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(Thursday, 23rd Oct, 2014)

Mirena Coil

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223 Posts

Canadian Liz  ·  13 Oct 2010

Never had a lumpectomy and it's not necessary and can't be done anyway as all 3 lumps are deep in and close to my chest wall.  Had a mammo, breast MRI, breast ultrasound, and a core biopsy on one lump (the other 2 are in too deep so a biopsy is not possible).  Just have to repeat the MRI, ultrasound, and mammo in January as scheduled.  Never had these issues until voila I got Mirena.

 

223 Posts

Canadian Liz  ·  13 Oct 2010

Anon, well I have plenty of experience from a medical perspective so I don't need to listen to others.  I'm in great hands with my gyne and we've already exhausted all options available to me.  Gynecologists in Canada always and only do hystos as a last resort, so it's the right choice for myself and something I've wanted done for quite some time.  It's being done with no regrets.

 

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Anonymous  ·  11 Oct 2010

Hi Liz, glad you got yourself a good specialist. Hopefully you'll have the lumpectomy soon and they will turn out to be benign. Given your family history, it may be a good idea to be gene tested also as a certain percentage of breast cancers have been scientifically proven to be genetic but this can ony be established in individual cases, by gene testing.

If you are wise, please listen to the excellent advice from someone as experienced as Barbie regarding such major surgery, the reason why doctors may push patients towars it, the effects, the real alternatives and possible reasons why less experienced doctors may be unwilling to try them .  

I'm sure there must a discussion on hysterectomy on this site too but if not, do yourself a huge favour and take a look at hersfoundation.org. It's a non-profit medical website all about hysterectomy, its effects and the alternatives.

 

223 Posts

Canadian Liz  ·  10 Oct 2010

Linnie, all of the above yes!  Many women experience such horrible side effects.  Tell your doctor to stick it!  Mine also told me to keep Mirena and I found a new gyne who removed it last Feb. Scroll back and read my personal Mirena story and what it's done to me.

You don't deserve to suffer.  It's your body and no doctor has the right to tell you to keep Mirena in.

I wish you good luck :)

 

223 Posts

Canadian Liz  ·  09 Oct 2010

Well got my referral to my new breast doctor and went to my initial consult and she's really great.  I'm all booked in for a mammo and ultrasound to check the 3 lumps in my right breast in January.  My gyne is no longer handling this issue and felt given my sister having breast cancer and losing her life to that, a breast specialist was necessary.  Hopefully these next round of tests will determine if they are benign or malignant.  It's a waiting game.

Having my hysto in less than 2 weeks because of Mirena and the damage it's done so that's all set up.

And have yet another body cyst so the toxicity of Mirena is not yet out of my system unfortunately.  Had 1 cut out last June, having another cut out this week and it looks like it will be 2 being cut out and stitched up not one. 

 

2 Posts

Linnie  ·  08 Oct 2010

I had merina fitted 7 weeks ago after D and C i have suffered severe pain and have been bleeding a lot i have been bleeding past 2weeks non stop although very light never the less very painfull i have been to me GP over past few weeks hetrys to assure me that it will settle down i also have pelvic adhesions which are adding to the pain he has given Primolut tabs to try stop the bleeding i would like to know has anybody else have these problems im in agony at the moment i just cant keep taking pain relieve i am wondering should i get marina removed i dont need it as contraception i had my tubes clipped 9yrs ago i had 2 c sections and that how i had pelvic adhesions had them cut and divided and ended up having 2 hernia repairs i have suffered for years now with heavy and painfull periods and midmonth bleeding but nothing like the pain im having at the moment did anyone else have similar problems?

