Mirena coil

[jamtoast12]

Hi

I have recently had the mirena coil fitted and now wander if I've made a huge mistake!!!!!!

I have always been on the pill and had no problems at all, regular cycles, bleeding etc but I am lazy taking it (forget regularly) so thought it get the coil as I'm 36 and not planning any more children.

However I have read lots of horror stories about it so seriously wish I'd not got it. In particular, I have a family history of thinning hair and mine is already very thin and I have recently read not only all the horror stories about hair loss but also that the mirena is bad for people like me who may have androgenic hair loss.

None of this was mentioned at the families planning who basically didnt offer any advice at all or give even general information.

It's only been about 10 days but I don't want it anymore!!, I'm worried about getting it out and what they may say. I asked for it but genuinely wasn't aware of all the issues with it so scared to ask them to take it out as I know its expensive etc?

Any advice please! Thanks

I'm 49 and peri-menopausal. I went to my GP after horrendous year of heavy periods and flooding in public. Scan revealed a fibroid. Gynaecologist fitted coil and did a biopsy which came back clear. I was told to expect a few days of pain and discomfort as womb might "be in a huff" after the procedure. I had no side effects at all. Since getting it fitted periods have completely stopped which is wonderful and mood swings have also reduced significantly. Best thing I ever did has significantly improved my quality of life. Not impacted on my sex drive your problems could be unrelated would strongly recommend going back to GP or consultant if you have concerns about any possible side effects as every ones body is different.

Hi all.. I'm 35 and for the last 9 months I have suffered from extremely heavy bleeding, flooding, severe cramps etc. The bleeding has been almost continuous for the last 9 months, despite being on the pill. I have seen a gynea who has diagnosed uterine fibroids. He has recommended the merina coil.. I was just wondering if anyone else has been in a similar situation? I got a leaflet, which said that irregular bleeding may occur.. TBH i am sick to the back teeth of bleeding & not sure whether this is just going to make things worse/prolong them. I've heard so many scary stories about coils involving pain & bleeding. So would be good to get views of someone who's actually used it!! :)

I had a Mirena coil fitted because of very heavy bleeding. Was given the choice of Endometrial ablation or hysterectomy if it didn't work for me.

My bleeding had been so heavy that I became severely anemic and had to be given three units of blood in hospital.

Can't say that the coil is perfect as I do still get a bit of a discharge.
But, my periods have gone away and that is such a relief.

I would like to add here what I posted on another mirena thread, it's that for heavy bleeding I have tried successfully 2 things:

1/ acupuncture (the Chinese type)

next period after session was the worst I ever had since teenage years but after that had totally normal periods, no flooding, no clots no unbearable pain for 18 months.

2/ herbs

I took 10 drops of ladies mantle tincture (latin name alchemilla vulgaris, but was told the glabra or mantilla variety suits better) every morning first thing.
it worked like a dream, didn't realise had periods!
I took it continuously for 3 months but actually better take it for 20 days only and see if it straightens up things OR take it only during the second half of the cycle days 15 to 25.
not to be taken in conjunction with hormones

it's worth trying before any drastic decisions.
was offered hormone ring but declined, can't stand even tampons.

Also for those who do decide to have the mirena fitted or for just hysteroscopy a simple tip: hot water douching.
Do it as often as poss for the 2 days previous to the procedure to soften up the cervix, as hot as u can stand without scalding yourself!
It really makes a difference.

And for period pain try and get ur doctor to prescribe mefenamic acid, and start taking it one day before ur period is due, one capsule with every meal (=3)
It's more effective that way and you don't need to take so many overall, so healthier for the body!

