Mirena Coil trouble!: Hi everyone! I had a... - Endometriosis UK

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Mirena Coil trouble!

butterfly95 profile image
8 Replies

Hi everyone! I had a Mirena Coil fitted on the 16th May 2013, had to be done under a general anaesthetic as was so painful, I had it fitted to help with endo and polycystic ovaries. The first couple of days were great! I even wondered why I hadn't done it before! but then the aneasthetic wore off.. and every single day since then I have been in excruciating pain! It is absolute agony, there has been a few times I have considered going to A+E! I have been back to my doctors and she has put me on codiene and paracetamol, these merely take the edge off the pain! I have also been suffering with severe constipation (have been taking perscription laxatives but these have done nothing!) also pain in my hips, lower back, shooting pains in my right leg, agonising stomach cramps and what feels like a tremendous amount of pressure in my bottom, the pain is so bad it makes me feel, and occasionally actually be sick! despite pleading with my doctor to take it out she seems adamant to leave it for at least 3 months! I am so desperate I have considered pulling it out myself!

Has anyone else had problems with the mirena coil similar to these? I would like to know that I'm not going mad lol! I would be greatful for any advice!

Thank you

Beth

:) x

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8 Replies
little_fins profile image
little_fins

Hi Beth

Your message brought back so many memories for me. I don't know if what I am going to say will help you but it may offer some comfort.

I too had a mirena fitted under general last August when I had my explorative lap to confirm the gynaes suspicion of endo. We agreed beforehand to fit the mirena if endo present. For a few weeks after surgery I did have tummy cramps, my first period was horrendous BUT I persevered as told to do so. By the beginning of October things did start to feel better with the 'general' endo pains but I started to experienced a lot of localised issues.

I had horrible browny discharge and had to wear a panty liner all the time. Docs kept testing for BV or thrush or anything else but always clear. I also kept complaining of an irritated sharp pain in my vagina, I always said its like the strings of the coil are digging into my side. This also caused pain down my legs etc and burning in my vagina. Oh my goodness this was horrible!

Eventually my gynae decided to do a hysteroscopy (november) to check coil was in he correct place as I kept complaining. On the day he was shocked at the amount of discharge I had and how red and inflamed and sore I was. As he tried to put the ickle camera through my cervix into my womb the pain was so so bad I scammed at him to remove it and the nurse basically ordered him to. He decided the and then to remove the coil (didnt feel him even do it) as he said I shouldn't be in that much pain.

Right, now the verdict. I have a lump of endo that has stuck my bowels I my cervix and also grown through my vagina and the lumps could be seen when they looked up me. Gynae reckons it was the coil irritating this pocket of endo hence the pain and burning or I reacted to the metal. Either way my body rejected the coil. It caused me to gain weight and get very moody. My endo causes immense pain, along my back, down my legs, tummy cramps the works. The coil aggregated it even more due to where my endo is. Perhaps this is the same for you?

I wish you all the best luck. I did persevere for 3 months as docs told me too. But I also knew deep down something wasn't right and I was right!

butterfly95 profile image
butterfly95 in reply to little_fins

Thank you for your reply! I have also had horrible brownish discharge, occasionally with fresh bright red blood in it every day since i had it done.I am going to go back to the doctors this week and demand for something to to be done! I really can't cope any longer! Your reply has made me adamant that I want the coil out now!

Thank you again :)

worth71 profile image
worth71

hi - i had my mirena fitted in july 2011, whilst having a hysteroscopy, had it done awake with no pain relief. the first 6-8 weeks were horrendous, i had all the back pain, the leg and hip pain, i had the most awful cramping, i couldn't stand up straight at times and i had loads of time of work, i was bleeding all over the place and spotting, it was an awful time, but i was told you need to give it 6 months to settle. after the first two months the awful cramping stopped but when heavy bleeding i would get full on labour contraction for several hours each day i bled (i've had two natural births and it was exactly the same pains lol), i also shed a lot of hair too, and it was very greasy and so was my skin, but i guess its just down to the body reacting. as time went on the heavy bleeding reduced, which was helpful as sometimes my periods were so heavy i couldn't even leave the bathroom let alone the house, so yes it did lighten them enough for me to be able to get out for a few hours but i still lightly bled or spotted every single day, i had no pattern to my periods either, sometimes they were every two weeks and sometimes every four. i also experienced the brown discharge and sometimes just gloopy clear discharge, but i was told its all normal for the mirena.

after 12 months my periods started to get heavier and more frequent, the mirena did not lesson my periods as they said it would, it just made them a bit lighter, and like i said i had several hours of contractions for sometimes several days when on period, it was exhausting, so yes after 12 months they agreed to remove it and do an ablation. i didnt get my ablation and mirena removal until march of this year, so the mirena had been in 21 months so i feel i gave it a fair go. they removed it, sterilised me, did the ablation and i also had my lap, and they discovered i had severe endo and suggested full hysterectomy, they couldn't remove any endo at my lap as they said it was too much, and everything in my pelvis is stuck together.

having said all that, and gone through it, i'm still glad i gave it a go, because for some women it can truly work miracles if you can just get past the initial first few months, for some women it settles and does its job and can make your life so much better, so please do persevere with it, it might just work, but you really wont know until its been in for at least 6 months, its just not for everyone and you definitely won't know if you have it taken out now, you would've gone through what you've gone through for nothing. i begged the doctor and hosp to remove it but i was always told give it another three months. if you search mirena you will see there is far more positive stories for the mirena than negative.

good luck xx

Eggcustard profile image
Eggcustard

Hi, I have had mine in for just over three weeks and am considering having it removed later on today. I have non stop cramps, headache, spots, emotions all over the place. It feels exactly like I used to feel before my periods. I have spoken to the nurse who has urged me to wait but I have a 6 year old to look after and school holidays on the horizon. Just don't know what to do really. Good luck x

Louoakley profile image
Louoakley

Did you get on in the end with your coil ?. Xx

Sharontracey profile image
Sharontracey

Had mine fitted 6 April 2016 had all the same symptons

butterfly95 profile image
butterfly95

It's been a long time since I have checked in on here! Finally after 3-4 years of arguments with GPs, nurses and Gynos I had my coil removed four weeks ago! It had started to come out itself! I have to say the coil did start to help with the bleeding, when I had a period it was very light, and they were very rare maybe 2 a year. But the pain was a different story - it was awful! I feel like a completely new person now I have had it removed and will not be having another one fitted again! X

lozz_e88 profile image
lozz_e88

Hi All I had the Mirena Coil fitted in March and having such a bad time with it. I haven't had a period at all since it was fitted. Instead I have an extremely intense burning sensation in my abdomen and lower back, tremendous pressure in my bottom as if I need to go the toilet but can't, constipation and shooting pains down the legs, as well as quite quick weight gain and greasy and spotty skin. When it was fitted the Dr said that it might cause some changes at first, but she said that this would be in the way of more heavier periods with them potentially lasting longer. Again I've had no periods at all.

The burning sensation is getting so bad I feel sick with it, but the problem is that I tried various pills before this and they just made me bleed continually. I don't know whether to wait this out, but the pain really is nothing short of horrific!

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