 

134 Posts

barbie86  ·  28 Sep 2010

I'm all too aware of how chronic conditions can affect your personal and professional life Liz. I have had endo since the age of 12, and my symptoms include: excessively heavy and long periods (8 days of bleeding so heavy I would soak through a super tampon and night-time towel combined within under an hour); unbelievable pain (to the point of vomitting/nearly wetting myself because it took me 15 minutes to crawl out of bed and a few paces to the loo/being literally delirious and unaware of anyone or anything around me, etc) that no prescription painkillers help; pain during intercourse that is so bad I've blacked out; pain during bowel movements that it so bad I've blacked out (I have to cling to the wall and sink for support so I don't crack my head open); chronic fatigue; and, more recently, constant and debillitating back and pelvic pain to the point where to get through a shift at work I need to take 16 painkillers (2 at 2 hour intervals throughout the day). I am unresponsive to surgery and at 24 I am fated to another 25 years of being forced to stay on hormone treatments and ever-stronger painkillers to lead a semblance of a normal life. When I come to start a family, I may struggle to conceive, and because I will be unable to take painkillers or hormone treatments, will probably have to reduce my hours/days at work as I will be physically unable to work 3 days out of every month.

So yes Liz, having lived with endo for 12 years, I know what it can be like to live with a debillitating and draining condition, and I would never ever describe it as 'minor'. I am utterly thankful that hormone treatments help my condition, so currently the 'only' symptoms I have to deal with are extreme fatigue, constant severe back and pelvic pain, and pain during intercourse which makes my partner frightened to have sex with me (god knows how we'll conceive lol); I dread the day that I either can't take hormones anymore (eg when TTC), or that they stop being as effective.

My post re surgery was out of genuine concern; I am not an expert in gynae conditions but since my endo diagnosis have read a HUGE amount on endo and spoken to several leading consultants. I know enough to know that a hyst is major surgery (as my mum would tell you) and is NOT a decision to be rushed into, or an option to try before exhausting other options. I can understand that you want things to be over with, but please, please consider this carefully; maybe join a forum where women have undergone hysts or who have similar gynae problems and ask about their experiences, and what they tried first. I have seen so many women undergo hysts who haven't realised just how major an op it actually is, and how long it can affect you for both phsyically and emotionally and in terms of after-effects like the surgical menopause; I have also seen many undergo hysts for endo only to have their symptoms return a few years down the line, and these women now have no options left to them, as their hyst was a last resort.

I personally would seek a second opinion before even considering such radical surgery; endo ablation is NOT dangerous when performed by a skilled surgeon and most decent surgeons would want to exhaust other surgical options before performing a hyst. Unfortunately some surgeons are not skilled in less invasive surgery, which is why some jump the gun; I know one woman who's cons tried to push her to have a hyst as he said her severe endo and adhesions could not be treated laparoscopically; she sought a second opinion, had less invasive and radical surgery performed by a top endo specialist, and has delayed the need for a hyst by some years.

 

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Anonymous  ·  28 Sep 2010

Like yourself Barbie, I know of no good competent up to date doctor in Ireland (or France for that matter) who would recommend a major surgery involving organ removal over a less invasive procedure in the first instance. Certainly unheard of here.

 

223 Posts

Canadian Liz  ·  27 Sep 2010

Well all efforts to control the damage done to my body by Mirena have been exhausted so a hysto is the last resort and my only choice to stop my excessive, constant, heavy bleeding.  All tests have been performed to search for other causes of the issue and none exist.  Waiting for my surgery to be booked. 

I can't believe that some on here think it's a minor issue, but if it affected your personal and professional life you'd not make such insensitive remarks.

 

134 Posts

barbie86  ·  27 Sep 2010

Totally agree with anon.

There are risks to any surgical procedure, that goes without saying, but it is a case of weighing those risks up against the potential benefits, and also against the risks of other types of surgery.

I have had 2 laps in 18 months, the first with diathermy (basically, burning of the endo deposits), the second with deeper excision surgery. My recovery after both was fairly quick, and the treatment effective (after my lap and diathermy I could have pain-free sex for the first time in about 3 or 4 years, which was so nice). Unfortunately I have an aggressive form of endo so from now on will have to look at pain management, as while surgery is effective, it is only effective for me for about 1 year. However I'm glad I had both ops as I suffered no adverse effects and was pain-free after my first for about 10 months; hopefully I will get a similar amount of relief this time round, as I need it to recharge (I've been in almost constant pain since early Feb, with the biggest period of relief about 1-2 weeks).

