotten any better? After removal of Mirena, my doctor cautioned me that the bleeding could be significant and that there could be clots along with it. If you are saturating a pad an hour or more you need to be seen at the hospital ASAP. The bleeding is most likely from removal and should settle down within a few weeks but please do go back to your doc if it does not get better.
Your period can take up to a year to get back on track after using BC for a significant period of time but some women see this get back to normal much sooner(even within a month or two).
I do hope that the bleeding has settled down for you and that you are seeing your other side effects get better after removal. It can take sometime for the chemical to get out of the system so take it easy for awhile. Please do post back and let us know how you are feeling! Sending you a hug!!!!:):):)
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Hi there,

Here is the info I mentioned about the recommendations of breastfeeding while using Mirena. Take care!:)


Found the following on Wikipedia regarding Mirena in breastfeeding mothers.





Nursing mothers
There is an increased risk of perforation in women who are lactating.[18]

Progestogen-only contraceptives such as an IUS are not believed to affect milk supply or infant growth.[25] However, a study in the Mirena application for FDA approval found a lower continuation of breastfeeding at 75 days in IUS users (44%) versus copper IUD users (79%).[26]

Levornogestrel is found in nursing infants at 7% of the concentration found in their mothers using the Mirena IUS.[7] A six-year study of breastfed infants whose mothers used a levonorgestrel-only method of birth control found the infants had increased risk of respiratory infections and eye infections, though a lower risk of neurological conditions, compared to infants whose mothers used a copper IUD.[27] No longer-term studies have been performed to assess the long-term effects on infants of levornogestrel in breast milk.

There are conflicting recommendations about use of Mirena while breastfeeding. The U.S. FDA does not recommend any hormonal method, including Mirena, as a first choice contraceptives for nursing mothers.[7] The World Health Organization recommends against immediate postpartum insertion, citing increased expulsion rates. It also reports concerns about potential effects on the infant's liver and brain development in the first six weeks postpartum. However, it recommends offering Mirena as a contraceptive option beginning at six weeks postpartum even to nursing women.[28] Planned Parenthood offers Mirena as a contraceptive option for breastfeeding women beginning at four weeks postpartum.[6]







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Thank you for posting! I am glad to see that there are some competent docs out there who are putting their patients well being front and center! I wish you continued success with Mirena! Hugs!:):):)
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ok i'm back to my previous OBGYN, she diagnosed the itch very easily - a second outbreak... so as for the heavy period i've got out of a sudden, she said that mirena may adjust up to six months, so if u stopped having periods and then got them back it could be normal, unless there are some abnormalities. What makes me laughing is how my doctor is against of herbal treatments. On my question if i can use Calendula spray to help the ulcers heal faster, she said that nothing works better than Valtrex and this is it))...oh those doctors...  
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I managed to get through almost half of the discussions on this page and I was very suprised. I thought that I was the only one experiencing the wrath of mirena. I'm sure it does not affect everyone the same way being that we are all individuals and our bodies will always react to things differently. I had my mirena removed 2 years ago and stopped taking birth control pills in March of '07. With the mirena I experienced weight gain, I went from 123 to 152, and major hair thinning. I also had the pain that was on the lower, left pelvic area. It was so bad I would'nt be able to get up and would take pain meds for it. After I had it removed the pain stopped and my hair has gradually began to get thicker again. I am also back down to 132 pounds. So I do know that there are some side affects that a few of these ladies had that are true. Also, I was looking for someone who was unable to concieve after having the mirena removed. Now I did use pills for one year after having it reemoved but it has been almost a year since then and I have been unsucessful concieving. :( What do you think? I enjoy you're discussions.
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Hi there my friend! I am glad you were able to get the itch diagnosed appropriately. It is ridiculous that your doctor does not leave the door open for considering the herbal route. Maybe she isn't the right fit for you to be your OBGYN. Though I guess if the docs pushed the herbal alternative they may put themselves right out of a job LOL! It still seems to me that she should at least attempt some further investigation into it since you have mentioned the herbal treatments to her as an option. My md is on board with the herbal treatments and always attempts this as a first choice to any ailment I may be experiencing. Sometimes the herbals work and sometimes I end up with a medicine if it doesn't but at least he gives me the option. We need to transport him to where you live:):)So as far as your heavy bleeding/period how is this doing? Hopefully this will get better with time for you as your doctor has mentioned. Have you gotten your doctor to check your blood levels to see if you have become anemic? This could be an issue if you continue to get this heavy bleeding! So I will continue to look for your updates and I will be hoping that everything settles down soon!!!!!!!! Take care my friend!:)
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Hi there! I wanted to ask if you have had your hormone levels checked? Mirena is a progesterone only BC and it can really mess with our hormone balances as can many other types of BC. There are a few of us online who have been researching a possible estrogen dominance connection because of Mirena's ability to send the hormones into whack. This is certainly not true for all women who use Mirena but if you are having side effects that do not go away after removal this could be what has happened. In your case you mention that you have been unable to conceive which can be caused by a hormone imbalance like estrogen dominance. I would suggest that the Mirena may have initially allowed this to occur then additional hormones from the pills continued to keep the balances uneven. Even after stopping BC your body may need some natural help to get its balances back to normal. It is definitely worth getting your levels tested to see where you stand because if estrogen dominance is the cause it can easily be fixed with some natural progesterone cream. You can order a saliva test right online to get your levels tested and go from there. I would like to add that it is important to have a competent doctor address these issues with you and make sure there are no other causes for the the infertility.

I thank you for posting your experience with Mirena. I wish you a happy healthy future friend! Please do post back and keep us updated on how everything turns out!
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Hi girl) Thanks for the answer, i wonder how you get time to answer to all of us)). Well my OBGYN said that this was still usual bleeding, she said it may happen again, but it won't be regular, so i hope it was due to the stress i am going through with herpes etc. But i will definitely keep you updated about any changes) And i don't care of my doctor's opinion about herbs, i just know what to use and I still use it even if she thinks it's useless)
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Hi again!  I usually monitor this forum and one other Mirena forum after my twins go to sleep:) Though I wish I had more available time to be more prompt with my posts and replies:) Okay, so I am assuming the bleeding has stopped for now hopefully?! It would definitely make sense that stress could be a contributing factor to why the bleeding has been so heavy. Stress can definitely throw our bodies off that is for sure! You sound very strong and smart about your health care decisions and I think it is great that you and only you are in charge of whether you use the herbals or not. I feel the same way!:) I will be looking for your updates my friend! Hugs to you!!!!!!
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I am 27, married and not planning to have children in the near future.  I have been using Nuvaring as my BC method for almost two years but am discontinuing due to frequent yeast infections and increased discharge.  My doc has recommended Mirena.  I have been doing as much research as I can and see a lot of negative side-effects.  I'm wondering if anyone has any positive stories?  I am so hesitant to use Mirena, I just canceled the "culture" appointment that I guess is pre-required prior to placement of Mirena.  In the past I used ortho-tri lo, depo-provera and will not temporarily use Loestrin 24Fe.  I liked depo, however my doc "doesn't like depo" because of "bone loss".  I for one don't want hair loss as some of you've discussed, I don't want sex drive loss, etc...  I'm so conflicted.  Its like this decision shouldn't be so difficult, but I feel like a daily pill isn't my most favorite option, I'd like something more long term where I don't have to think about it each and every day.  Any thoughts, I welcome!
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Hi jesselissa! It is good that you are doing the necessary research so that you have all the pros and cons available to you before making any decisions:) I have read posts from some women who are doing well with the Mirena. There are also some of us who have not been so lucky.My first concern is that you are hesitant to try the Mirena. I know that after reading some of the posts from many of us who have suffered some of these side effects it can definitely make you think twice. This product affects each of us differently so there is really no way of knowing how it is going to affect you. Some things to think about with the insertion of Mirena if you haven't had children are it can be extremely painful so if you decide to have it inserted I would recommend having your doctor give you a local anesthetic. The doctor needs to discuss this with you completely since they sometimes try to minimize this pain. Also, I will paste the official Mirena site so you can read through the docs prescribing info. There are definitely pro Mirena sites too and it may be helpful for you to visit some of those sites as well. Most of the women who post on this site have suffered side effects from Mirena myself included. If you scroll back you will find some positive experiences too:) It is a serious decision whether to use this product or not and it is always best to get all the facts so you are completely knowed up on the product. You will find support here no matter what you decide. I wish you all the best! Please post back with any concerns or questions. Also do let us know how things work out for you! Take care!!!!:):):)



http://www.contracept.info/docs/mirena-doctors.pdf         (this is the official site, hope this helps)

