Refusing the mirena

[hayls]

Hi

I was just wondering if anyone has refused to have the mirena and if so what your consultant said and your reasons etc?

Thanks

[Hidden]

Hi

I refused to have the Mirena a couple of times, but then I said OK I'll try it. I personally didn't like the thought of it inside me. They fitted it whilst I was having my lap. Within 3 weeks I was in so much pain, I went to emergency dept and they removed it which I must say was so painful I ended up in bed the rest of the day taking tramadol like they were sweets!!! I had read so many bad stories about it but thought maybe I will be ok?

Remember there are some good stories, but people only tend to write the bad stuff and not comment about the good stuff. I am glad I tried it, because now I know nothing will work on me!!!

Whatever you decide it's your decision xx

[hayls in reply to Hidden]

Thanks - you make a good point of people only commenting on the bad rather than the good!

For me part of it is really not liking the idea of it generally but also I may be intolerant to progesterone but as the drs can't be 100% sure on that (i was on a cocktail of stuff at the time!) and my options are really limited due to another condition (can't have oestrogen) I'm feeling slightly pushed on it

[BellaBG]

I refused the mirena coil each time it was offered because I'm intolerant of hormonal treatments. I was assured that it was only a local release of hormones and that it shouldn't affect me like the pill has but I didn't want to risk it. I was quite firm about my decision and they didn't keep pushing me. I've read lots of other women's experiences with the coil, both good and bad so I tried to make the right decision for me.

Stick to your guns if you really don't think it's for you but do push to research other options. Good luck!

[Efarms37]

I think the mirena is a simple thing that can easily be put in or removed. From my own experiences with the coil I had two both for 8 months and neither helped with the pain but I also know lots of ladies it has worked fantastically. Can I ask why you considering not trying it?

[hayls in reply to Efarms37]

The biggest thing for me is not knowing for sure whether or not I will react to the progesterone or not. I have a neuro condition brought on from a reaction to the pill which I have spent years in/out of hospital for. After a few years my neuro cons said progesterone was fine so tried the implant and ended up back in hospital and off work for months but as they changed my neuro treatment at the same time as removing the implant no one knows for sure if it was that that brought it on or not so the cons seem happy to try the mirena but I'm really not sure and really don't want to end up back on a neuro ward anytime soon - I'm fed up with hospitals!

[Efarms37 in reply to hayls]

I also had problems with the pill and then found the progrsterone in the mirena effected me even though my doctor said thats not possible. That is also why I tried two of them just to be sure it was the coil causing weight gain etc. the ladies I know that have the coil have all gained weight although for most that is the only side effect. Nobody knows how they will react unless they try something and I tried twice as I was really hoping it was the answer. I can really see why you are stressing have you tried natural progesterone cream? That worked brilliantly for me for a couple of years with no side effects.

[worth71]

when they offered it to me, they more or less said 'this is the only treatment we are offering at the moment' i felt kind of pressured as they suggested it whilst i was having my hysteroscopy and biopsy done, they said i would have to done at the hosp instead of gp's as my womb or cervix is in the wrong position so it needs to be done by consultant, the thought of having to go in for another appointment just to have that fitted, so i thought whilst i was there legs in the air i'll go for it.

they said a day or two of cramping, first period will still be heavy but after a month or two bleeding will almost stop and so will the pain........i'm still waiting lol, although in fairness the bleeding is not so heavy, before the mirena i was changing tampons sometimes every 20 mins, even the super plus extra, whereas now i can go a few hours, so on that side of things it has helped me, but my periods are so erattic, it seems (as i keep a diary) i have 2 periods in every 5 wks, those periods last 10-14 days, so it seems quite often, probably more than before - it has not helped with the pain at all, and when i'm not on my period i am either spotting or have pinkish/redish mucous type stuff everyday, i cannot remember what it is like not to wear a sanitary towel, it costs a fortune.

i have heard good stories though, for some women it has done wonders, but they generally do not have our symptoms, so i really don't think it helps with endo from i have found xxxx

[worth71 in reply to worth71]

i forgot to put - that they make you feel that if you refuse their suggested next treatment, that you cant be that bad or you'd try anything, thats how i felt anyway xx

[littlestar]

I was told that was it .I wasn,t being offered anything else.I had it fitted it took less than a year to fail,I am now on injections hopefully before a hysterectomy,I wonder wether it either works or dramaticly fails so either way they know.