I was diagnosed 9 months ago with Complex Hyperplasia of the Uterus (thickening of the uterine wall), this is one stage from uterine cancer (complex hyperplasia with atypia). The reason I write this post is to let women know that the standard treatment is to fit the mirena coil in order to allow progesterone to be released in the uterus directly in order to thin back the lining and prevent the abnormal growth of cells.
I was told quite bluntly by my gynae that I had this condition because I had a) not had children b) was extremely fat!!!
I was fitted with the coil and sent away but bled consistently for 8 weeks! Finally after ending up in tears of frustration at my GP, I was referred back to the gynae consultant who put me on Northisterone which is a dose of oral progesterone. The bleeding stopped immediately but the side effects of the coil and the northisterone were awful: anxiety, hair loss, facial hair growth, constipation, bloating, fluid retention, stomach pains, back ache, depression, - you name it I went through it!!! In addition to that I also went through 4 uterine biopsies until I was finally given the all clear in January.
My relief was immense as they had been talking hysterectomy and removal of lymph nodes. So I asked if I could come off the northisterone to reduce the side effects which the consultant seemed happy with - bad move!!! I started bleeding so heavily and having stabbing pains - so bad that I went to A&e who just checked the strings and sent me home!!! I went back to my GP begging for a referral back to my gynae consultant and was told bluntly that he couldn't tell the consultant to see me urgently and it could be weeks before I got an appointment!!!
Bearing in mind I could hardly stand from the pain and felt like a poker was stabbing my insides I left the surgery in tears - AGAIN!!! I decided to go privately as I knew I needed help and saw a brilliant consultant the next day who whisked me straight in for an ultrasound which showed the coil was sat in the cervical canna land was in effect being expelled and the pains were actually contractions!!! He removed the coil and put a new one in and put me back on the northisterone as he said it is critical in the first 6 months not to bleed heavily as it can dislodge the coil.
I still have cramping 5 weeks on but he has said to bear with it a bit longer before going for an ultrasound.

I have since lost 4 stones in weight ( it can be done with the coil in) but you do suffer from fluid retention with the coil so bizarrely you need to drink MORE water than average. I drink 2.5 to 3 litres per day - it's not easy but it works. Also eat foods to alleviate fluid retention.

Having the coil fitted has prevented me from developing uterine cancer and having to go through a hysterectomy at the age of 41.
Would I choose to have a coil fitted? In normal circumstances NO but it has saved my life potentially so I am willing to be more tolerant of cramping etc.

I just wanted to post my story in case it helps anyone else going through a similar experience, my condition was only picked up because I mentioned to my GP that I was spotting abnormally between periods.

If you are bleeding for weeks after the coil has been fitted your GP can give you something to alleviate the bleeding. DO NOT be fobbed off by ignorant GPs who know Nothing about gynae problems - I have encountered some shocking attitudes from my surgery but it is important that you get the right help! Bleeding for 8 weeks like I did was totally unnecessary and could have been stopped by just giving me a tablet of northisterone for a short period of time until the coil settled in. It is standard practice by consultants!

i feel sorry for all your suffering, and i hope that you'll be alright from now on.
Did your consultant mention progesterone pessaries like utrogestan?

i feel somewhat concerned by your story because i too have dysplasia-- the ultrasound assistant told me she'd never seen a case like mine- but when i saw a (junior) gynae she never so much as said the C word so wtf?/

6 months previously had hormone bld test done and the results were wayy too much oestro and next to none progesterone- and it's not the first time either it's been going on for years...

i did ask the gp wether it was a cancer risk and she conceded (very reluctantly) that it was but categorically refused to give me any preventative treatment (progesterone) or even to refer me to a specialist clinic!!!
her comment: "yes it is a cancer risk but (shrugging) lots of people live with a cancer risk..."
unreal but true!

And 6 months later there i am in hospital going through - going from what you tell us - a proper cancer SCARE!

did you officially make a complaint?

My Mirena was put in wrong and was causing a lot of pain - 4 different doctors refused to remove it and told me to "give it time to work" and when it was removed the nice doctor said "wow, no wonder it was painful, it wasn't lying in the correct place".

Wow elseastars this is just horrible!

Can i ask you did you put in a complaint about this because really talk about incompetence-- first during insertion and then by dismissing your pain1
they could at least have given you a scan!

you have not been lucky- or is there a lot of incompetence/indifference around?