http://www.netdoctor.co.uk/medicines/100001706.html


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Hi. Thanks for responding. Can't get on here everyday but I'm sure going to try! I am going to enjoy having conversations with someone who has something interesting to say! I have'nt gotten my hormones checked out but I am going to. I thought about it before and now that you said it I think that I will. Could really be the issue since I have been on some form of birth control for years. Pretty sad and upsetting, you never really think that its taking such a toll on your body.
Thakks! I'll keep in touch. :)
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363495 tn?1211760532
greetings... thanx for responding... i would've come on sooner but i couldn't find the forum! :-) anyhow, for an update-- i did a little bit more research this time and i've decided for a copper one instead (nova-t)... i have the appointment with my ob/gyn and everything so it's all set... at least this way i don't feel so guilty everytime i nurse my son...  
since i've had it in, it's been only one day i haven't bled, and everyday it gets progressively heavier... i know with my first son i didn't see a period again until i started him on solids at about 4 and a half months, but can't it be that or just those ol' hormones messing with my system?
anyways... thanx again for all the info... take care...
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I had my first mirena back in Jan. of 2002 had it removed 4 years and 8 months later.. The extraction was the most painful thing I have ever experienced, but that was due to an incompetent Dr. who litteraly yanked it off of me.. I had the strings cut so short they wouldn't bother my husband during intercourse. They were cut so short I couldnt feel them @all.. That was not the problem, I had my annual every year & it was always in place but somehow got attached or ingrown,(to the cervix) and had the most uncedated, unsurgical, removal of the iud. Just to give an idea....it felt like he gently stuck his fist down my throat and grabbed my ovaries and yanked them out....(not exagerating)
But I did learn by consulting another Dr. that that was not the proper procedure for an IUD removal.
I did think about not putting it back in....I mean the pain was hell, but not ever having a problem with it and not getting a period, or bloated or pregnant which was my main concern.  I got it inserted again and I have never experienced such an extraordinary birth control system....THANK GOD 4 MIRENA......
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I really can't believe I found this site and all the bad info about Mirena.  I just decided to do a search to see if my side effects could possibly be from this IUD and boy was I suprised.  I have had the implant for 5 months and I kept thinking that I felt the same way I did when I was pregnant...depressed, sudden mood changes, nausea, memory loss, bloating, no dex drive, and even food aversions.  I've become someone I don't recognize.  I'm thinking the Mirena has got to go!
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Has anyone had milk coming out of their breasts, or had alot of pregnancy symptoms while having Mirena in?  Also, first you have to know that my iud moved and I had to go through all kinds of tests and they said it was still alright where it was at, but I have had bleeding during sex, and now I really feel pregnant.  Any suggestions or anyone like me?
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371827 tn?1216294962
I have had mine for 3 years and have not had any problems. Maybe you just got a bad Merina.
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363495 tn?1211760532
greetings... well, i've had my mirena removed, but since i've been bleeding everyday (except one) since i had it put in, my obgyn decided not to put in the copper iud same time, but wait and let me "heal".... it's been 5 days since and i'm still bleeding away... how long will this last?  
and i know the copper iud has the potential to make my periods longer and heavier...
the things we women have to go through... i guess it really is a good contraceptive device, cause with all this bleeding you can't have sex, and if you don't have sex you can't get pregnant! :-)
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363495 tn?1211760532
oh yeah... the removal process for me was a walk in the park... i didn't even believe my doc til she held up the device to show me it really was removed... i didn't feel a thing, unlike putting it in, which took about 3 or 4 tries...
however, i did take ibuprofen an hour before removal, but none before putting it in, so maybe that had something to do with it...
my main concern is the breastfeeding and hormone, but besides that, my side effects (apart from bleeding and headaches) were minimal...
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Hi detcitygirl! Sorry I did not respond sooner. The holidays are pretty busy for us and probably for you too:) I am glad to see that you are going to get your hormone levels tested. Were you able to order it yet?  It is so terrible that for some of us it can have short and long term affects! Hopefully you will be able to get to the bottom of things by getting your saliva test done! I will be thinking of you and hoping things are going well for you! Take care and please do post back from time to time to let us all know how things turn out for you!!! Hugs!
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I've had the Mirena for 3 years and never had a problem until recently. I've been getting cramps from Hell and my breasts have been hurting everyother week. My periods are light and usually last about 3days. But the real problem that is unexplainable to me is why does my boyfriends penis puff up like a marshmallow after sex. We both had yeast infections and the doctor gave us pills for it and it went away. We both got checked (and double checked...lol) for std's. None of that is the problem. The doctor seems to think that he is allergic to the hormone in the iud. And we've been together about 5 months and this has been going on about 3. He says it feels like a burn on his penis. He peels the skin off. He travels alot and I think by the time it is almost gone we have sex and it flares back up. How is it if the Mirena only produces a little amount of hormone that it can damage him like that? I've never seen anything like it. I'm truley considering having it removed. Hes not home thru the week to go to the doctor unless he takes off...which costs alot of money. WHAT CAN I DO? HELP ME....I'd like to have a normal sex life.(LOL
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Hi firebaby,

I am so glad to see your removal was successful. I think it was very wise of you to remove. My thinking is if there is any risk or doubt it seems better not to chance it!:)  I am also glad to see your doc did not start the new BC right away. Your body needs time to recover from the Mirena and certainly your bleeding needs to be under control since the copper IUD can cause heavy bleeding to occur. How is your bleeding? I know it is so frustrating to bleed constantly while Mirena is in only to get it removed and have the same be true! It usually does get better for most women after it is removed. For me, this post removal bleeding cleared up pretty quickly but it is not uncommon to have clots and heavy bleeding initially after removal and even for a week or two after removal. If your bleeding does not stop or gets worse you need to get back to see the doc ASAP. I found that red raspberry leaf tea helped my bleeding significantly. If you like using herbal products this may be helpful to you! I think if at all possible you should try to relax as much as possible, drink lots of H2O, and give your body the time to naturally detox all the Mirena chemicals out. I do think the bleeding you experienced has been Mirena related however if you find it does not get better you may need to be reevaluated to see if there are any underlying conditions to blame. Hopefully you are already doing better now!!:) How are the headaches? I hope they have gotten better too. Please post back and let us know how you are doing! Take care of yourself! Happy New Year too!!!!!!:):):)

  



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Wow! You have truly been through an ordeal with your Mirena and it is incredible you can still be so positive about it! Did you sue the doctor who removed it incorrectly? I cannot imagine how painful that must have been. I am glad a qualified doc put the new one in and that it has been a great BC choice for you! Take care and do post back and keep us updated as to your positive experience on the Mirena! :):):)
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Hi there! Glad you were able to find us! Yes Yes Yes your side effects do sound Mirena related. You are on the ball to mention your side effects are similar to pregnancy ones. BC can trick the body into thinking it is pregnant which is why some of us start getting pregnancy symptoms. It is always best to get a pregnancy test done just in case since even on a BC that is over 99% effective you can still get pregnant. Most likely your body is reacting adversely to the progesterone that is released by Mirena. The docs like to say the hormone is only local to the cervix but this is deceptive of them since Mirena's own literature explains a certain amount is released into the bloodstream. Furthermore, Mirena cannot explain how and when this chemical gets metabolized. This is what is most disturbing to me since you have this chemical storing up in the bloodstream and do not know when and how it gets out. Unfortunately, this is most likely the reason for why we experience side effects. There are some women who get little or no side effects and for them it is most likely the chemical stays pretty local to the cervix. However that being said side effects can happen at any time so even if initially this is the case it is best to know what can happen if the hormone should move into the bloodstream and cause side effects. I will post some web sites for you to visit so you can do the research about your side effects. Your doctor may minimize your side effects being from Mirena but I suggest you print out the info from the sites I post and bring them with you to your visit. I read a journal artical recently that says doctors are not listening to their patients concerns about side effects they are experiencing from their meds, BC included. These drugs are not studied intensely enough for these doctors to say 100% the side effects experienced are not caused by a particular drug. Should this happen to you, it is important for you and only you to decide about Mirena and its pros and cons for you! Hope the info helps you make an informed decision! Take care! Hope you are feeling better very soon!!!!HUGS:):):)


http://www.contracept.info/docs/mirena-doctors.pdf        

http://www.netdoctor.co.uk/medicines/100001706.html



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Hi there! I read a similar post on Curezones Mirena forum not too long ago. In that post the women referred to leaking milk from her breast as well. Mirena can trick our bodies into thinking they are pregnant which is why you are probably experiencing pregnancy symtoms.  I am not sure what causes the milk production to occur but if you visit Curezone I am sure the ladies over there may have a better answer for you. It is best to rule out pregnancy with a test since you can get pregnant while using Mirena though it is rare. Have you been back to the doctor for any further follow up? You may need to get another opinion if you feel the doctor is not addressing these concerns adequately. I hope that you are feeling better! Please post back and let us know how you are!!:):):)
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Hi There! It is great that you have not had any problems with your Mirena.If you go to the official Mirena site you will see the reality of what can happen and has happened for some of us. We have all gotten the same Mirena that you have the difference is for some of us the chemical that Mirena releases goes beyond the cervix and circulates into our bloodstreams(sometimes in high amounts) in turn causing side effects to occur. I appreciate you sharing how well Mirena is working for you. There are other ladies on our site who are getting along well with it too. There are plenty of us who have not been so lucky and as such we appreciate the understanding and empathy of women like yourself. I wish you continued success with Mirena. :)
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Hi friend! Unfortunately, side effects can happen at any time on Mirena. I read a post from a women who had hers removed after 5 years with no problems only to get her new one put in and then she got extreme side effects and had to remove. I am sorry this is happening to you! I would monitor these side effects and visit the websites I listed in a previous post so you are 100% informed. As for the chemical causing allergic reactions, I have heard other women who were actually getting allergic reactions to the progesterone in Mirena however I did not know it could cause a partner to get similar side effects. I think you may get some feedback from the ladies on Curezone's Mirena forum. I think if the Mirena is causing you and your boyfriend these side effects then it may be time to consider removal. Please do post back and let us know how you are doing! HUGS!:):):)
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Thank you for your posts.  I have been considering getting Mirena and started doing research this evening.  After reading the web site I thought Ok, this is alright. Then I found this forum and after reading half of the posts, I have to say hell no!  I am sorry you all had to find out the hard way, but I appreciate the fact you decided to share your personal accounts.
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I had Mirena for 1 year. The insertion was painless. Having no periods for a year was great. I too could not lose the weight and swore to my provider that it made me crave sweets, especially chocolate (not normal for me). I also had extreme bouts of depression. The provider mistook something I said and placed in a mental facility due to suicide watch and it took me three days to get out. I never said I was going to hurt myself, I just cried the whole time we talked. Anyway, I I contacted another provider because I wanted to concieve my third child and have the Mirena removed. It was removed Nov 6. Three days later I began to bleed and thought it was my first period. It wasn't painful but I would lose clots bigger than a silver dollar. Just whole chunks. It was like my insides were falling out. I had to change protection every 20 minutes or ruin my clothes. That went on for two weeks and when I called the doctor, she said to come in. They did some checking and there was a cyst on my left ovary. I have since had a very mild period and then an ultrasound showing the cyst is gone. Now I'm a day late and the pregnancy test comes up negative. I'm glad you women have post this info.
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Well after alot of consideration I have decided to get the Mirena removed and get my tubes tied. I have 2 beautiful children and I shouldn't have anymore. I had hard pregnencies with my kids. I had a son that passed away from premature labor and problems after birth so it's just better off. However now my boyfriend is afraid that I'll go crazy on him. I just want to know if anyone knows about the side effects of getting tubes tied. Is it anything like having a hysterectomy?
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I had Mirena for about 2 years... the worst 2 years of my life! I didn't actually realize how bad I felt until after I had it removed. I actually thought I was going a little crazy! Memory loss, foggy head, EXTREME hair loss, zero sex drive, rashes, moodiness. That device is horrid and I cannot recommend it to anyone. Hopefully my hair will grow back....
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hi i had the mirena in for about 9 months the worst 9 months of my life  especially the last 4 months the mirena is a horrible evil contraception my side effects were joint pains, really bad dizziness, pins and needles in the hands and feet , numbness , blurred vision, chest pain , heart palptations, really bad anxiety you name it i had it i have had it out now for 9 weeks and i feel so much better not 100% but nearly there so if anybody is thinking about getting this thing dont
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I had the Mirena IUD placed in November of 2006. I had pretty bad cramps and spotting the first 6 months but after that, it seemed like things were going great. I liked the hassle-free sex and lower dose hormones compared to the pill. However, I've been gaining weight (about 5-8 lbs) over the past year and I'm not sure if it's because of the Mirena or if I'm not exercising enough/eating right. I'm beginning to think it's a combination of the two.