Endometrial ablation carries risks but IMO saying a hyst is preferable is misguided. Hysts carry FAR more risks, and a far longer recovery period; done under keyhole you are still looking at a minimum of 3 months. Added to that you have issues such as the surgical menopause and HRT, as well as risks of osteoporosis. It should really be a last resort and I do not know any good doctor in the UK who would recommend one over less invasive surgery in the first instance. Also, I don't know whether you have endo, but they are now not recommending hysts for the treatment of endo, as the risks of recurrence stand at up to 10%, and the treatment of post-hyst endo can be very difficult to say the least. There are also issues such as for it to be effective, all endo MUST be removed, which depending on where it is or how microscopic it is, might not be possible; there are then issues of whether or not to leave the ovaries; if they are affected they MUST be removed, but this necessitates the need for HRT in younger women, which then in turn increases the risk of endo returning as HRT contains oestrogen which feeds endo. Very complicated and as such, an absolute last resort. Even if endo is not the issue, IMO a hyst should still be a last resort, not a first port of call; the surgical menopause is not pleasant, nor is taking HRT, which has it's own risks, inc an icreased risk of breast cancer. With ablation, the main risk is damage to the uterus (which is why it isn't recommended for those who haven't had children) in which case, if it fails, a hyst can THEN be carried out; but to carry out a hyst based on a small risk is IMO jumping the gun somewhat.

 

12,082 Posts

Anonymous  ·  27 Sep 2010

Hi Mozler, I agree.  People's opinions and view need to be respected in a forum like this. Everyones opinion differs but facts do not.

Yet again, Liz, no-one is mocking anyone. The product insert, must BY LAW contain scientifically proven medical fact. This is mandatory in order for the Mirena to licensed and available here in Ireland or the UK. Otherwise it would be impossible for any woman to have the mirena inserted in Ireland. I am glad to hear your application for disability is going well.

It is unfortunate that you are not made aware of all of the risks of Mirena prior to getting it. This is a mandatory requirement of all doctors here, prior to any procedure. A lesson to women who are thinking of getting it is research all the FACTS and ensure you have a highly competent experienced gyne. Anything less would be a disservice to women.

Furthermore, endometrial ablation is in my opinion not dangerous. It has been approved by the ACOG (Amercian association of Gynes) as well as the Irish and Bristish medical associations for decades now as being an extremely safe and highly effective, commonly performed alternative to hysterectomy - which is major sugery, carrying far fewer side effects with little to no long term effects occurent following it. Do the research, for your own sake. Any doctor telling me what you were told would find me running from the surgery and getting a second opinion.International recorded data indicate that the risk of burning is in fact minor. However, this is dependant on not only the skill of the surgeon, (like the mirena) but also the method used. There are several method ablation, which suit different patients. Yes, a small percentage of women can experience regrowth of the endometrium and need further sugery, but personally I would prefer a day procedure under local or spinal aneastetic which is very effective in most cases than opting straight for major sugery and organ removal which carries greater risk and requires months of recovery. Yes, birth control is required after ablation as ablation is not regarded as an effective method of contraception but if your family is complete, you could consider tubal ligation, which again, is a much smaller procedure than hysterectomy surgery. Again, just trying to help.The very tiny risk of mild clinical insulin resistance which has been reported in the U.S with the implanon has been medically confirmed as of no clinical relevance in normal healthy women. It is however, of concern in women who have diabetes, hyperlipidemia or polycystic ovaries who would need to be closely observed if they elect to have the implanon. It is extremely important that this is clarified.  