I did not file a complaint as I may need their assistance in the future but several of the GPs at the practice admitted they had no real gynae knowledge and one even said "it's 15 years since I did my gynae rotation - I don't know what you expect me to do" this is really shocking but please LEARN from it as I did - GPs are not up to speed with gynae stuff so please go see a consultant who specialises in the area!!! And if you are concerned about anything keep nagging until you get a scan!!! Don't be put off by the old chestnut "well the strings are in place so it's fine" RUBBISH!! My strings were in place while my uterus was expelling the coil and I was bleeding heavily - only you know whether it feels wrong or not. I kept nagging until I got my scan which showed the coil was displaced!! Also - the dr who did the scan was brilliant and told me that the only way to properly asses where the coil is is to do an internal ultrasound, apparently the external one (via your tummy) doesn't really show much and some ultrasound technicians are not trained to locate a mirena coil as it's plastic so make sure u ask the ultrasound technician if he is trained to find the coil.
I am going back to my consultant as I'm still having pelvic pain and want more information on the coil and other options.
My friend is thinking of having the coil inserted but has been deterred having seen my experiences but some women have no problems at all with it so I think it's very much an individual response, after all it is something foreign in your body!

you know it is really difficult to see a consultant for what they consider run of the mill women's stuff, and when you go to the gp again and again they just label you neurotic and this makes things worse- i understand the pattern and i did refuse to be dealt with only by the nurse- she was very huffy about passing me on to a consultant- my experience is that nurses can be way wrong with their diagnosis so...

but i bet stuff gets written in my notes.

did you ever request a copy of your gp notes?
You might be surprised at how you are described!

the solution ,idk, if enough women put in official complaints maybe we won't be ignored so much as individuals, maybe forming facabook support group and pressure groups.

it's not our role to be aware of xyz and do our own diagnosis it's a doctor's job and why can't they do the basics of their job.
All taxpayers pay them in advance and for what "service"?

even the "consultant" i saw was a junior gynae who to me behaved like a rookie trainee.

well she doesn't reflect on the case she just repeats what she's told to say like a parrot.

I went to my GP around 20 times in the first 8 weeks - sometimes 3 times in one week!! To be fair they didn't make me feel neurotic at all but they just didn't have the specialist knowledge of the gynae consultant.
They did refer me on the NHS but it takes weeks to get an appointment and when a coil is being expelled you really need immediate help as it's painful to say the least - like going through childbirth as the uterus contracts to expell the coil!!!!

It really is luck of the draw as to whether you get someone good as a consultant but don't forget you can seek a second opinion or change consultants! I even changed cities so there was no "closing ranks" within the gynae consultants. As no consultant will ever critisise another!

I also had a specific condition so went on the internet and found a consultant who specialised in that area - he is brilliant and has instilled far more confidence in me.

I did end up going privately in the end as it was the only way to get a quick appointment.

My strings have disappeared!! Apparently they have gone into the uterus as the coil shifted... The consultant said it's ok so long as the coil is in the right place generally and there is no perforation of the uterus. I'm sticking with it for 6 months as he feels the pains will subside as the coil "beds in" .
I have to go on his advice but will be having a biopsy in 3 months so he will review it then.

Going back to your point about GPs - yes they can be dismissive but one trip to A&E and they take it seriously, or you could try crying that worked for me! I even confronted one of them and said that I felt I was being perceived as a hypochondriac and my GP was horrified that I should feel that way! Sometimes I think we punish ourselves for going to our GPs - especially when the problem isn't outwardly obvious, also the coil is hormones!!! I found that initially Progesterone can make you feel a bit more anxious BUT if you feel there is something wrong then you can go to A&e or change your GP surgery.

The condition I have is classed as benign but left without progesterone treatment could develop into cancer.

As I have said before, the coil works fine for most women but I believe that for the 1% that it doesn't work for that's no consolation.