I also have no sex drive - I can go for months without it.

I will try eating healthier/exercising more but if it doesn't work, I think I'll have it taken out. I will let you guys know if I see improvements afterward!
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390626 tn?1200556720
I had my IUD put in right after I had my son and loved it I had no problems for about 3 years. I had it took out about a year ago because we wanted another baby the doctor told me that I could have a baby soon after it was took out well it has been a year and still no baby. My periods are so off they are either on time ever month or like now I will bleed for 2 monthes stright. I was just hoping someone could tell me how long it took them to have a baby after they had there IUD took out and how long it took for there periods to stay on time. Any help is welcomed haveing this baby means alot to me and my husban.  THANK YOU :)
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Well my new updates. 1) My periods are total mess. They start pretty much on time, but the flow is the same all 6 days, like on the first day. Doesn't get any better. Right after periods spotting starts as well and continues something like till 1 week before another period((((. 2) MY hair! OMG! I have long very very long hair, they became soooo oily, i wash them everyday now though i usually did once in 2 days. Sometimes i wash them in the morning and in the evening they are all messed up. 3) I have evening cramps, exactly when i go to bed, i have no idea how's it related, but pretty annoying. 4) Skin is back to normal...at least something is recovering. 5) As for the weight i realized that i gain it as easy as i loose it. So it's not an issue. But craving for food definitely increase, so more attention to the work out is necessary as well as to what you eat.  I'll keep posting my changes)
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I had the Mirena inserted in August 2007 and since then I have bled or spotted more days than not.  I finally decided after have 3 1/2 days of nothing and then starting again, to see another dr and have it removed.  I was able to get in the next day and today will be the start of my new life.  The past few months have been horrible.  Minutes after it was removed, I felt like a different person.  I then started a real period.  Let's hope.  I have 40 years old and never had children.  If you have not had a child, I would not recommend this type of birth control.  
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I guess I'm not going crazy after all.  I had my Mirena inserted at my 6 week pp check-up and I haven't stopped bleeding since!  My emotions are nuts.  I've been having episodes of rage and suicidal thoughts.  My heart pounds in my chest and I have difficulty sleeping.  I am very distracted and can't focus, but that is probably due to my ADD.  I have never felt so out of control before.  This is my fourth child.  I have experienced some minor PPD with my other children, but nothing like this.  I guess I will look into having it removed, but then I have to find another BC option.  The pill is no good b/c I can NEVER remember to take it and my husband doesn't like the idea of me using the patch.  I hate that anyone else is experiencing these same symptoms, but I'm glad to know I am not alone.
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Wow, everything you lovely ladies have decribed is how I feel and have to put up with, everyday of my life since turning 42 years old . But I don't have the mirena as yet. I will be getting it inserted on the 21th of jan 2008. I have cysts on my overies, I have polys that are about to be removed, I have continuing spotting everyday between my periods, and when they come its faint city. They are heavy and painfuull and full on. I didn't think I had that blood in such a small area. I faint around the second and third days. I try and sense when Im about to faint but never make it .My head hurts, I had stiches numbers of times, and now I hate hospital, (lol). I can't work when I have my periods as they are heavy .I think maybe it was a age thing.My doctor said its not menopause. ( Im looking forward to menopause). I have put on weight, (maybe a middle age spread)? . Sometimes I wake in the morning and I have seen to recieved a breast inlargement, which I wasn't aware off. Im 16C but it seems to go up and down .

I wake up in the morning with loose hair in my mouth and pillow. My mum is 78 and is going bald, so I think is going to be the same for me. When I was pregant I lost alot of hair but this is quite normal as everything goes faster for the baby. I have very bad PMS, I cry for no reason, but I do have teenagers!. Im in contieuing pain a week before and during and a week after my periods.

I have diarrhoea thoughout my periods. I feel sick but not so I want to vomit. Some days I eat like a pig and other days the sight of food makes me sick. Im 78kg.(156 BLS) so I don't have a eating problem. My periods are never on time either five days late or five days early. They were great before I hit 42. Oh well for me I think I will have the mirena inserted. I have read everything you lovely women are going though. If my problem gets worse, (I wonder, could it get worse?????. ).But right now Im going to try this mirena iud. Maybe I could get lucky and it might work for me. LOL , if it gets worse ,(how would I know? lol), I will have it removed so quickly. I will let you know what happens. Goodluck to us.
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I had my Mirena removed Nov 2nd 2007 and periods went back to normal fast. The mirena was pure hell. Even after removal my hair is falling out and have not been able to conceive. I used to be so fertile you couldn't stare at me too long if you know what I mean. I'm getting married in April and I we can't even conceive. I wish I knew this before the Mirena I would choose my hair and fertility over this ****.
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I had my mirena put in last friday, it was very painful to me, I am wishing I would have read this before I went and got it. The doctor assured me it would be okay. I have been on the pill the nuvaring and depo and all caused weight gain acne and my hair was comming out in chunks with this nuva ring. I was so optimistic about this mirena and now I think I made the wrongdecision. I have to get a check up in 6 weeks and I am wondering if I should get this removed and the paragaurd put in instead! help!
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As far as my experience with Mirena goes, I am completely pleased and satisfied with this method.  I too have had mild cramping and/or bloating, but would overall reccomend this method.  As far as the numerous side effects are concerned, I have had NO difficulty finding them listed in any pamphlet or anywhere online.  I assume some of you women who have posted that have been so devistated by side effects or just outraged at not knowing about them have access to all the internet information available.  Mainly I am concerned by the fact that for someone who is not educated enough to read or research a product they are hardly qualified to use the whiny scare tactics to instruct others to avoid said product.  In particular, to the woman with the (indeed tragic) news of learning of her ovarian cancer, do you really expect us to believe that your cancer was caused by 3 short weeks of the use of Mirena??  I mean, really???
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I really wish I would have done a little more research on Mirena before I had it placed. I originally got pregnant from forgetting to take the pill a few times and did not want to have another unplanned pregnancy so I thought Mirena would be best. I was wrong, the pill would have been SO much better than the IUD. I had cramps for the first few months, then every once in a while I would have EXCRUCIATING cramps. So sever that I thought my appendix was bursting. I also have had terrible, sever acne ever since I had it inserted. I was just getting over my acne I had during pregnancy and then I got Mirena and BAM, my acne erupted. I am embarrassed at how awful my face looks and I am getting married in 4 months and I am going to look awful. not even the best make up you can buy can cover up my acne. Not only that, i have had mood swings like crazy and have been feeling depressed more often than not. I truly think it is the Mirena that is causing these symptoms.You never think you are going to be the 1% that has the side effects listed for a product but, i guess i am the unlucky 1% that does. But looking online and researching a little more it seems a lot more than 1% have the same symptoms as me. I think it is Mirena job to inform us a little better and not just tell us that these symptoms are "rare" but are likely to happen. I feel like i have wasted time and money with mirena. If any of you ladies are considering Mirena PLEASE do your research and become informed on ALL your options. I wnet with the eaisest birth control product i thought available and i got slapped in the face with all these problems thta come along with it.
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I forgot to add this also: I was breastfeeding when i had mirena inserted, because i was told by my doc that it was safe and would have to effect on my milk supply. That was completely opposite of what happened. I completely dried out and was pumping 1 ounce in each breast withing a week of getting mirena, when before i was pumping 4 ounces in each. I had to give up breastfeeding my 5 month old baby because i simply wasn't producing enough. i tried pumping more and longer, every hour for 15 minutes. It didn't increase and it just took up my time. so if you are breastfeeding, i do not believe that it has no effect beucase it DEFINITELY does.
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Well this is very interesting and could explain a lot! I had Mirena put in about 4 years ago and recently had it taken out. I googled Mirena to find out how long before my periods came back, it has been about 5 weeks since getting it out. If you asked me 1 year ago what my thoughts were on it I would've sold it to a nun, I liked it that much.

Why did I get it out you ask? Well, about a year ago I was diagnosed with an ovarian cyst, which I was told by Dr. that it had nothing to do with the IUD. This year I still have a cyst and I told him I wanted to remove the IUD regardless because I had no history with cysts and if the only thing that had changed with me was an IUD I didn't care what his thoughts were but I wanted a foreign object out of me. He did remove it.