 

223 Posts

Canadian Liz  ·  24 Sep 2010

Anon, my gyne did discuss endometrial ablation but she doesn't do that procedure it on women because it's VERY dangerous!  A great risk of such a procedure is burning to the uterus beyond the endometrial lining.  Apparently in some women who have the procedure they end up having to have a hysto anyway at a later date due to the procedure having not worked and due to uterine scarring.  Birth control is required after the procedure anyway and I can only use birth control with progestrone, so my choices in that area are very limited and I'm already on Micronor and it no longer works due to the damage Mirena has done.  It no longer controls my bleeding and PMS and I refuse to have anything else implanted in me such as Implanon which causes insulin resistance in some women or diabetes.

 

223 Posts

Canadian Liz  ·  24 Sep 2010

Molzer, it's always a cat fight on here and such behaviour isn't necessary, but some clearly thrive on picking on others and mocking their plight.  It's been going on for a few years on purpose so I just laugh at  some posters who believe a leaflet, which doesn't list the true side effects of Mirena, is the bible.  Of course it won't, Bayer wants women to use their product so there not going to put true side effects in their procedure and there are LOTS Of side effects of Mirena.

You hit the nail on the head when you said in your post "people's opinions and view need to be respected in a forum like this".  I echo that sentiment, however, there are cliques on this board unfortunately. 

So I have a meeting on Tues with the government agency responsible for handling disability claims.  I've already been approved and will be getting my current income topped up due to my disability.  I'm at tests and medical appointments more than I work these days and suffering financially so approval came as a welcome blessing.  My transportation costs to and from my appointments and tests will be paid for as well.  I'll be getting a drug card, which will pay for medications and services that my current benefit plan through work does not pay for.  My application for provincial disability has been submitted and I have a meeting coming up about that too.  Once it's approved I'll be on permanent disability and not working at all anymore. 

We are only made aware of some of the risks of Mirena prior to getting it, not all of them unfortunately. 

It's sad that my sister and I both had Mirena and we both had to have a hysto because of it, and the toxicity, and the damage it did to our bodies.  Let it be a lesson to women who are thinking of getting it.  DON'T!

 

1 Posts

molzer  ·  23 Sep 2010

Hi, just came across your discussion group, prompted by newsletter email.  Luks like it turned into a cat fight.... pity about that.  People's opinions and view need to be respected in a forum like this. 

Anyhow, back to the Mirena.  I'm on my second, had first fitted about 9 years ago.  Havent looked back!  Have 3 kids, last were fraternal twins and high chance of having same again, so instead of sterilization as I was only just 30, my Doc advised the coil, in case I wanted more children in the future. 

Periods, just a sight spot, the odd monthly cramp, just to remind me I still have a womb :) and no side effects to report, luckily enough (so far!). 

I sympathise with anyone who has had Adverse Reactions to the mirena, when getting the mirena I knew the risks, but I thought it worse for 'me' personally if I ended up preganant already with 3 children under 3 years of age.  In the end, it is a personal choice what we decide to do for our own best, and if it doesnt work out, we learn by it and look at a more positive solution for our wellbeing.

Doctor support and advice is crutial in chosing what is the best solution for your problems, so if you dont get the support you expect from your GP, change and get a second opinion. 

 

12,082 Posts

Anonymous  ·  23 Sep 2010

Liz, I am sorry to hear that you are opting for such major surgery as a hysterectomy. I am surprised that they did not at least offer something like endometrial ablation first.

Such a pity the testing done for your breast cysts (which were surprisingly common in women here also, long before the mirena was avialable) wasn't more precise but hopefully you will have good news in December when they retest.

 

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Anonymous  ·  23 Sep 2010

Excellently put Barbie. Again an entirely medically accurate and completely factual post. One can disagree with opinions but you cannot dispute the requirements of the law or established scientific fact.

 

223 Posts

Canadian Liz  ·  22 Sep 2010

Another victory today, found out I was approved for government disability coverage.  Very happy!

 

223 Posts

Canadian Liz  ·  22 Sep 2010

Barbie. I'd rather speak to someone who has manners and knows how to treat others with respect and who doesn't deliberately mock the plight of another.  Your posts do give me a great laugh tho.  Wonderful for entertainment LOL.

