Mirena coil: Hi all I'm new here. Has... - Endometriosis UK

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Mirena coil

Shelley85 profile image
23 Replies

Hi all I'm new here.

Has anyone been offered this a form if treatment and has it helped?

I've been pushed into a corner by my GPS to have this done tomorrow (on the basis that my complex medical history will make it unlikely for a specialist to do a lap on me)

I was taking a pill to regualte and control my periods as I would be heavily bleeding and in agony for 3 weeks or more at a time they have withdrawn them as they say they are dangerous and unlicesned for endo management (they were prescribed by a consultant gynae that i saw at a private hospital)

I'm fed up with feeling so ill and I feel like I'm being fobbed off alot by the docs its hard work with two little ones the fatigue alone makes even the simplest of days a real challenge.

Any advice is greatly appreciated x

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Shelley85 profile image
Shelley85
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23 Replies

Do you mind me asking what pill you were taking?

I have no experience of Mirena, like you I expect to be encouraged to try one as my next treatment option. I was on Cerazette but it's not agreed with me X

Shelley85 profile image
Shelley85 in reply to

I was on co cyprindiol but apparently it is not licensed for use in endo especially as a long term management so they withdrew my script for it x

LauraB_04 profile image
LauraB_04

Hello Shelley,

I sympathise with your feeling ill & fobbed off!! I had a Mirena Coil for about 5 months - I certainly didn't experience any of the horror stories you will find if you look up the Coil!!

Mine was fitted during a laparoscopy, so I can't say whether that part is really as painful as they say, but I found looking it up that you should make sure you have pain relief before the procedure so that it isn't so uncomfortable.

After it's fitted you can get some twinges (like a mild period pain!), but as I mentioned, mine was during the lap, so I had twinges from that anyway - I didn't think it was as terrible as everyone makes out, but we are of course all different!

They do most certainly reduce the flow & there is far less chance of breakthrough bleeding than on the pill & as the hormones are released at a far lower rate, there is less chance of side effects as associated with a lot of the standard pills.

The most important thing of course, is not to be pushed into something that you aren't prepared or comfortable with!

Are you currently seeing a Gynae to help with anything?

Hope that might help a bit - keep going & I hope it goes OK if you go ahead xx

Shelley85 profile image
Shelley85 in reply to LauraB_04

Thank you for your reply. I was seeing a private gynae but as my medical cover doesn't cover contraception (even though it was for endo still doesn't count apparently) I was referred back to NHS. Unfortunately I seem to be stuck at themoment. I have been left without any meds to help for over a month now heavily bleeding and in pain so tomorrow is the day I'm having it done. At least to try it, I have got them to agree that if the bleeding doesn't settle within 3 months they will remove it and refer me asap.

I was never keen on the coil but now I am desperate. The only pain relief they have given me is tramadol which I can't take as it wipes me out and I have two little ones to look after as well as working. (Unfortunately due to having a rare blood deficiency o have restricted pain relief options and the GPS aren't as helpful in getting the right people to see me) due to my deficiency my blood doesn't really clot so I bruise and bleed out very easily which makes my bleeding so unbelievably heavy.

I need a break from being so poorly they are apparently giving me some pills to take along side the coil for a while but they haven't said what it is.

Did you find an improvement with the pain and other symptoms of endo, like fatigue etc ? x

LauraB_04 profile image
LauraB_04 in reply to Shelley85

3 Months is a reasonable length of time - do try & stick it out, because it does take a while for your body to get used to it & the lining of the womb thin out!

I was exactly the same - I said no before my first op & when I was struck down with endo again about 9 months after I decided I ought to give it a go!

Good that they have given you some pain relief, although as you say it's no use when it wipes you out - I have codeine at the moment, but all I want to do is curl up & sleep with it... If only there was a simple answer :-s

I wonder what the tablets are for that - Norethisterone is supposed to stop bleeding, which I have been constantly taking, so perhaps that would help?

The trouble is my pain has never gone since the op, so it probably wouldn't be fair for me to say! The bleeding did settle down more, but my Gynae then decided to whip it out to see if it was the cause of the my on-going problems! Sorry, not a very positive answer - I think my problem is mostly that they think they left some endo behind at my last op.....

Hope you get to see good Gynae soon & get some better help xx

Shelley85 profile image
Shelley85 in reply to LauraB_04

I feel quite hopeful but then I don't want to be disappointed I guess.

If only there was a quick fix! Yes the do make you sleepy which is not so helpful when you need to be awake.