[Tibby3a]

Hi

On the 7 July I am having two dermoid cysts removed and the mirena coil put in. Everything I have read has scared me. I've been having pains since 10 years old and now I am 46, the place I work has the policy 'No work, no pay', so now I am worried about having to have time off after my op, I am having the 10 days holiday after the op, but thats all I have left till January 2013. I live alone in London and have no sicial network of people as everyone I am close to are in Manchester where I am from.

I know I have to havve the cysts removed as they are at 'rupture stage' and I've got 'chronic endo' plus other disabilities and illnesses. I rely on two crutches to walk and after the op I will need a wheelchair to get to work, I am worried about this as my two busses to work are through the Olympic areas of Stratford and Docklands. Everything is now worrying me and I am very scared and some what alone.

[hayls in reply to Tibby3a]

Its completely understable, but try not to feel alone, there are lots of lovely ladies here that are in the same or similar position and can help and be supportive. It sucks that your employer isn't very helpful, you should be entitled to SSP, not that it's that much, but try not to feel pressurised into going back to work before your are ready. Will you have someone with you after your lap? if you have any questions re SSP or DDA, pm me as I might be able to help x

[Tibby3a]

HI Hayls

SSP wont even cover my utilities never mind my rent and I've looked into benefits in the short term and none on offer. So I've got two weeks and I've no choice but to go back to work.

[crystal_willow]

I kept being asked if I wanted to coil and I kept saying no, I remember this one person before surgery wrote on the paper "mirena +-?" and I thought.. I am not stupid!! I know what that means and I am not "undecided" I am definately decided that I am not having it!!!

what I in fact said was "can you cross that 'mirena+-?" off because I don't want any confusion in the paperwork before I go in for surgery I definately don't want a coil fitted and that is my decision. I have been asked by two GP's and the first consultant I saw here, each time I said no. I understand the decision I am making and I don't want to be asked about it any more at this stage"

it was so frustrating!

My reasons are this:

My mother has endo and her coil pinged forward ad became embedded in her uterus wall after having children... if anyone has the same womb shape as my mother then its me and I would rather deal with the pain than have a coil embedded in my uterus.

I want to see how my body adjusts after surgery without further interference

I don't like the idea of a foreign thing being in my body that doesn't completely need to be there

now i have had the surgery I know that I am at stage 1 and therefor have minimal scarring etc so I may be fine for a long time without it.... once I have had children I may consider it but not before unless my condition significantly worsens.

I hope that you are able to come to the right decision for you and that your health care providers respect your decision.

[LittleMissManx Moderator]

Like many ladies here learned the hard way my body couldnt tolerate heavy doses of hormone treatment. But I was also running out of other options to consider and so went to a WellWoman Clinic to get more information. <The hospital docs seem to think all their patients know what the side effects are> The GP on clinic duty that evening offered to do it there and then which I was glad about as it meant I didnt have time to worry about the fitting of it.

I walked home from the appointmnent in absolute agony and was literally rolling around on the sofa in pain. It did settle a little but I had to miss the 6 week check up with a migraine. Most noticeably my mood became very low and I had no interest in anything which was unlike me.

My love/hate story with the mirena came to an end after being sent to hospital as an emergency by my GP due to a migraine epsiode whcih left me unable to feel my feet. After 2 days in hospital whilst I recovered I asked for the mirena to be removed at my gynae appointment a few days later. Not surprisingly I had no argument from my consultant and out it came. But at least I had tried it despite my reservations.

I then moved on to my final option of Prostap which I was dreading but which proved the best treatment for my symptoms. I did have to fight to have the injections monthly not 3 monthly but nothing is ever easy with endo.

Good luck whatever you decide!

[Aquitaine]

I have recently started with Mirena, and am finding it much easier than taking progesterone pills (which gave me awful migraine etc). It's been a bit uncomfortable right at the beginning, but now I wouldn't know it's there, and the hormone dosage is lower than the pills I was taking, so I haven't had any adverse effects.

Having said that, I am 48, and my progesterone levels are naturally falling a bit (happens during the peri-menopause), so I'm not sure if this would have been more difficult earlier in life.

As others have said, it is absolutely your choice, and if you don't feel comfortable about it, then fine to turn it down - don't be afraid to stand up to your doctor! People's experience varies a lot - there are quite a few horror-stories on this site about Mirena, but for me it's been positive so far.

Good luck!

[NinaR]

I had a Mirena coil in for 4 years and I was symptom free for those 4 years which was amazing however I also felt out of touch with my body. I do not accept that he hormones are only local. if that is the case, why is it that many gynaes give progesterone creams the you rub onto your upper arm to help hormonal conditions?? drugs access all of our cells so if a woman is mega sensitive then she should be careful using a coil solution.