Here is the interesting part. I had no clue what the side effects were and had no clue about them until finding this site! Not long after having it inserted I started to lose tons of hair! I had a ton to start with so it wasn't noticeable to most. I found hair everywhere , my stylist told me to go to the Dr. when she washed my hair and it was falling out in her sink. I went to Dr. he said it could be anxiety, stress  or horomones. Had hormones checked out  and they were fine. The hair loss happend for about a year and subsided. I had an incredible pain on my left side, it was debilitating pain, I felt like my uterous was going to fall on the floor if I stood up about twice a month. If I had gas the gas moving around my ovary killed me! It was the cyst I had grown. Since I've had the Mirena removed I've only had the pain once and it was much, much less, possibly to my cyst shrinking due to removal. I am going in a few weeks for a recheck of cyst. I have had ZERO sex drive. I never had a high libido but it was gone, it's still not great but better. I am on anti depressants now and hopefully when going to dr this week can explain to her my Mirena issues and get off of them. I have never had any issues with my state of mind...ever. I went on them a few months ago for the 'blahs and anxiety'. I had some numbness a few years ago that was unexplained, I went to a neurologist and the educated guess was that my body wasn't processing something right and was having an allergic reaction to something. It wasn't severe , it was more that my sense of touch was 'off ' . I have had a light fatigue for a really long time now, I feel good after a nap but if I don't get that nap I am whooped. Since getting the Mirena out I have had zero fatigue, infact I almost have too much energy!

This is so enlighting! It explains so much about the last few years. I switched Dr's last year due to my frustration with him trying to talk me out of getting the Mirena removed, and this was before knowing all this info. I can't wait to meet with my new Dr this week to dicuss this IUD!

Thanks to whomever decided to start this enlightening forum.
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Hello everyone. So far i have been having Mirena for about 4 month. This month i didn't have a normal period. I know that's due to Mirena's function but still it is kind of scary feeling as  i have spent 25 years with the knowledge no period = pregnancy. I did a pregnancy test just to calm myself. Negative. Spotting doesn't go away though. I give it 2-3 more months and take it out if spotting doesn't stop. I spend more money on everyday pads than i have ever had in my life and it's just annoying as well as frustrating. During the period time i had all the symptoms of a period - cramps, bloating etc. My skin is again a mess, my hair is no better, weight is stable though i don't know for how long)).
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I've had the mirena for almost a year now and my bleeding is still very irregular. I get occassional mild cramping. The bleeding, though, is terrible. I have maybe 10 days a month that I don't bleed. It's usually pretty light but sometimes get  heavy and last bleed 3 wks straight. I'm afraid I'm going to bleed to death!! lol jk about that last part. So is this something to be concerned about??
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I've had the mirena for almost a year now and my bleeding is still very irregular. I get occassional mild cramping. The bleeding, though, is terrible. I have maybe 10 days a month that I don't bleed. It's usually pretty light but sometimes get  heavy and last bleed 3 wks straight. I'm afraid I'm going to bleed to death!! lol jk about that last part. So is this something to be concerned about??
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I have had the Mirena for 3 yrs.  I love it.  Someone mention an odor.  I've had 2 bacteria infections and now I think I have a yeast infection.  I still spot after 3yrs.  And sometimes after intercourse i spot a day or two later.  What's up with that?  I question my dr about the spotting and she told me it could be stress.  I've only tried the pill and the ring.  I am a flight attedant and i am way from home 10-20days out of the month.  Taking the pill at the same time every day doesn't work for me and oversea you cannot buy the ring.  I truly love the Mirena, however it's like I do not feel fresh anymore and always wondering about how I smell.
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Mirena was fitted 1st time with absolutely no side effects. Second Mirena fitted last year and has been a nightmare. I have been bleeding continuously and have become very frustrated as a result. My gynae says that we might just have to remove it. Pills and injections are just so high-maintenance. Going to investigate other options. I am so surprised at the input on this forum - I had no idea that there were so many issues related to this product!
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I have had the Mirena for almost a year now. For most of this time I have been, well, irritable would be an understatement. How about an f-ing b****! I have felt like I was suffering from depression and I've been completely unable to control myself when I am angry or frustrated- and I have a 14 month old! I am always frustrated! Well, I've been in therapy, I've had tons of blood work and I am on B-12 injections. Just last week I think to myself- what about the Mirena? So I go online and here all of you are! I am so glad i found this because as some of you pointed out, doctors are not going to tell you that this is the cause of the distress. I am so sad that I have spent my child's first year feeling this way- I've considered my depression/ manic irritation a real emergency since I haven't even recognized myself and never knew what I was going to be doing next- thankfully I have always been able to control myself enough to never have really frightened my child, but I sure have been scared. I have an appointment to have the IUD removed next Thursday. I feel like a huge weight has been lifted from my shoulders at the discovery that there may be an answer to my problems and prayers. My poor husband has really borne the brunt of this. I hope this works! I really need to get back to normal! I read a posting that mentioned a class action lawsuit- does anyone know about this? Of course i could never get the last year back from them... Wish me luck! And thanks for being here.
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I had the Mirena placed in May of 2006 after the birth of my DD. The insertion didn't hurt at all, but I did bleed for about 6-8 weeks.  The first year was fine,I had some symptoms (heart palp, cramps, light dizziness, headaches, hair loss), but I could live with them for the ease of the BC, oh and I haven't had a preiod since I had it inserted. I should also mention that I have no sex drive and sex is painful (but I chalked this up to breastfeeding)

In Sept of 2007 I started having some serious issues, mainly severe dizziness and headaches that won't go away with medication.  I almost ended up passing out in Wal Mart and having to go to the ER.  Since then I've been dealing with pretty severe dizziness on a daily basis in addition to all the symptoms listed above, and they've done several MRI's and ultrasounds to check everything out, along with dozens of blood tests (thank God I have insurance!!)  Everything has come back completely normal.  My PCP recommmended that I see a therapist, thinking that all my symptoms are anxiety related.  So, I've been seeing a therapist and nothing has been helping.

It wasn't until the other day I was trying to think what have I done differently and wracking my brain to think of potential causes to the dizziness that I thought about the Mirena.  After doing some research I've decided to have it taken out and see if it's the answer.  At this point I just don't want to leave any stone unturned and I'm so tired of feeling this way!  I want to be back to normal!   I'm calling my OB/GYN tomorrow to schedule the removal!  Thanks to everyone who has shared their experiences, it's nice to know that I'm not alone in feeling this way!
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Hi - I have had the Mirena for five years, just got it out and have found out that I have osteopenia.  I am forty, have two kids, have always been a runner and athletic but not skinny or fat - no eating disorders AND I don't understand how i could have osteopenia. When I read all the posts I began to realize that the acne that I have developed, along with the uncontrollably itchy skin and dx to go along w/it (atopic derm) AND the yeast infections that come like clockwork could all be tied to this Mirena IUD that I actually loved, loved, loved!  Could it be possible that the Mirena has caused all these problems? If so, then I am glad that it is out and I won't get the new one in next month.  Ideas or thoughts, ladies?  Nancy
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Hey Ladies!  Thanks so much for all of the information.  I have had the Mirena for almost three years now.  Insertion was very painful and I experienced cramps for a few months, but I've been relatively fine since.  I can say, that I have been much more forgetful the past few years, much more bloated and sometimes more down, but I never would have thought to attribute those symptoms to my IUD had I not found this site.  Overall, I have to say that I've been happy with the IUD; however, I am scheduled to have it removed this Friday and am nervous about the bleeding and the possiblity of not being able to conceive.  I plan to talk to my doc about the things I've learned here but am wondering if there is anything else I should ask about.  I am more than ready to have a child and want to make sure that I am as informed as possible at this point.  Any advice would be greatly appreciated.  Thanks!  
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The more I read, the more frustrated and upset I get. I had my Mirena IUD for a little over a year now, and it has been trouble since day one. for starters, I have to agree...they do Not advise all the possible problems and complications when you get. It was downright excruciating to have it put in. My Dr. pretty much dilated my cervix (which was almost unbearable). I broke out in a sweat and almost passed out quite a few times in the car on the way home. Not to mention, I was in allot of pain for at least an entire week (if not more).The pain was that comparable to labor contractions. I was literally in tears as my cervix contracted back to it's "normal size". I could remember felling a strong pain coming on (just like contractions), and feeling my face turn red and flushed and also dizzy. That was just the beginning. The bleeding (spotting) did not stop for at least 2 or 3 months, then my periods became obsolete. The cramps were there but that was it. That I could deal with. the most frustrating part (besides the pain) is the weight gain. I gained went from 110 to 136 pounds! Something I have never weighed until I got pregnant. I have always managed to keep my weight under control until my IUD. No matter how much I eat right or work out, it just doesn't seem to come off. I won't even get into the emotional roller coaster... All-in-all, had I known any of this before I got my Mirena IUD, I would have NEVER gotten myself into this mess.

....please do comment on my story.



