Mirena coil - my experience & questions...

[tinker1234]

Hi everyone

After a bit of a battle and two failed attempts by my GP, I finally had the mirena coil fitted just under 3 weeks ago by a Dr at the family planning clinic. Firstly, I would like to let you know that the actual fitting wasn’t too bad, I was absolutely dreading it after reading accounts of how painful it could be. My GP tried twice but was unable to do it and even muttered that she didn’t think the family planning clinic would be able to do it. So when I went there I was expecting the worst. Thankfully she was an expert and popped it in without too much trouble. I won’t lie, it was a bit painful and uncomfortable and left me feeling woozy and wobbly afterwards, but it wasn’t half as bad as I was expecting.

As I said, it’s now been in for just under 3 weeks. I had it fitted about 4 days before my period was due and the Dr did a scan at the fitting and found that I had a 4cm simple cyst on one of my ovaries. That first period wasn’t much fun to say the least, I felt pretty awful, was aching and had a bit of pain and my moods and emotions were all over the place. It settled down a bit after my period proper seemed to end, but I have carried on bleeding since then (although only lightly spotting now). I have however, had bad back pain recently and various other twinges and pains and my mood has plummeted again. I am feeling really tired and miserable and am totally fed up with the whole thing really.

Has anyone else experienced this? Can anyone advise if these feelings will ease? Does anyone know if the simple cyst is likely to disappear of its own accord as well? I know the mirena can cause more cysts so wondering whether I need to keep an eye on this. It just all seems never ending!!

[worth71]

i had a mirena fitted nearly two years ago, whilst i was having a hysteroscopy, and no it didnt hurt much at all, i had it removed two months ago. mine took a long time to settle, a good 12 months, the first 6 weeks or so were awful, and i was in a lot of pain, the heavy bleeding took around 6 months to go, but i bled pretty much everyday but lightly, so although it was a nuisance it was easy to deal with compared to the heavy periods i used to have. it helped my moods for sure, as before it i could be raging one minute and in tears the next, the mirena really helped my moods level. but it did not help my endo pain at all, and in the last few months of it being in my periods were gradually getting heavier and heavier, and i had some hair thinning (my main reason i wanted it out) so i had the mirena taken out at my lap a couple of months ago, i was sterilised and had a endometrial ablation, i was also finally diagnosed with severe endo, am on waiting list for full hysterectomy, but am hoping the ablation will help in the meantime. i also had many cysts that came and went, and a choc cyst too, i dont think the mirena helps with cysts anyway, but you'll probably find it will go, cysts are quite normal until the get too big and cause pain, they will keep an eye on it.

make sure you give the mirena plenty of time to settle though xx

[purpleburple]

The mirena didn't suit me sadly. I really was hoping it would work as I was sold it by a nurse after having a smear test. I decided to have one in as my periods were really heavy but only managed to keep it in for six months. I had spotting pretty much every day which was really annoying. It certainly was a good contraceptive lol, Also had breast pain, bloating, brain fog, felt really low in mood and had cramping.

Was so pleased to have it removed. However there are a lot of people for whom it suits very well so I would say it's worth a try.

[Raikka]

Hi there,

I had the coil fitted almost a year ago after the doctor who performed surgery (for endometriosis) on me recommended it was a good idea, a great way to treat it as it stops your period so cysts won't form etc. Well it took me a while as I was really scared having it fitted after hearing so many horror stories and that's what it was me, very unpleasant experience but I thought it must work/it will work. And now after almost a year my periods are still present, I get bleeding every month and random spotting and I'm very frustrated. It hasn't worked and I am thinking of having it removed. Few weeks ago I went for a scan as I had been to my GP to complain about pain and I knew the endometriosis is back, and it is. Scan revealed 4 cysts,not sure where they are, last time there was few small ones and a big one and two operations, and now I'm waiting what the next move is. I get horrible pains, normal painkillers won't help, I also use hot water bottle to ease some of the pain. I haven't heard the coil creates new cysts...really??? I had endometriosis cysts removed by laparoscopy and then open surgery, in 2010 and 2011 and about a year later I felt it's back. I went to see my GP saying I am concerned about this and that but she said we'll wait and see if the coil starts working. I know my own body and I am very concerned what happens next, if the other ovary can be saved, as i only have one left and if cyst has wrapped itself around it.... I understand your frustration, I have been there, I am there now. I am thinking of going private... my endo keeps coming back, I don't know what to do either. I feel very tired too, I know fatigue is part of endo but I have other health problems too. I don't know if the coil is causing you to have all those feelings...I think i still feel the same as always! Hope this helps a little!

[tinker1234]

Thanks very much for your responses ladies, it certainly helps to get a few different views on it all and it is interesting to hear how these things affect us all differently.

I know it’s early days yet so I need to persevere and give the mirena time to settle but I feel like I’ve taken a huge step backwards in terms of how I am feeling. I’m in more pain now than I was before my lap (I had a lap last year to remove some endo cysts, one v large and wrapped around my entire ovary, and other bits elsewhere - the ovary was saved though thankfully) and I feel like I am battling through the days again. I have had problems with hormonal treatments in the past (mood swings, depression) so I was hoping this might be better for me as it has a lower level of hormones in it. I guess time will tell and I need to just stick with it for a bit.

I’m changing my GP surgery as I am not that happy with how it’s all been handled up to now. I’m also going to ask to have another follow-up scan as this isn’t something that’s been offered to me… I’ve learnt through this whole process that you really do need to ask and fight for what you want, as it’s not usually just given to you! Am a bit sick of fighting though as I expect you all are too.

Raikka - i've thought about going private too, I may still end up going down that route if I find things don't settle and I am getting nowhere with the NHS. It's so frustrating when you just don't feel like you know which way to turn.

Also, yes, ovarian cysts are listed as a common side effect of the Mirena...not sure how or why though?!!

Thanks again for your responses, it really helps to get some feedback. I hope that you all can find a way to manage this as best as you are able and are hopefully having some good days in there too x

[AmyLee]

I had Mirena fitted as mistakenly thought it would stem development of endo. It doesn't. I have that on good authority from my specialist. I suffer chronic fatigue, probably as a result of the hormonal imbalances endo causes, so Mirena was a nightmare for me. Felt so low, head fog progressed to headache. I lasted 5 weeks and felt instantly better a few hours after it came out.

That's just me. Like most meds you just don't know how it affects you til you try.

[jvg69 in reply to AmyLee]

I had mine 2.5 months feel so tired, so bad lately I have started to feel really isolated and very down,never have any energy. Everything is a huge effort. How long did you have yours?

Ps. Better late than never hey!😃

[AmyLee]

Ha ha only 2 years late on input lol x