To Mirena coil or not to Mirena coil? - Endometriosis UK

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To Mirena coil or not to Mirena coil?

lishsquish profile image
12 Replies

Hey all, I'm not sure if anyone could advise me here but I'm not sure where else to go..

I'm wondering what your responses have been to the Mirena coil?

I've had every NHS recommended contraceptive pill, injection, implant - I even had the Mirena coil but it came out* about 3 days after it was fitted. Apart from the Mirena coil, I've tried each of these contraceptive methods for at least 9 months (it was for contraception, I didn't know I could have had endometriosis at the time) and I just bleed or spot continuously, lose and gain weight, mood swing - generally don't feel anything like my happy self! I tried microgynon, stopped taking it after about 2 weeks because I got full-on migraines one after the other, the whole time. I don't think my body is okay with me messing with it's hormone levels - it was torture on so many levels, putting myself through years of trying different methods but with no luck.

* "came out" is a huge understatement for the hours of pain and misery that tiny thing forcing it's way out of me caused!

I was diagnosed with endometriosis last October, I'm 23 and I don't want children. My doctor recommends I try the Mirena coil to stop my periods. After the reactions I've had and explained to previous contraceptive drugs, I just don't know what to do. Obviously I was willing to try the Mirena coil but now I'm so unsure whether or not to have it fitted and try again... if anyone has had similar experiences or tried the Mirena coil, please let me know what you think of the Mirena coil and it's effectiveness in stopping periods/helping endo.

12 Replies
Lovisa profile image

Jeesh you sound like me, I had tried everything they gave me yet my body highly dislikes hormones, I had the Mirena coil in for a year and half and my periods stopped within 11 months "according to my period chart" For me that coil was great to start with, but within months my mood was changing, my sex drive was going and I felt rather meh and my pain also eased up but after a year I was forming new pains so I took my coil out last year. Everyone reacts differently though on the Mirena so it might be for you, but you'll have to try it.

sanchia46 profile image

Have you tried a progesterone only pill?

lishsquish profile image
lishsquish in reply to sanchia46

Yes, first one I tried for over a year before going on to injections.

littlebrownbird profile image

I like the Mirena and I have had success with it, having had two fitted over the past 10 years. (five years each time).

I'm just trying to get it replaced to get my third and final one as that will take me up to and through menopause (I'm 48).

You've got nothing to lose by trying it. I've not experienced the side effects you get with the pill as the progesterone in the Mirena is a fraction of the amount you get from taking an oral pill.

I hope you try it. Also, allow six months for it to bed in but hopefully you will get the effect of light or no periods.

Good luck 😊

JessieP profile image

Same as the above post - had 2 lots of Mirena, 5 yrs each & had great success both times, bleeding stopped completely for me.

Drs often recommend you have had a child before having it fitted, maybe this contributed to it coming out? I'll be honest the part of having it fitted was horrific for me & Ive had 2 kids! This is the only reason I havent opted for a 3rd Mirena this time at 46.

If possible allow it to settle for at least 6mths to get the benefit & see if it suits you, if it works for you, you could be bleed free for 5 yrs!

All the best


Jenburd32 profile image

Hi I had 2 coils over 10yrs as all the other contraceptives didn't agree with me one way or another!! I didn't know I had endo and various other things wrong until my coil was removed 4yrs ago when my husband and I decided to try for a baby! I have cried screamed and shouted wishing for my coil back as that seemed to enable me to live a normal life pain and blood free. I dont know if it would have worked for ever, but I miss it!! I had the occasional spotting and period pain once every few month but nothing too bad! Give it a chance it helped me xx

lishsquish profile image
lishsquish in reply to Jenburd32

Thanks a bunch for the info! I think I'll be giving it another try considering everyone's responses. Thanks again!

I'm 19 and had my coil fitted on the 14th Feb... been in agony ever since. I know it doesn't happen to everyone but this is just my experience. I've made some other posts which explain more what I've gone through. Last Wednesday had a checkup as I couldn't feel my strings and was getting worsening pain... Doctor couldn't find the strings either so I've been referred for a scan (that I am still waiting for) but I went to the doctors again yesterday as the pain is again worsening, spreading to my back and I've ran out of codeine (which I didn't really want to take anyway because bowels etc).. the male doctor was hesitant to see me at first as didn't want to have to do an internal (bless him I think he was just trying to make sure I was most comfortable but I have gotten to the point where the gender of the doctor makes no bloody difference just give me whoever is available!) He listened to my heart did all my vitals etc and then felt my tummy. I have a sore stomach so he checked upper abdomen too and then I turned over and he checked my back for particularly painful spots based on my vocal response and my twitching xD He had me do a urine sample and did all the tests and just said look there is no reason for me to look inside because we already know the strings aren't there and I won't find out much more (which was a relief for me!!) All the swabs were negative etc etc all the typical stuff. He said I really need to have a blood test to make sure nothing too sinister is happening that is being masked by the other pain so I had that this morning. I am also now taking Tramadol and Alverine as well as Omeprazole for my tummy issues.