I have had norethisterone before which made a massive difference and 3 weeks of coming off them meant I could conceive my daughter after trying for over 2 years :) maybe they will give me them along side.

I am a bit nervous about tomorrow I'll be glad when it's done.

I def want to give it a good go any improvement would be something even if it just helps me manage more until I can get referred to a specialist.

How are you now? Will they op again for you? I hope you are feeling better soon.

Thank you so much xx

LauraB_04 profile image
LauraB_04 in reply to Shelley85

I understand that feeling for sure!! At least if we look on it as positively as we can then we can't be told it's in our head ;-)

Wow that's great if they work - make sure you get those if the bleeding doesn't settle too quick!

Will think of you - hope it isn't painful!

A stop-gap is like you say, at least better than suffering so much if it can relieve you until you get some more professional help :-)

I'm not good at the moment, but am having Peritoneal Excision op next Monday, so counting off the days which is nice & positive :-)

Hope all goes well - let us know how you get on with it xx

Shelley85 profile image
Shelley85 in reply to LauraB_04

Thank you I will keep you posted and please let me know how you get on too.

Good luck for your op keeping my fingers crossed for you xx

LouMaffers1982 profile image
LouMaffers1982

Hi Shelley. Sorry to hear you're having such a crappy time getting people to listen to you. I tried the Mirena as a last ditch attempt - i HATED it. My hair started to fallout, i had crippling migraines and nausea, i became very depressed (no h/o depression previously)...and many other side effects. I had it for 18 months before they would take it out! - the strings had curled up so i couldn't remove it myself (i tried trust me!). The doctors ignored me and said my symptoms couldn't be the Mirena because its a local uterine release of hormone - this is total bollocks. I researched it heavily (theres a lot of research done in the USA if you're interested)- after 2-3months the progesterone circulates systemically, which makes perfect sense. Im an experienced,assertive Midwife and i had such a hard time getting them to listen. They took it out and 3 weeks later all my symptoms had cleared - as i knew they would.

Now..be reassured that i am SO SENSITIVE when it comes to hormones, like ridiculously so!...i have advised hundreds of women in my job re. contraception etc - and so many women LOVE LOVE LOVE the Mirena!! - totally transforms their life for the better!:) - others really don't get on with it like me. I'm not telling you this to scare you, I'm telling you to empower you hopefully! :) - after all knowledge is power. Perhaps voice a plan that if it doesn't work for you then when will they take it out? - would they want you to try the OCP with the Mirena before they'd remove it? whats the backup plan? You know your body better than ANYONE. So of course explore your options but please don't be pushed into anything...and if you feel rotten on it then know that it's not in your head :)I really hope that for you the Mirena is your turning point :) Please feel free to ask me anything else.

Sending you heaps of positive vibes, let us know how it goes tomorrow.

Please don't feel trapped because there are ALWAYS other options to try - if your doctor says this is your final option then get a second...third...fourth opinion - i did!...and it made such a difference. Just another note then ill stop rambling on ;) - i don't have any children so to have it inserted was incredibly painful - but women that have had children usually have what us Midwives call a 'multips os' - which basically means your cervix never completely closes again - therefore its usually much easier to insert the rod through your cervix and the coil into your uterus - lots of women say it was pain free! Hope this helps :)

xx

Shelley85 profile image
Shelley85 in reply to LouMaffers1982

Thank you.

We have agreed a plan of 3 months as that was what I am comfortable with.

Sorry to hear you have a rough time with it.

In terms of having it put in both my babies were born via c section so would that mean my cervix would be as if I hadn't had children (sorry if that is a silly question) also I have a tilted womb I'm not sure if that makes a difference or not. What's OCP?

In terms of the back up plan there isn't one I'll go back to having nothing until I get a referral appointment apparently :/ xx

LouMaffers1982 profile image
LouMaffers1982

Did you labour at all before your sections? If so theres a chance your cervix will still be open a bit. If not then it'll be through a closed cervix yes so ask them to numb your cervix first - they use a numbing spray/or use gas and air. I didn't use either (wasn't aware it was an option until after!) and thats why mine was so painful. If your womb is tilted that could help :)..or not - its good they know this before putting it in though :)

Sorry OCP is oral contraceptive pill - midwife speak!

Im sure you'll be in and out of there in no time :) - wishing you lots of luck for tomorrow

xx

Hopefully this time next month you'll be feeling so much better.

Shelley85 profile image
Shelley85 in reply to LouMaffers1982

My first baby I went into labour but ended up with an emergency c section.