Well the verdict is in.  A hystorectomy is on the horizon.  My gyne's office is booking it and will advise me when it will be done.  All options to control the damage Mirena has done have been exhausted.  Soon my excessive heavy bleeding with cease to exist.

Her office is also referring me to a breast specialist who will focus on my 3 breast lumps (again proven to have been caused by Mirena).  My gyne informed me today that the results of my last mammo, core breast biopsy, breast ultrasound, and breast MRI are "probably benign".  They can't tell for sure so naturally I was shocked.  Repeating all tests in December.

 

134 Posts

barbie86  ·  22 Sep 2010

Liz have you actually read the manufacturers leaflet? Because I'm not sure how you can argue that they 'fail to mention the horrible side effects that women experience with the Mirena', as in fact dozens are listed that are either proven to be, or possibly, linked to the Mirena IUS. Womb perforation is one of them; I was made aware of this by my doctor, and it clearly states it in the leaflet. It is unfortunate if women experience it, but that is a risk they choose to take; in many cases women perforation is not serious, though obviously in some it can be. The leaflet also states the risk of PID, a potentially very serious infection that can lead to infertility; with this in mind, I find it bizarre that they would choose not to mention something like Vit D deficiency.

As anon has said for a product to be licensed in the UK or Ireland it must have undergone extensive tests and MUST come with an insert listing ALL POSSIBLE side effects or risks. Maybe in Canada this isn't the case, and your sister was unaware of the risk of perforation; I cannot comment. But that is not the Mirena manufacturer's fault, but the fault of the practiomer who inserted it for not taking their patient through the risks.

How you can cite FB as a reputable source is really quite beyond me; I don't know whether I want to laugh ir cry... anyone can set up a page on FB saying anything they want; I could set up a page slating the Depo Provera injection and saying it causes lung cancer; that doesn't make it medically accurate or a reputable source of information.  I NEVER use sites like FB for accurate information; I stick to reputable medical or scientific sources.

You've had a bad experience, and I empathise, but you really need to  stop citing inaccurate and misleading information. I go through hell with my natural periods; after having the Mirena removed, because the hormone left my body straight away, I once again had periods from hell for the first time in over 6 years; I could have blamed the Mirena, but in fact it was endo, which I've likely had since the age of 11 or 12, that was causing it.

Seek the help and treatment you need but please stop making false and unsubstantiated claims. As far as I can tell you cannot provide a reputable medical source that links the Mirena to anything you've mentioned.

 

223 Posts

Canadian Liz  ·  22 Sep 2010

The mirena manufacturers fail to mention the horrible side effects many women are suffering day in and day out.  Of course they won't mention any of that in their brochure as they want women to use their product.  Of course the company is going to tell consumers how fantastic their product is because they want women to use it.  I know what Mirena has done to me.

 

223 Posts

Canadian Liz  ·  22 Sep 2010

Well back to the gyne today as the heavy, excessive bleeding caused by having had Mirena and no period for 18 months has started up again. Back on Cyklokapron to try and stop it, which it will as it's done in the last few months.  Blood work is all normal and no sigs of polyps, endo, or uterine cancer.  Going to discuss my options with my gyne but I am going to push for a hysto. This issue is interfering with both my personal and professional lives. I wish I'd listened to others tell me how Mirena destroyed their lives and not gotten it. If I'd listened I would not be in the situation I'm in now, disabled and proceeding with my disability applications. I miss not being about to go out and work like a normal person. Someday maybe I will be able to again once I get the toxicity of Mirena out of my body. It's been 7 months since I had it removed and the battle rages on.

 

223 Posts

Canadian Liz  ·  22 Sep 2010

Well we agree to disagree.