Truly,


Diane
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Hello....I have had my Mirena removed after 5 years. I thought it was the best thing ever & recommended to everyone. It stopped my heavy bleeding & I had no periods at all! I felt like a new woman.It was brilliant!!After about 1 year I started to get what I thought was thrush..about once a month & treated with pills or creams & it would go away...until the next month. I was surprised as I had never had thrush before. This carried on for a couple of years....I started to get very sore & of course sex was not such fun anymore. I talked to the doctor & she said it wasn't thrush at all..the mirena was making me extremely dry.The creams & pills I had been using were only masking the symptoms. She gave me hormonal replacement therapy...which I thought I was way too young for....it gave me some relief...but my moods went crazy....My man told me to stop the HRT because of what is was doing to me....& the headaches were shocking. I felt sooo much better off the HRT....but the dryness was getting progressively worse & the Mirena was causing the lining of my uterus to thin too.Sex was getting more painful everytime & I would rub raw & have to heal before the next time(even with lots of KY). My sex drive disappeared. The Mirena was wreaking my relationship. The choice was... have no periods & no sex & lose the man....or remove the mirena & hope my body would fix itself. I so didn't want my periods back, but I am way too young to be a nun. Anyway the doctor reluctantly removed it(I didn't feel a thing). I bled the next day for a few days, then it stopped. 2 weeks later I had my first proper period & they have continued as pre mirena(I still hate them). Its been out for 4 months...I have  dealt with severe mood swings, headaches, sore boobs etc.I take lots of vitamins to assist. I have noticed a steady but slow improvement in the dryness(no thrush symptoms) I feel so much happier in myself..not sure why? I am sleeping so much better... after suffering really bad insomnia the last couple of years. So I am coping better with the kids..... So from my own experience I think perhaps the mirena should be used for a maximum of say 2 years...then have a break for a year so it doesn't stuff up your sex life. I think it induces early menopause symptoms..yes that's right...I was starting to get hot flashes on the mirena....& I'm not menopausal!!! Yeah I think 5 yrs is too long..they need to research the effects more & take notice of what ladies are experiencing. Oh my hair is thickening up too...It had gotten really thin, my sex drive has returned..vroom..vroom. For ladies with the mirena, just keep an eye on any subtle changes before they sneak up on you. Doctors will not relate any issues you have with the mirena.Make your own judgement....you know your own body...good luck :-)

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I have the mirena a little over a month and it was the worst mistake ever. I feel ill and mean all the time. I even started having panic attacks and feel as if I cant breath sometimes. I feel like I may be pregnant becasue the mood swings are horrible and I am feeling depressed. I am 22 years old and I prefer to use a condom than this. Just my opinion. I will have it out soon. I cant wait becasue I feel lost with this thing in me. Its not normal and I dont think God recogmends us to do this. Thats why we are all having problems with it. And it causes cyst. Was I crazy. MAn I want this out forreal. I even get nausios sometimes. I know it will free me what I am going through.
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I much rather be pregnant than feel like this.
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wow thanks so much for the info, I thought that I was going crazy, and taking my family with me(my husband sent me to this site).  After 10 months of feeling off I read all of your posts and thanks to all I calmly walked into the bathroom washed my hands and removed my own mirena.  No pain sort of like removing a tampon.  
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My gosh...I was just doing a little checking before having my Mirena placed next Monday. I'm 45, a little early for menopause, but not too old for pregnancy. With two toddlers, we just didn't want to take any chances on #3, and I didn't want to take BC anymore..yuk on taking chemicals everyday.  I am going to cancel my appointment in the morning.  I am not easily swayed, but reading the 100 or so posts has done it for me...no reason to take a chance...there are so many other options for birth control.. none perfect, but certainly some better than what this sounds like.  I don't know what women did before the web...so much money spent by drug companies to have doctors act as their salesmen.  I'm sure it works for some, but I don't want to see if it works for me at the risk of losing my mind, my skin, my sex drive, my temper, and possibly my life.
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Now Im scared to death to go and get a Mirena put in. I have an appointment in two weeks to get it done...I just may change my mind....I did however have an IUD put in in 2000 after my son was born and after reading this, I am sure I had alot of these symptoms with that one, but was told repeatedly by my doctor that it wasnt from the IUD. I had Headaches, no sex drive, and cramping all the time.  I had it removed after only being in for 8 months. So now that I have read all these...I am starting to wonder if maybe I should just get my tubes tied.
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Hi Friend!

I am sorry I have not been monitoring this site in awhile. I will try to come back more often to post! I am sorry to see that you are still experiencing the bleeding! How are your other side effects? Have you been keeping a journal of your side effects for reference? This may be helpful. Really the most helpful thing would be if the side effects just went AWAY!!!!! I am thinking of you friend and wishing you well! Hugs!!!!:)
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Hi there,

I am so happy that this site was helpful to you. I am concerned that you pulled the Mirena out yourself. There are plenty of women who have done this successfully however there are some risks and I would encourage you to get an exam done to make sure that the Mirena did not pierce anything on its way out. How are your side effects after removal? It will take your body some time to right itself again post Mirena but hopefully it will happen quickly. There are many women who feel better pretty quickly after removal. Please keep us all posted with your progress! Hugs!
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Hi Diane,

I am so very sorry to hear of your suffering with Mirena. It is unfair that the doctors try to say this is a miracle BC for all women. Clearly the fact that there are so many of us who have suffered or are suffering is reason to rethink this "miracle" label they give to Mirena. I saw a specialist recently for previous head trauma I sustained in 02' and he told me the Mirena should not have been recommended to me because of my memory, brain issues. He told me the hormone in Mirena attacked this weakness in me and I experienced worse memory problems, brain fog, concentration issues, to name a few. I shared this info with the OBGYN who inserted my Mirena and HE HAD NOTHING TO SAY! His so called miracle birth control theories did not hold much water after a fellow MD gave credit to my side effects being directly related to Mirena. I was almost completely healed from this trauma and wondered why after Mirena had been inserted I had an immediate relapse. I can promise the rage I experienced while on this BC would have put me and my husband in divorce court. I completely empathize with you my friend and I wish you a swift recovery from this Mirena! Please post back and let us know what happens! Take care and I am sending you some hugs too!!!!!!!:)
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Hi there everyone! For those of you who are doing well with Mirena I wish you all continued success. For those of you who have suffered or are suffering I send you my heartfelt wishes for a quick recovery and a healthy happy Mirena free future! Take care everyone and I will try to post back often!

HUGS TO ALL!!!!!!
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I just had my IUD removed and am anxiously awaiting my return to normalcy!  I had mine inserted six weeks after my third child was born and he is now 28 months old.  I have been complaining of my hair thinning for quite a while and everyone has just kind of shrugged it off.  Recently I went to my GP and a dermatologist and all they could tell me is that my iron was on the low side.  Feeling less than satisfied by that recommendation, I continued my research.  Fortunately I came across a website for a hairloss clinic in VA which states that most women's alopecia is hormonally triggered .. generally due to the synthetic hormones found in birth control.  Once I found that it was like a light bulb went off in my head and I realized that my hair loss started right after the insertion of my IUD.  In addition to that, I have been complaining to my doctor for the past two years about my weight.  I've had my thyroid checked twice and it's fine.  I was able to get in decent shape at one point during this timeframe but that required 1.5-2 hours per day 5-6 times per week of exercise.  As a working mom of three children ... who has that amount of time for exercise?!?  I have been battling with anxiety and have also developed skin problems and have completely lost my sex drive.   I am so happy to have found this website and others like it that tell the truth about the common side affects of this drug....one that I clearly should have researched more before having it inserted into my body ....something I thought about right after it was put in.

If anyone else has suffered hair loss and then had the IUD removed .. please let me know if the hair loss stopped and if new hair started to grow again .. I'm keeping my fingers crossed!

Take care ladies!
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Thank you to all of you ladies who have taken the time to post your experiences, be it good or bad.  I was scheduled to get the Mirena in about a week.  My N.P. was also not entirely honest about the side affects; and a few of pointed out-just as I had noticed, that the pamphlet does not offer complete info so that a woman can make an informed decision.  I suffer from many of the things mentioned without Mirena: (high blood pressure, PCOS & had gestational diabetes twice (both of these things affect your insulin resistance already) Hypothyroid, depression, anxiety, fibromyalgia pain, adult acne, migraine headaches, attention defecit disorder, I am overweight & have a number of risk factors for stroke and Type II Diabetes)  I physically, nor emotionally can tollerate oral birth control pills ( I get EXTREMELY DEPRESSED), I already have mood swings and terrible PMDD.
Yet my N.P. was willing to insert this device into my body
-when it could clearly exascerbate most of these conditions I already have!!!!!!!!!  WHY????  How much money are practitioners making off this thing???  A lot of pharmacuitical companies give kick backs to their highest sellers, big vacations etc...  It's a scarey world we live in!!
I'm so glad the person in my doc's office couldn't answer my question re: if the Mirena was effective immediately, which is all I came searching for, and thank GOD and the rest of you LADIES for what I have found.  Thank you all for saving me !!!!! Things happen for a reason!
I sincerely hope that those of you who have suffered, fully recover, and continue to spread your knowledge to other women so that they too can make an informed decision that is appropriate to their own health issues.
No one knows our own bodies / health the way that we do.
Sorry for what all of you have been throuugh.  Hope that better days are ahead for you.
Know that you are helping others & smile!!
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Just remember ladies - all of our bodies are different and we all react differently to medications. Nothing is fool-proof and no method of birth control is right for everyone.
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Hi, I just wanted to say that regardless of all the bad experiences listed here, i am going in April to have the Mirena inserted.  I think it's really important to remember that the people that talk the most about their experiences are the ones that have bad experiences because it's traumatic and they need to get it out of their system, which is understandable.  My doctor recommends this for me due to the fact that I am only looking to slow my periods.  My boyfriend is fixed and therefore bc is not needed.  i never had an issue on any pills and there are many things that can cause anxiety/depression.  I already have these issues and am already being treated for them.  I have never had any acne problems...never had any problems on the BCP, didn't have any problems after pregnancy except for hair loss as i grew LOTS more hair during my pregnancy :)

Also, stress and anxiety can cause you to have less patience...so the anger towards children who are constantly pushing our buttons anyways :) would be a normal thing to experience.  I think any changes in hormone levels in the body whether localized or not are going to cause some reactions as your body adjusts...so I plan on trying it and will stick it out for a year and see what happens.

Also everyone has a different tolerance level...so others might be fine with certain side effects, and others might not be able to deal.