If you have just had it put in and are bleeding heavily ask for northisterone which stops bleeding. If you are in pain go back to your specialist.
You can still bleed for the first 6 months apparently but the more you bleed the more likely the coil will expel so I would ask for northisterone or something to stop the bleeding if you are still in your initial few months.

I had a period but it only lasted a day and was very light - the consultant was pleased as that is why he put me on the northisterone to minimise the bleeding and chance of it being expelled again.

I can't profess to be an expert in this matter but am going only on my experiences so far.
I hope this is helpful to someone!

i'm glad you finally found someone you can trust.
i was just about to post that, to go to A&E, last resort option to be sorted.shouldn't come to this but there you go.
i am not going to have a coil- was suggested but no way.
several years ago after polyp op was offered vaginal ring (experimental) or mirena coil but declined.

however, lived in fear the fibroids would grow and polyp recur.

i have tried as i said to control bleeding with plants and acupuncture.

i really recommend acupuncture, it worked once for me (only one sesion0 and it worked for my friend (12 sessions)

I have seen a consultant and she sort of re- suggested (did not push it) the mirena -it seems that's what they do in this clinic- but i know from years back the Mirena makers has paid them big money for their clinical trial which they used for their general surgery costs- so how unbiased is that advice...

i objected i can't have the M- coil anyway because of a blood clotting disorder.She said it's not a contra indication as the hormonal effect is localised.

I know FOR SURE it is a contraindication because a meta analysis of data has shown that even artificial progesterone through the skin increases blood clots- maybe not by much but it does.

it's hard to make decisions in this jungle and i always tend to prefer non drug alternatives.

try to relax if possible about the hyperplasia, a lot of it is about the amount of hormones and stress is the worst kind.so try to focus on the pleasant sides of your life as much you can!

If you have lost the weight and keep up the exercise are you not mostly out of the woods?

Do you drink the decaffeinated coffee mentioned in the article?

i agree the more women detail their experiences on the net good or bad the better.

i wish someone on here who is good at spreadsheets would find time to do a kind of survey of all the mirena stories on mumsnet.

you know, how many had non stop bleeding, the percentage who expelled, how many loved it-

another of my friends has had one for years and she thinks it's a godsend.

Hi, I had my merina coil fitted in February. The fitting didn't hurt at all, no more unpleasant than a smear test, I felt a couple of sharp nips and that was it, done!
I didn't have any cramping or pain afterwards, just some light spotting. I have experienced what I call 'sliming' (Sorry, haha) and I'm due on my next period any day now.
I had the coil fitted due to heavy periods, bad period pain and migraine. I have had two, light, pain free periods since the fitting, which has been fab, no painkillers or hot water bottle needed, and no feeling like my insides are going to drop out when I stand up!! :)
I am 39, and if everything continues like this, I am happy to stick with it. The only drawback is the 'sliming' (a dark coloured, brownish discharge) which I presume is the thinning lining of my womb. This, however, is far preferable to the horrendous clots I was passing before I had the coil fitted. Blergh!

Hope this is helpful in some way.

I had my MC removed today and wanted to know if anybody else is the same?
I had it put in 6 months ago for heavy periods. Since then I have developed severe anxiety ( I am on antidepressants, beta blocker and sleeping tablets and receiving therapy)! I've never been like this before!
My eyes are out of focus - not blurry but as if I'm about to get a migraine constantly and I have vertigo symptoms. I have had blood tests and been back to dr but everything normal. I happened to google mirena coil symptoms and up came all my symptoms! I've felt like I've been going mad. I'm hoping these symptoms will now go! Has anybody else experienced these and if so how long until I'm feeling better? Like many others I read the info leaflet after insertion!