 

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Anonymous  ·  22 Sep 2010

Liz, it is a mandatory legal requirement - in other words the law on the land makes it obligatory, that the product inserts for all medicines contain and only contain medical fact which has been scientifically proven, in order for that medicine to be licensed for use in the country. Without proven medical facts provided on any medical product insert, the medicine is not and cannot be licensed to available for sale or perscription in Ireland and hence no one attending a doctor in Irleand could be provided with or perscribed it. 

While everyone is entitled to believe what they wish, what anyone believes does not change those facts nor mandatory legal requirements.  

There are a myriad of websites, companies, associations, charities, retail chains, causes, media organisations, politicians, newspapers and verious assorted others on Facebook. Does that make facebook a charity, retailer, newspapar or a politcal website? No. Of course it doesn't - any more than it makes it a medical website. 

 

223 Posts

Canadian Liz  ·  21 Sep 2010

I believe product inserts are full of lies because manufacturers want patients to use their product.  I believe the personal experiences of another hold validity meanwhile product inserts do not. 

Oh and the Irish Health site is on FB as well.  So you condone this page but you refuse to condone the personal experiences of others on FB  pages such as Ban Mirena IUD and I Hate Mirena.  Hmm interesting.

 

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Anonymous  ·  21 Sep 2010

Liz, Barbie has posted data that is directly from the product insert, which must by law, contain factual medical data backed up by scientific evidence - without which the mirena (or perscription product) would not be licensed for use or legally available here. That is not opinion.

FB may well be a reputable social networking site but what it is plainly not and has never claimed to be is medical or scientific website.

 

223 Posts

Canadian Liz  ·  21 Sep 2010

Anon, Barbie said

"The fact your deficiency developed while on the Mirena proves nothing more than a coincidence. The problem is that a lot of people take such coincidences and then make a 'definite' connection".  Tell that to millions of women who have had their lives destroyed by Mirena and a war will erupt.

And you call Barbie's comment eloquent?  I call it false and rude.  The medical problems I have been suffering since having had Mirena have been confirmed by 3 doctors to be caused by Mirena.

I will continue to condemn Mirena and spread my story.  If people have a problem with that then turn away, but respect it.

 

223 Posts

Canadian Liz  ·  20 Sep 2010

Anon, you and Barbie have not posted anything that is 100% medically accurate and completely scientifically factual.  You both continuously just post your opinions and nothing more.  You both have no medical qualifications. And FB is reputable (even Bayer who manufactures Mirena has a page on there) and what myself and other women post on there about our Mirena horror stories are our own personal experiences.  You clearly cannot respect that and it's sad really.  But your choice.

 

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Anonymous  ·  20 Sep 2010

Thank you very much Barbie for your post. I attempted to say the same thing but was slandered out of all proportion. You are more eloquent than I but nonetheless entirely 100% mediclaly accurate and completely scientifically factual - as being otherwise would be a great disservice to women. Liz, exactly do you mean by telling people they have been reported - this is not a blog site and the editor reviews all posts and edits where neccessary. Telling people that they have been reported simply because they post accurate scientific data which you disagree with is meaningless. NO-ONE is attacking or "bashing" you and I have not seen anyone call you a liar. Perforatation is a risk with the mirena (and it was advised to me, by a clinical gyne cons. that that is generally down to the skill of the gyne) and usually a scan will diagnoise it without a hysterocopy being needed - tho' it may well be required in the case of endo. Half of all perforations heal on their own without any further medical intervention - such as a repair being neccessary so I hope sister has recovered well and is being treated adeqautely for her endo. As has been pointed out to you before, Facebook is not a reputable medical or scientific website.

 

223 Posts

Canadian Liz  ·  18 Sep 2010

http://www.facebook.com/home.php?#!/pages/I-hate-Mirena/120754677961871?ref=ts

Check this out ladies.....tons of women who have horror stories to share about Mirena.  Very sad, but women need to be made aware.