I do have one question though of those that had recurring yeast infections.  Did you ever have yeast infections before having the IUD?  I have never had one in my life and am not prone to them at all so I was just curious.

april

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First, I have to stress to those who are saying they were not told of the side effects for the Mirena, you must not have looked hard enough.  Not only is their own site fairly clear a web search of about.com and webmd.com reveals a list that includes all of  what you have mentioned above and then some.  And second, have the thing removed if it's not working for you.  I read this site carefully and printed out a list of side effects found elsewhere that I carried into my doctor's office.  And we deciced together that this was still the best soultion at the moment to ease my VERY heavy periods that casue extreme anemia.  I am five weeks into my ownership of a Mirena and have a few side effects - I wish the bleeding and spotting would stop already!  But I am giving it six months and will see where I am at that stage.

And lastly, please remember medicine is a business, somebody is trying to make money from these things and they do not always have YOUR best interest at heart.  Question everything and arm yourself with all the information you can.    

J
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Hi there,

A lot of women trust their docs and the shortened pamphlet that is given to them when they go to the doctor. I was armed with all sorts of facts and the doc dismissed them. It is not just as simple as saying "you must not have looked hard enough" because Mirena has only been around for a short time and not all side effects that women ARE experiencing have been accepted by their doctors as side effects. If you go to the actual Mirena docs prescribing site( I will post it if you want it), this is the actual info that should be handed out to the patient.

Make no mistake that side effects can happen at any time and the goal of women sharing their negative experiences here is only to give awareness. There have been quite a few women who have posted that are doing great on Mirena but most have mentioned that they are watchful and aware of the possible side effects. The bottom line is this, WE are the ones who have to live with our bodies, not the docs. If you feel the positive outweigh the negative with Mirena then that is great and I for one will be cheering you on. If however this is not the case the benefits of Mirena need to be revisited.

You are absolutely right about Mirena being a business. For each one the docs insert they get $ in their pocket. What bothers me the most about docs and their "miracle BC Mirena" is that they are so arrogant to ignore their patients concerns and dismiss any notion that their precious Mirena could be the cause. It is not only Mirena they do this with. There was a study done in the AMJ that showed legitimate side effects were being dismissed by docs on a regular basis because they hadn't made the cut in clinical trials. Just because it is not in the "listed" side effects this article said that there were real side effects being dismissed by docs because they were "not listening to their patients."

I am glad to have you here gardenerJ and I hope you are one of our success stories with Mirena. :) Take care!
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Well said! Our bodies ARE different and all the more reason to listen to them if they start talking or YELLING in some cases! Sometimes, the problem is simply we aren't aware that a medication we are taking IS the cause of some of our health problems because we have a doctor who isn't validating our concerns. Just my thoughts! Take care!
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well... i just wanted to mention above that not everyone's experience is negative.
people are also more likely to complain about something than praise it.  

i am sorry that you ladies have experienced so many difficulties related to having an IUD.

for some people, it is not a good option.  for others, they can't imagine anything else.  being 19 at the time with no children, i was NOT an ideal candidate for an IUD- But i have been tremendously successful with it for the past 4.5 years.

it's a toss up.  people don't tend to form groups to praise things.  


as far as the money aspect is concerned, i do know that the actual COST of the IUD is very high for the doctors.  in my case, because my insurance did not cover contraceptives or the appointment to have my IUD inserted, my doctor gave me a 25% discount off the total bill.  this was amazing of them and I essentially had my insertion for free.  

i realize that not every doctor is like that... but it's not about the money.  i don't think that they care if i take a pill or have an IUD- i doubt that they take commission.  

all i know is that it's been good to me and has changed my life for the better.  it's a shame that not everyone can have such a positive experience with it, but alas all of our bodies are different and react differently.  what works for you may not be good for me at all & vice versa.

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I got my mirena in 8/2004 6 wks after my daughters birth ( never had a period, exculisely breastfeed for 2.5 years) just had it taken out a 3/18/2008.. but the cause of removel  was I've had other health problems that docs couldn't find out whats causing dizzness, legs swealling up, waking up stiff so bad it was hard to walk down stairs without putting hands on railing and wall, bad acne, excess weight gain and loss. 5lbs in a day to week 25 lbs gaining and lossing. getting a secon opion on uturin pain she said I had cysit rupture, a bit odd between 3 ob visits had several pregnacy tests done.

My concern is on 3/6/08 intercouse lead to a cyst rupturing, the timing of that to lenth of firtlization, implating to removel of Iud 3/18/2008 and having light pink spotting for a week now I am  wondering could I be pregers.....  the tests from the docs were neg but I am very liree, saspisous of them, the timing has the fromula of Posiblities of Pregnecy.. I am just over thinking this..
ak2008 off in wondering land... If i am then let it be if not phew but letting my body breath..

After I had my Iud out my body felt a sense of relief, reawaking I felt better but still had uterine spamazimes, fellings of having 10 fingers shocking my uturies.... My ugly acme cysitic like almost MERA tough popping... Oh yeah I had M.E.R.S.A  superbug on my arm while my iud was in me in 2006.....

I agree with all other who fell that the poor health was from the IUD, I am glad my mom was on my side.. even though the merina 15 years old but the my mom, her friends have said negitive things about copper iud's in the 70's and 80's ....
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Hi there,

Thanks for your post! I am so very happy to hear of your success with Mirena! I hope you will come back and share your positive take on the Mirena. There are women who do GREAT with it. I have quite a few friends who have it and love it. I am seriously jealous LOL!

The doctors DO get kickbacks for giving Mirena to their patients. The Mirena is to the OBGYN practice what immunizations are to the peds docs- bread and butter.(the pediatric docs get a lot of $$$$ for giving those shots) There is a growing trend among OBGYN's to recommend this Mirena as a "miracle BC" and dismiss concerns regarding side effects with their patients. This disturbs me because it shows that the docs may not be looking out for their patients and may instead care more about their pockets. It is too bad the good docs seem to be few and far between for a lot of us on here!

Well, I wish you a very Happy Easter and hope you will post back from time to time to give us all updates! Hugs!!!!
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Wow, I am so very glad that you found us and the info helped you make an informed decision about Mirena. Based of the health conditions that you listed, Mirena really would not have been a good choice and shame on your NP for being so incompetent. Everything does happen for a reason and I wish you a happy healthy future! Happy Easter too!!!:)
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Hi there friend!

I am sorry to hear of your suffering with this Mirena BC. How are you feeling now? Were you able to find out a definite answer about if you are pregnant? Please do let us know how you are doing! Hugs to you!:)
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Hi there,

I wish you all the best with the Mirena and I hope it truly works for you. I have one concern to mention and it is this: Mirena can mess with hormone levels and it is important to mention this because many of us experienced mood swings, rage, and debilitating depression on Mirena. I am not saying this will happen because unfortunately it is only known if it will affect you this way AFTER trying it. I think it is best to be armed with knowledge as a precaution since you mention being under a docs care for depression/anxiety and Mirena can add to this. Just something to watch for! I am hoping it works out for you! Please take care and post back! Happy Easter wishes to you too!!!!:)
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Hello,

Thanks for your post! I did not experience hair loss but I did experience my hair turning grey AFTER its removal. It has not gone away completely and I am 8 months after removal. It has gotten better. My doc thinks that it was from a hormonal imbalance that happened because of the Mirena being in and then its subsequent removal. I do hope this side effect gets better for you. I used to go over to Curezone's mirena IUD site where they have many informative posts and it seems to me many of the ladies there have discussed hair loss from Mirena. Maybe it would be worth a visit. Take care and please do post back and let us know how you are doing! Happy Easter!
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Here are some site to visit to see side effects from Mirena. I haven't posted them in awhile so I thought I would put them on here again! Take care everyone!




****

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Hey girl) haven't heard from you for a while. Since march 2008, which is about 5-6 month since i have mirena inserted bleeding finally stopped! Thank God! I experience right now only one issue - one month i have no menstrual bleeding at all, not even spotting, the next month it's going to be a heavy flow for 6 days as if i have no IUD at all. I'm going to check up with my doctor i guess, because i can't explain it. And my skin is still a mess. All the rest of the symptoms are gone, and i am so happy about it. I'll keep posting about any changes.
Hugs!
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Hello there my friend! I am so glad to hear from you! My life was so hectic and busy for the last few months I did not have any time to come and post here. I am so glad to be back and so happy to hear that you are doing well! YEAH!!!!!! Hopefully your doc will be able to shed some light on the irregular cycle. Does she think it will work itself out eventually? What does she say about the skin problems you are having? I hope like your other side effects that this one goes away too!!!!! I will be looking for your updates and sending you wishes for continued health and well being!!!!!! Take care Avrora! Hugs back!!!!!
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Hi everyone,

I will try to post these again. They got deleted somehow in the last post. Take care all!


http://www.contracept.info/docs/mirena-doctors.pdf        

http://www.netdoctor.co.uk/medicines/100001706.html

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Hello.
     I have a 3 month old at home and was interested in trying this until I read all of the stories. I have had a hard time finding info so thanks for the sites. I really want to check it out for myself and then decide. One thing I am really concerned about and can't find is cost. Can anyone tell me a ballpark figure? Again, thanks for all of the sites.
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Has anyone tried Mirena as an alternative to progestin-only pills? I have had no problems on Nora-BE norethindrone (generic) and since Mirena has theoretically the same hormone, maybe I could expect similar effects?
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I have the iud i have had it for a year i love so far other then the extra pounds. i had a horrible time with the patch so after i had my last baby i chose the IUD. we have 3 girls and we want to try later for a boy. lately my Brest have been very tender i wonder if that has any thing to do with IUD?
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Peekawho. Thank you for educating the people who may otherwise be listening to wisegirl (uh... pun intended).
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Hi,
i think the price depends on the area, i paid in California about 500$ and my insurance didn't cover it, insurance is aetna
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Hey girl, how're u doing? Well the updates are the following, my doctor told me that my periods will stabilize , when ...well sometime LOL, skin is a mess because of hormones, skin is doing slightly better though, periods are still like a total mess, yeast infection is now my constant friend, and being emotional is something that is killing me, no matter what i see or hear i start crying and can't stop myself...and i am a woman who'd never ever cried before .... like ever...the rest is ok LOL
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Please read through all this information even if you don't think all these symptoms apply to you.