i had the mirena coil for the past 5 years. It was great that i had no periods or regular pmt problems BUT i had developed severe back, leg, joint pains gradually getting worse for the past 3 years. Went down the back pain so called treatment with GP and orthopaedics but have gotton no where. After reading blogs on side effects it seems to confirm my suspicion that the mirena coil may be causing this as lots of women are suffering with similar symptoms. All bloods are normal including autoimmune tests. I feel like a lot of women, that i am 30 years older. It is debilitating and depression has set in. There is no clear proof that there is a connection but have they researched the areas of concern for all of us living this dread? I used to be so outgoing, active but my life is now a shadow of how it used to be. I had the mirena removed 8 days ago hoping that the removal of the daily 20 mcg of progeseterone will make a difference plus the removal of the irritant to the uterus. I have had light bleeding and some pmt symptoms but no major change yet. In the recent past I have had,3 epidurals, morphine, etc does not rid the constant pain including daily naproxin etc. Soooo please if anyone has ANY suggestions or comments i would be delighted as I NEED to get my life back. Meanwhile i will update any progress/worsening.

To Square1 : lots of women on these post have had severe mood swings/anxiety which they associate with the mirena. It seems our fluctuating hormones can all cause these. I hope once your hormone levels stabilize now that you have it removed, things should improve and no dont think youre going mad. Give yourself a bit of time and let us all know. Of course taking other medications can set off a whole new set of symptoms so good luck in getting yourself back to normal hopefully you can come off those too soon and best of luck. See curezone site posts.

Thankyou thankyou for that! It makes me feel better knowing there may be a link!! I will update if any changes!!

I had a terrible time with the Mirena coil, which caused severe depression. No one knows your body like you do. If it isn't right for you, then ask for it to be removed! We are all different, and Mirena isn't the answer for everyone.

diane

To Diane thanks for that- how long after removal did you start to feel better? I'm hoping you're fully recovered?

Hi Ladys this is the second time I've had the marina coil fitted and can't wait to get it toke out had enough.
mood swings are very very bad don't feel myself i lost a lot of weight before i had the coil BUT now struggling to keep it off put n nealy 10 pounds always looking for something sweet to eat if i don't get it i become moody always look bloated can't do up my trousers button some days and feel totally lost in myself always on edge got a appointment monday fingers cross nurse will remove it plz plz give me my body back .

This was seriously not the thread to read today. I'm having mine fitted this afternoon. Am already on anti-ds and not looking forward to cramps, pain on insertion, strings like fishing wire, random bleeding, mood swings, bad skin. Crap, why did I agree to this??

Firstly I would say my friend is on her 2nd Mirena and she has had no bleeding or problems.

My gp recommended it as my period had become more frequent and heavier, an age thing, lol!

I cannot say whether it has worked, I will give it another 2 months, I am currently on week 9 and my period started 7 days after it was fitted, unfortunately it has not stopped. It has varied from light to heavy but never light enough for a panty liner :-( my mantra is 'maybe tomorrow'

I am fed up, who wouldn't be? I was told that I may experience more bleeding, I had no idea that could mean constant bleeding. When I was on the Depo injection my period stopped completely, I stopped it 2 years ago. I really assumed this would have a similar effect.

I went to see my gp again recently who told me my womb lining was thinning and it would stop, so give it another 2 months. I just keep thinking this can't be good for me and I have had a few days of feeling under par. Then it was suggested that I go on the pill along with the Mirena which I declined. I do have a supply of Norethisterone so I can have a break from it on my holiday. I did feel rushed at the appointment, I wanted to ask questions but I was given no opportunity. The local NHS trust closed the well woman drop in clinic, as often is the case :-(

As suggested by another poster it would be great to know the figures on how many people had a positive effect, how many expelled it etc.

Hi I have had mine for 3 years after too having heavy periods, I feel it was the best choice for me, it took about 18 months for my periods to stop but I was only getting 1 light one a month instead of 2 a month !! But just started with hurting breasts been like this for about 4 days?? Was wondering if anyone else had?

Really interesting finding your posts on here re Marina, I had it fitted about a year ago. I thought all was going well, however experienced progressive hair loss, because it was gradual didn't pay too much attention to it. I have always had very thick hair and now it is very thin in areas especially round the sides, also felt very tired but put this down to my workload increasing. I'm going to ask for this to be removed before I lose all my hair. Reassuring I'm not on my own.