They have mentioned about taking a pill along side it but they haven't explained what yet they are giving me it tomorrow to take along side whilst the coil.is settling in.

Fingers crossed I will be. Thank you for all your help xx

Tanni profile image
Tanni

I had the coil fitted. During my first laparoscopy nearly 4 years ago, it has stopped most of the bleeding....it did take me nearly six months to get used to it but it was worth it! I do normally get monthly pain but will only get a bit of spotting but usually only when I go to the toilet.

I do still get a lot of pain with the coil but nothing like I used to with out. It's only been the last three weeks that I've really been suffering but that's due to endometrium cysts on both of my ovaries.

The hormones with the coil I was a bit up and down for a while but much better than I was on the pill.

It's a very difficult discision to make, I was told buy my gynae consultant that it would help reduce the endometriosis so when I went in for lap I said I would have it fitted only if I had endometriosis as I didn't want it if I didn't.

I have got a retroverted uterus and I was told after that they would not have been able to fit it while I was awake...so I dread having it removed!

Only do what you think will help, in my experience I found it helped after about 6 months until now....and that's worth it surely?

Unfortunately I've never been completely pain free which is the worse bit! Xxx

Shelley85 profile image
Shelley85 in reply to Tanni

Thank you so much for your reply. Its def worth a go even if it helps a little.

Glad to hear the hormone isn't as strong as the pill x

Shelley85 profile image
Shelley85

So I've been in this morning it didn't go so well :( it is in though

Turns out my womb is very far back and tilted she couldn't get it in every time she tried my womb just folded up on itself so she tried to numb the womb to put in an instrument to pull it forward and hold it in place which was super painful. Because of my blood disorder the instrument has made me bleed so I'm I've got to keep an eye over the next 24 hours if it doesn't settle or gets worse I need to go back in asap. They have left the threads long so they can pull it out quickly of need be.

So I'm in alot of pain and feeling wibbly keeping my fingers crossed that the bleeding settles within the next 24 hours x

LauraB_04 profile image
LauraB_04 in reply to Shelley85

Sorry to hear you didn't get on very well :-(

Make sure you look after yourself for the rest of the day xx hope the bleeding does settle down for you x

Shelley85 profile image
Shelley85 in reply to LauraB_04

Thank you, fingers crossed this works now. She did talk a about micro wave therapy if this doesn't work and run through some more options she was def the most helpful doctor I've seen so far xx

LauraB_04 profile image
LauraB_04 in reply to Shelley85

Glad she was helpful - it is so much more reassuring like that :-)

What is micro wave therapy?! x

Shelley85 profile image
Shelley85 in reply to LauraB_04

I'm not 100% sure she just explained that it's a treatment that thins the linining of the womb but its a Permanent treatment so wouldn't be able to have children after (its micro something I'm sure she said waves but the meds were kicking in then making me woozy) xx

LauraB_04 profile image
LauraB_04 in reply to Shelley85

I was hoping it was a miracle pain treatment! ;-) Not one for me to pursue then, as I'm only 21!!

Has your bleeding settled down at all yet? xx

Shelley85 profile image
Shelley85 in reply to LauraB_04

No unfortunately not. I did say I was looking for a miracle cure she was very sympathetic and said there are other options. Yes not an option yet for me either maybe one day when I know for sure if I want any more children or not.

No not yet I'm resting and hoping that come the morning it will have settled.

The pain has increased so I'm back on the tramadol xx

weeannieanne profile image
weeannieanne

Hi Shelley85 ive just had 2 fibroids removed a biopsy done& the mirena coil fitted all in the 1go last tues. I took painkillers b4 app& think that helped. I to felt pushed into a corner but was desperate as extremely heavy constant bleeding was horrendious. I didnt feel much just a wee nip while whole procedure was going on. Indeed returned 2work the following day. However was sent home nxt day feeling hellish. Sick frozen def a temp headache &in lot of period type pain. After painkillers co codamol & lots of sleep felt better. Over wknd ive slept most of the time. Actual procedure wasnt to bad. Have started bleeding 2day wed but so far nothing much. Pain getting better. Good luck hopefully it works for us both

Shelley85 profile image
Shelley85 in reply to weeannieanne

Thank you I am.currently off work the procedure didn't go to well as my womb was in the wrong place so they ended up needing to get an instrument to pull it back and hold it in place (painful to say the least) I'm bleeding now because of that so the doc has put me on bed rest. I'm still hoping it will help fingers crossed for you too xx

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