An autoimmune disease called Behcet's Syndrome's initial symptoms closely resemble the herpes virus, causing vaginal sores, cuts, fissures, folliculitis and or inflammation in the genital area. Other symptoms develop many years later. It is different in everyone who has it. The immune system is in over drive. It is an autoimmune disorder caused by enviromental damage to your immune system.  It could get better or worse, depending on how well you take care of yourselves and how well you are treated.

My symptoms started at age fifteen with itching, inflammation, then folliculitis (ingrown hairs), then cuts all over the vagina from time to time. It is different for everyone who has it. Some people just have inflammation where others may get cuts, or sores aswell. Folliculitis is a type of acne and is very common in Behcet's and occurs during or before a "flare" and can be on the face or anywhere. Chronic yeast infections and BV come hand and hand with Behcet's because it is a immune system disorder that weakens the immune system because the immune system is working in over drive. You are now allergic to more things. It is not contagious and it doesn't run in families. Researchers around the world think it is triggered by strep throat or from other enviromental causes. It has been proven to not be genetic. Gential to Gential contact will cause a reaction "flare" in these people, so will a common illness, injury, or stress. It is very important for people who have this to rest often, use condoms, and take good care of themselves to avoid flares. They will also need medication like steriods and or immune suppressants, depending on their case.  Someone who needs a lot of medication to start, might not need that much with a little time. Common symptoms later in the disease, if it goes untreated, are digestive symptoms, bowel inflammation, possible bladder inflammation that feels like a bladder infection, arthritis, fibromyalga, and very late in the disease serious eye inflammation and possibly central nervous system involvement. People rarely die from this illness, the main thing a person has to be worried about is quality of life. That why you want to be proactive, not scared. This disease can be managed if properly treated.

For about ten years I had the gential symptoms and was sure it was herpes. My doctors said there was nothing else it could be wvwn though all my cultures came back negative and never mentioned it again. None of the medication for herpes had ever helped me and I also noticed my husband never got sick from me. The inflammation was the worst and I was using hydrocortisone on my own by then for some relief.

I started having other symptoms like irritable bowel syndrome and fatigue. Then after I had two children my symptoms got a lot worse. FIbromyalga, Interstitial Cystitis, Epi-scleritis (inflammation of the small blood vessels in my eyes), and things like that. My immune system was attacking my body. It took years before I had enough symptoms and saw enough doctors to start getting it treated. They are still not totally sure what is wrong with me. There is a lot of misconceptions about these things because they are thought to be rare. The truth is that they are just highly under treated in the United States. They think I have something called Behcet's Syndrome, the world's oldest known disease. It is an autoimmune disease that can be very mild or more severe. It is hard to tell what it is unless you are able to get enough of the symptoms well documented and you have just the right symptoms even though your symptoms might be totally different than everyone else's symptoms. The stress in your life plays a big role in how bad your flares will be.

There are no tests that can tell if you have Behcet's. It is based on symptoms only. Vaginal symptoms that look like herpes (herpes causes inflammation, cuts, or sores), canker sores in the mouth at least three times per year, and inflammation in the blood vessels in the eyes. It can take years for enough of the symptoms to show up and they usually don't show up at the same time. You really need to fight for answers. Go to the American Behcet's Association for more information, but remember when you are there, those are the worst cases, most people with Behcet's don't have it that severe and do well with treatment.


I don't have an offical Behcet's Syndrome diagnosis yet is because I have yet to have any serious organ damage documented, which can actually be really hard to do. Not everyone has to wait as long as I have been waiting. A lot of the time small damage from tissue and blood vessel inflammation can not be seen by any tests. Often, surgery is required for them to find vasculitis. That is how they found vasculitis in me during surgery looking for endometriosis. If it wasn't for that I wouldn't still be waiting to start treatment. I am lucky because my symptoms have not been as serious as some, but it has also been a big problem because I have been suffering greatly and not gotten the help I needed many times. Most of my symptoms cannot be seen and it's been very hard to prove that something is wrong.  I have had to fight back against people thinking this was all in my mind. I have had to find a medical cause for my symptoms on my own and a lot of time was wasted because it came on over a long period of time. Only one of the hundreds of doctors I've seen had ever even heard of Behcet's Syndrome, he was a GI doctor. They do not look for it. One doctor, my Rheumatologist, told me he didn't even believe it existed. This disease is very real. It's treated all over the world, but most American doctors no nothing about it. They do not know the symptoms or how to treat it. They rely on old information and still think it only happens to people in the middle east even though research has shown it happens because something has damaged the immune system and not because of your genes. It does not run in families and it is not always a text book case. You would think it would show up on MRI's, but often with Behcet't it's the very smallest blood vessels involved, and those don't show up most of the time. It takes a big incident for them to see it and prove that you have it . American doctors don't want to be liable for treating anything until they have enough medical proof to be sure that you require the treatment. It is not easy to get that far. For us, it is more important to get the treatment before something bad happens, not afterwards. I have all the symptoms and I am being treated with immune suppressants and I have had several doctors diagnosis my symptoms as Behcet's Syndrome, but with this disease the ultimate decision is up to the Rheumatologist. My rheumatologist says it shouldn't matter if I have an official diagnosis as long as it is being treated. He says he is more concerned right now that I will lose my ability to qualify for insurance once I have a diagnosis. One thing to look for as far as tests are concern would be a a slighly high white blood cell count...your nerophils mainly, but others white cells also. It could mean just that you aren't feeling well at the time to have it be a little high, but if you can gather your records and show that you have an on going problem with a high white blood cell count, that would be a first step in showing your doctors something is not normal.

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One more thing....I've seen over twenty GYN's as well as other doctors and I did my own research on the possible causes for the inflammation and for the cuts some people with Behcet's Syndrome get. I can tell you from what I have learned  that these symptoms are not caused by any type of HPV. They also would not be caused by Herpes 1 in people with no other apparent serious health problems like HIV. Bacterial Vaginosis and Yeast Infections may cause inflammation and small cracks in the folds of the skin, they do not cause cuts in center areas of the skin, and they heal without reoccurance once the infection is treated. An anal fissure can sometimes occur in the center area of the pernium (between the front and back) because of straining or constipation. Unless you have developed more than one cut at a time at some point, or have developed cuts in different areas of the genitals other than the pernium, a pernium cut may just be a fissure. An anal fissure would be a single cut that keeps happening in the same place over and over again on in the center of the pernium. An anal fissure is caused by repeatedly tearing open the thin skin in that area from straining. Not like the small cuts that just happen for no reason the way they happen with the Herpes Simplex Virus and Behcet's Syndrome. I have one cut the comes back over and over again on my pernium area, but I also get cuts in other areas from time to time aswell along with severe inflammation. All of my hormone levels are normal. Those are the only things I've found that could be the possible causes for these symptoms. Just having the inflammation is a symptom, not everyone get's the little cuts. Not everyone get's full blown Behcet's either. If you take good care of yourself, you can do really well.


I wanted to add I have herpes 1. Just about everyone has it. It should not be causing your symptoms unless something is wrong with your immune system. I had the new herpes blood test that showed I have herpes 1 but not herpes 2. We started doing culture after culture of my cuts trying to see if it was herpes 1. I have never had a culture come back positive for anything. It took a long time to prove it, but we have finally established my cuts are not caused by herpes 1. Herpes 1 is much milder than herpes 2 and should not be causing ongoing vaginal symptoms. If it is, it still says something is wrong with your immune system. The white blood cells were the only thing they could find abnormal with my tests. They found them in my blood and in my cultures every time I wasn't feeling good. For years they would say, well that's because you're not feeling well today. Until I gathered 15 years of records showing that I am not feeling well on a regular basis, that was the first clue.

I am determined to tell as many people about this disease as I can. Look around on this message board and you will be floored with how many woman are having these symptoms and have not gotten any real answers from anyone. It makes me sick. It is really all about money. This disease pushes doctors out of their comfort zone, it forces them to  work harder than they are use to doing, harder than a lot of them really are will to work. Infact, they have designed a system to help them avoid people like you. They will send you to specialist after specialist making money off your insurance company hoping eventually you will just give up and quit faking it. It is the idiology that nothing bad happens to good people. That you just need to toughen up and quit complaining because you look normal and your tests are fine. It would cost a lot of money to treat us, so they ignore it and only treat those who are on deaths door and tell them they couldn't have known what it was because it's so rare. The justify it to themselves by pointing out there has are full treating the things they do know about. I think it's time we send these doctors back to school and up the patients right to sue doctors that doctor meet our expectations. Why should anyone need to settle for less. I believe any halfway intellegent person would have been able to put together what has been happening to us a long time ago if they were at all interested in finding out.

One thing I know is woman with Behcet's have a lot of problem's with their periods. Their periods often bring on flares. They can have inflammation in their uterus which leads to extra period cramps and may lead to heavier bleeding.

I mentioned to you that I had surgery looking for endometriosis. I was given many different types of birht control when they thought that was what I had. From talking to other woman with Behcet's and from what I experienced, all of the different birth control medications I took made symptoms a lot worse. I do not know why exactly, but I have not come across any women with Behcet's who did not have some problems with these drugs. I took depro, a lot of woman have problems with that, but I also tried an assortment of different pills that al caused my flares to get really bad. When I would come off of them I got better. The last thing I tried was the Mirena IUD. I would recommend this to other woman, but not to woman with my problem. My GYN didn't realize how inflamed my uterus was, he thought is would help everything get better, and for most woman, I bet it would, but not for me. It was pure agony.  I keep waiting and hoping the pain would go away, that it just needed to settle, but it never did, I had to have it removed. I believe the Nuva Ring, just like the Mirena, has a small amount of hormones in it. This might be the problem, it seems even a little bit of these hormones can trigger a flare. As long as all of your hormone levels are normal you should avoid them at all costs. With Behcet's you are at risk of vascular inflammation which can lead to things like strokes, so horomone suppliments of any kind are a really bad thing for people with this problem.