 

223 Posts

Canadian Liz  ·  18 Sep 2010

Got a call from one of my good friends today, Kathy, who recently had Mirena removed due to horrible side effects it (very smiliar to mine, except she had nasty mood swings, common with it) and lo and behold according to recent blood work, her vitamin D level is 11, so she is deficient as well.  Like myself, she never had issues with deficiency prior.  For some to suggest that my situation is "coincidence" is disgusting and a major insult.  I would not have had to file for disability recently if it wasn't for Mirena and there are millions of women like myself who have had to do the same and will be doing the same (some women I even know).

 

223 Posts

Canadian Liz  ·  17 Sep 2010

And by the way my sister had a hysto at 43 years old due to Mirena having perforated her uterus.  Oh and she had endo.

 

223 Posts

Canadian Liz  ·  17 Sep 2010

And now and in the future I will report ANYONE who attacks me, downplays what Mirena has done to me, calls me a liar, or bashes me. 

 

223 Posts

Canadian Liz  ·  17 Sep 2010

You have been reported!

 

134 Posts

barbie86  ·  16 Sep 2010

I cannot find anything anywhere that suggests a link between the Mirena and a Vitamin D deficiency; I would stress that that doesn't mean that there ISN'T one, simply that no scientific source I can find links the two.

Vitamin D deficiency is extremely common, affecting 10% of the UK population during summer, and 1 in 6 during winter; from what I can gather, this figure is significantly higher in Canada, with several stats I've seen suggesting that up to 97% of the population will be vitamin D deficient at some point each year.

This is not an attack; I simply do not like scare-mongering and it is IMO dangerous to make assertions that there is no medical or scientific evidence for as it could put some people off treatments like the Mirena which could be highly beneficial for them. The Mirena is for example an excellent treatment for endo, a condition which, left unchecked, can cause severe and in some cases irreparable damage (I know women who have lost parts of their bowel to it, or who have to cathetirise as it has destroyed their urethras, etc); it is wrong to scare people off a perfectly good treatment based on conjecture and assumptions rather than proven evidence.

The fact your deficiency developed while on the Mirena proves nothing more than a coincidence. The problem is that a lot of people take such coincidences and then make a 'definite' connection; I've seen all sorts linked to the Mirena, or other methods of contraception for that matter, for the simple reason that women develop a condition, then think 'well, the only thing that has changed is I went on x, therefore x must be the cause'. This way of thinking is a leap to say the least; I could, for example, be diagnosed out of the blue with throat cancer, and think 'well, I haven't changed my diet or liefstyle, I don't smoke, but I did have a Mirena fitted prior to my diagnosis; therefore, the Mirena MUST be the cause'. At best this is misguided; at worst, frankly dangerous.

I am not downplaying your experience; I cannot say for certain that the Mirena didn't contribute, as I'm not a doctor or a scientist. I can say that I have a copy of the leaflet to hand, and it does not mention Vit D deficiency as a side effect, nor are any of it's ingredients linked to Vit D deficiency; I can say I have checked REPUTABLE, SCIENTIFIC sources on the internet and neither the Mirena nor it's components is linked to deficiency; I can say that unfortunately Vit D deficiency is very common, especially in Canada.

 

223 Posts

Canadian Liz  ·  16 Sep 2010

Magnesium level is fine according to blood work done 3 months ago.  Never heard of the Dexa thing.

 

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Anonymous  ·  16 Sep 2010

The listed side effects for Canada obviously are different. Barbie has listed the ones for here, on her post a number of weeks back and thankfully I don't know of anyone on the mirena - apart from yourself, who was affected by this. Tho' of course there are women in Northern latitudes who are affected by it, independent of their medication.Thanks for the info on the bloodwork, is a Dexa scan neccesary also? That is one of the methods of diagnosis for osteopenia / ospteoporosis (which any long terms users of the depo would have had to be careful of) Painful leg cramps can also result in magnesium deficiency, do the two go hand in hand in your case? Just interested - not any attempt to "bash" or battle :-)

 

223 Posts

Canadian Liz  ·  16 Sep 2010

Vitamin D deficiency occurs in some women who have Mirena or who have had it even if they are in contact with direct sunlight on a daily basis and are not on any other forms of medications and do not have any pre-existing medical conditions.  While there are physical signs of vitamin D (osteomalacia is vitamin D deficiency) including painful leg cramps and leg pain from the knee down to the ankle, the primary diagnosis is done via blood work and testing a woman's vitamin D level.  Prior to Mirena, I never had any issues with vitamin D deficiency and the problem surfaced while I had it.