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Don't just let your doctor tell you that you have a hormone problem just because that's what it looks like. Make sure they checked your homone levels. Also, see a dermotologist to make sure your acne is not actually folliculits which looks like teenage acne, but it's not.
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Look around on this message board and you will be floored with how many woman are having these symptoms and have not gotten any real answers from anyone. It is really all about money. This disease pushes doctors out of their comfort zone, it forces them to work harder than they are use to doing, harder than they really want to work. It is not like t.v. Infact, they have designed a system to help them avoid people like you. They will send you to specialist after specialist making money off your insurance company hoping eventually you will just give up and quit faking it. It is the idiology that nothing bad happens to good people. That you just need to toughen up and quit complaining because you look normal and your tests are fine. It would cost a lot of money to treat us, so they ignore it and only treat those who are on deaths door and tell them they couldn't have known what it was because it's so rare. The justify it to themselves by pointing out there hands are full treating the things they do know about. I think it's time we send these doctors back to school and up the patients right to sue doctors that don't meet our expectations. Why should we be threaten by doctors who won't treat us without all their fancy medical insurance. Why do we want doctors like that? We shouln't listen to these threat. We should demand better of them. I believe any halfway intelligent person would have been able to put together what has been happening to us a long time ago if they were at all interested in finding out.

One thing I know is woman with Behcet's have a lot of problem's with their periods. Their periods often bring on flares. They can have inflammation in their uterus which leads to extra period cramps and may lead to heavier bleeding.

I mentioned to you that I had surgery looking for endometriosis. I was given many different types of birht control when they thought that was what I had. From talking to other woman with Behcet's and from what I experienced, all of the different birth control medications I took made symptoms a lot worse. I do not know why exactly, but I have not come across any women with Behcet's who did not have at least some problems with these drugs. I took depro, a lot of woman have problems with that, but I also tried an assortment of different pills that al caused my flares to get really bad. When I would come off of them I got better. The last thing I tried was the Mirena IUD. I would recommend this to other woman, but not to woman with my problem. My GYN didn't realize how inflamed my uterus was, he thought is would help everything get better, and for most woman, I bet it would, but not for me. It was pure agony.  I keep waiting and hoping the pain would go away, that it just needed to settle, but it never did, I had to have it removed. I believe the Nuva Ring, just like the Mirena, has a small amount of hormones in it. This might be the problem, it seems even a little bit of these hormones can trigger a flare. As long as all of your hormone levels are normal you should avoid them at all costs. With Behcet's you are at risk of vascular inflammation which can lead to things like strokes, so horomone suppliments of any kind are a really bad thing for people with this problem.




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Hi, look when i just started reading your post i was horrified because it seemed to me i had all the symptoms. I started using UID Mirena just recently, 8 months ago. And right after that i went through a lot of serious stress lasting up to 6months, and one day developed some vaginal cuts or sores just as u  have described. And i'm married! In fact just got. And doctor diagnosed me with herpes i believe type 2 as it's genital, but i really hoped it is not what she said because my cuts are very small with no inflammation. So i was reading carefully yr post, but u've said that your results came back negative to herpes type 2, and i don't have type one but came back positive for type 2, and my husband is clean. So i sort of confused now, how is it possible ... but none of the GYN i went could give me an answer
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What herpes test did you have to determine you have herpes 2? For ten years I was told I had herpes 2 even though my cultures were coming back as negative because the doctors all thought by the appearance that there was nothing else it could be. If you aren't sure, you have to find out if your cultures were actually ever positive. Another thing that is possible is to have a false positive culture. The cultures are not very accurate. The good news about this is that they came out with a blood test just a few years ago that can tell for total sure if you have herpes 1, or herpes 2 or not. So you have to have the blood test to know for sure. I recommend anyone who thought they had herpes to get this test and make sure that is actually what they have. If you have any questions about anything in the future please feel free to ask. I check back regularly.
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And don't forget, herpes 1 does not cause genital symptoms in people unless they have a seriously damaged immune system.

Researches believe it may be caused by Strep throat. Like many people with Behcet's,  I had a bad strep throat infection just prior to my first symptoms. It could also be trigger by other things in the enviroment they still don't know for sure.
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i'll do the blood test first thing, because my GYN was insisting on not doing it because as she said a culture test is enough, and i had serious doubts about that.
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I  have had my Mirena IUD for over 2 years.  I have suffered only a little of the side effects that most of these women have had.  I do feel more tired all the time and unmotivated which is not like me.  I lost my Dad just before I had mine inserted and put the lack of energy down to that.  I have also had some moodiness and slight depression.  Reading all of these articles have seriously making me think of getting mine out.  Other that some of these symtoms  the mirena has been a good BC for me.  My question for myself now, is it worth taking the risk of keeping it when there are chances that it is effecting my wellbeing.  Thank you all for your letters and all the best for others with Mirena IUDs.  I will let you know what I decide.  Also im from New Zealand.
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514585 tn?1328743613
I was on the Merina IUD for 4-5 yrs and recently got it taken out...whoo hoo.
I am 34 and have been preg 5 times with 3 children as outcomes...2 of those were mid term miscarriages....in which i had to be induced and deliver.
I have never had a problem with fertility before, and now i am having issues with AF and such and was just wondering how do i tell what is ovulation spotting, implantation spotting, or just a irregular period? or even my period.

I went in april 21 to get a pap and was spotting, then went in may 2 and was bleeding...had IUD removed, doc said that on the 2nd i was bleeding heavier than on the 21st.  which makes me think that it was AF.  i am not spotting now, so could my cycles just be leveling out, or should i watch for when i am suppose to start?

also whether it be by masturbation or intercourse...when i have a orgasm, i have been spotting...this never happened before i got the IUD or before it was taken out, could it just be my cervix response from the trauma of the thing being pulled through?

thank all...and i sprinkle baby dust on all of you who  want/need it....
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Hi there!  I am 36 and have had my IUD for almost 4 years.  My husband and I have decided to try for a baby so I am having my IUD removed this July.  Can anyone give me an idea of how long it might take for me to conceive after removal?  I am no spring chicken and would like to be pregnant within one year.  I got pregnant really quickly when I had my daughter but that was 16 years ago.  How much might my age affect my conception after having the IUD removed?

By the way, I have been a Mirena success story.  I have had no problems at all and have really enjoyed the light (almost nonexistent) periods.

Thanks!
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I am a Mirena user, recently had it removed on June 10.  I had it placed in 2004, 6 months after my second daughter was born.  My periods gradually stopped, that was wonderful, but now I am worried that they won't come back to get pregnant, we want to try for another one.  Though it's only been a few days, I'm feeling some cramping.  Now I'm wondering if it's from the removal, which was painless, or if it's a period.  If there's anyone out there that can shed some light on this, please do so.  My doc said it could take 2-3 months to get back to normal.  I sure don't miss the cramps or anything else that has to do with this wonderful thing that women have been blessed with :)  But I will say this about Mirena, it was exatcly what I wanted in BC, something I didn't have to remember to take everyday, or place on myself, or go to the doc every 3 months, and if we are lucky to have another baby, it will be my first choice for bc afterwards.  Thanks for any comments!!


)I(  Jen0104
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I recently had the mirena put in and have so far been pleased.  My husband said the other night that he could feel the strings and that they irritated his penis.  It was scratched a bit and was uncomfortable for him.  DO the strings move easily or should I maybe have them cut shorter?
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Hello everyone! I had the Mirena put in about 6 months ago and had it removed about 5 weeks ago. I have developed an all over body itch (which can be a rare side effect of the Mirena) in the past few months. It usually helps if I take antihistamines, to subside the itch. Has anyone else ever experienced the itching? And if so, how long did it take to go away after the Mirena was removed? I just thought I would see if anyone was in the same boat! Thanks!
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I am very concerned, scared, worried, just to name a few.  I had my Mirena put in just a little over a year ago.  It sounded great and the doctor had nothing but praise for it.  The insertion was so painful... never wish to feel like that again, it felt like contractions!!  I chalked it up to not having a vaginal delivery (I have had 2 planned c-sections).  I bled for about a week, but have not had a period since.  I also lost all 24 pounds of my babyweight, plus an additional 30 pounds!  All that has been great!!  

However, recently (within the last 6 months) I have been having really weird feelings and been very emotionally distraught.  I have even accused my husband of cheating on me because he was texting a female (about 10 years older than him) co-worker.  And if I can't get a hold of my husband, I start feeling this feeling of dread and thoughts of "oh my god what if he is dead?" start filling my head.  My hair is falling out similar to when I was pregnant.  I feel terribly stressed all the time, and very alone, even though I have friends and I know my husband loves and supports me very much!!!!!  And the most recent trick my body is playing on me is hives!  It started only happening at night, I would wake up just hot and sweaty in the middle of the night, while my husband would be freezing, and then I starting noticing hives.  Now the hives appear whenever I am exposed to heat.  I live in southern Arizona, so this is totally unacceptable.  Doctors cannot give me a straight answer as to the cause but say it has nothing to do with the Mirena.  I have not used or eaten anything new, so that can't be it either.  I just passed it off as bad genes, until about a week ago a friend of mine who also has the Mirena also started breaking out with hives from the heat.  The only thing we have in common is our Mirena IUD's.

So I came to the conclusion that I need to get it removed.  I am going next Tuesday.  I figure take it out, see what happens, if it doesn't improve I can have it replaced, but if all goes back to normal... I know the cause!!!!!!!
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