 

12,082 Posts

Anonymous  ·  15 Sep 2010


Liz, I am very pleased for you that uterine cancer has been ruled out tho so sorry to hear of your bereavements, That is so stressful on its own without illness adding to matters. Sorry to hear of your oestalmacia, hope the treatment for it is helping. Vitamin D deficiency is not listed is being a mirena side effect here and nor is it listed for the implanon or any progesterone only pill. Tho it can of course be a side effect from other medications. Can you tell us, as it diagnosed with a DEWXA scan or can blood tests be used? I'm interested. Osteopenia / osteoporosis, however is listed as a side effect for the depo provera. Of course it is important to get adequate vitamin D complex in the diet and also to get exposure to sunlight as this is an easily assimilable form of vitamin D as you most probably know but I understand that in severe cases Vitamin D injections may be necessary for some. I understand that cramps can also be elevated due to magnesium deficiency so it may be worth your while to check that out also. Best of luck with the disability application. The social welfare system seems to be very organised so hopefully it'll all be straightforward. Just a note on the bleeding. I really cannot see ANY reason why any Dr. would not perform a hysteroscopy for sound clinical reasons. Are you legally ebtitled to written medical explanation for that? If so, it might make her think again were you request one. It could well help show the cause and so the possible solution to the bleeding. If you can, perhaps going private would be the answer.

 

223 Posts

Canadian Liz  ·  12 Sep 2010

Well my post Mirena nightmare continues. I've started bleeding heavily again so back on Cyklokapron to stop it. The D & C did nothing and it was a waste of time. Couldn't have my post surgery follow up tv ultrasound last week or my pap. Seeing the gyne on Monday and going to demand a hysto. She told me before to find another doctor if I wanted one since she'd not do one on me so if she tells me that crap again I will find another female gyne. Can get a referral from my endo. Not happy at all.

 

12 Posts

Tilda  ·  11 Sep 2010

Becs, am passing that info to my sister as she has also been through hell and back with gynae problemos.And if possible she is more "allergic" than me... the poor thing has recently discovered she can't even take the non penicillin antibiotic! I don't know what she's going to do if she gets another infection!!! She also had Mirena, in fact she recommended I try it. She's had cervical cells removed to (after Mirena) but still managed to go on and have two babies after lazer treatment in the downstairs dept!

Liz, I am now taking Vit D to see if that helps, thanks to you. The weather has gone like poo over here and the minute it gets cold, I start to ache even worse than before. I am coeliac/dairy & red meat free for the past 10 years, so I will try the Vit D and maybe it will help. I'm sure I am probably a wee bit calcium deficient but eat loads of organic greens to try and combat it. I've totally shaken up my diet (again, limited though it is) so am now totally "green & organic" but still eat white meat. I despair sometimes but am mostly trying to be of positive mind all the time and turning negatives around. Tis hard but I do feel better when I "force" myself to think positive! Sounds a bit daft when you write it but eg; it's been raining hard and heavy here (hate rain & cold) - so instead of moaning, I bought a totally cool brolly, black with pink frills on it!!! Also, don't have to take the hose to the garden when it rains!!! Turning it around, all the time in the hope that it helps!

I love being a woman but damn, it hurts so bad sometimes. Am so glad you are in Canada Liz and will get the help you need; you'd be in a right mess if you were here in Ireland. Unless you've a limb hanging off, with blood and guts in tow, they'd say you were faking here! I am lucky enough to be able to work part time and earn enough to pay the bills; I've the "not working time" to psych myself up for the working time... swings & roundabouts but never forget, we women are made of strong stuff and we will persevere!

 
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