What happens next depends on the blood test, if something is wrong I'll be urgently referred to either a specialist or straight to a surgeon... if nothing is wrong (too much anyway) then I need to keep on the painkillers until I have the ultrasound and then go from there. I am still in agony and just... urgh I am so tired and I'm fed up of being drugged up but I understand *most* of the doctors I see are doing the best they can to help my situation... the others just don't seem to believe me!! I want this coil out so I can finally have the diagnostic op to see if I have endo or not but if this pain isn't being caused by the coil being in the wrong place then I have to deal with it for another 3-6 months before they consider removing it! This coil so far has caused nothing but drama and pain!! :(

lishsquish profile image
lishsquish in reply to

Oh bless you, I bet you can't wait to get a diagnosis now. You're obviously coping amazingly, I really relate to your attitude towards everything too! I guess you've had your bloods back by now, how are you doing? Really hope you've made some progress, I understand how fed up you must feel - truly!

Since my laparoscopy & diagnosis (I feel lucky as it only took about 3 months from GP referral to surgery) I've had a difficult recovery due to another health issue - won't go into it here but it's been tough. I've had some really great doctors to be fair, but I agree some of them just don't seem to take it seriously.. it really sucks sometimes. There's times when I feel like I can't find the right words to express my problem as well, and when you've basically got to tell an unsympathetic stranger the details of your bowel movements or heaviness of your flow it gets a bit awks to be honest. And my middle name is TMI..

I think having endo demands that you change your lifestyle - whether you want to or not! I feel like doctors I've seen have basically told me that the coil is my last/only management option, but I really don't want to do it! I've been toing and froing about getting it refitted for weeks now so in the meantime I've been taking my health into my own hands! In seeking my own management/coping methods (that makes the most sense to me) I've decided to change my diet and focus on managing my symptoms based on what foods I eat or cut out. I'd like to be able to say to doctors that I don't need the coil, because I'm in control of it naturally. I've never paid any attention to my diet really, I'm a bit thinner than I should be and I think this is the right thing for me. I'm already feeling the difference! I'd recommend looking into endo diets definitely. 😊

in reply to lishsquish

Thank you!

Bloods came back the day after and all seem fine, which I am happy with don't get me wrong but I wish that something was wrong just so I could just get this pain out of me. The coil has honestly made my pain worse than anything... not better at all and the random spurts (to put it nicely) of flow when I am out and about after a whole 24+ hours of nothing is irritating as before the coil is was constant flow or just the usual ease into it start with spotting. I am ALWAYS wearing a full on pad, can't even trust just having a panty liner on anymore its just not enough.

And I completely understand the whole tmi thing, yesterday I had an ergonomic assessment in my uni bedroom for lots of lovely free stuff via DSA because I am a first year uni student and thankfully in uni just having anxiety and chronic pelvic pain is enough to get a fuck-ton of help and free stuff... and I am going to accept all I can get really after being passed off for all these years... Even though I am getting a free laptop and recording equipment for lectures due to pain messing with my concentration... I am most looking forward to the special chair I'll be getting as long as DSA accept all the costs, apparently its really going to help with the back ache and pelvic ache I get from sitting for long periods of time and I can adapt everything to fit me perfectly and its mine to keep (I looked it up on their website - why the heck do chairs cost £800+ just for ONE!! and that was one of the cheapest not even the one I'm getting) but anyway I went off topic, as the lovely man was leaving he asked what was actually going on medically just in conversation and I spent a good 5 minutes at the door explaining the coil and everything and he was sympathetic and talked about how he had a back injury and had to take tramadol and it messed with him (as I mentioned I was taking it currently) but after he left I realised how much I had just offloaded onto this poor man who just came to measure me up for a new chair and order a desk and laptop stand for bed, carry case etc... I always manage to ramble as you can see here but usually its all about my health and I feel bad after even if the person I'm talking to wants to know.

I am really frustrated at this point, like I don't even have a diagnosis and they are already telling me the coil is the last option... its all a bit backwards really... and I am STILL waiting on this damn ultrasound... the pain has eased a bit, its not so continuous but its sudden and stabby now so even though it only lasts a few minutes its almost paralyzing when it does hit. Especially as its so low down and deep my legs (especially my right one as it usually hits on the right side the worst) just give way... boom gone I have to sit on the floor or lean against something just so I don't collapse. Part of me dreads everything that is coming up... but another part of me can't wait for it to come so I know what is wrong with me... well at least a diagnosis for one of the many things wrong with me!! xD

I'll deffo look into the whole diet thing... especially as since coming to uni in September I've had control over what I eat... although my hormones don't help the urge to binge eat which is terrible at the moment!!!

I hope everything improves for you soon.. and I am happy you got seen to so quickly... I just hope the repercussions of it don't continue to be so pooey for you!! xx

Mimi4975 profile image

After suffering with Endo since I was 15- only diagnosed with moderate to severe Endo when I was 30 after a laproscopy & 6 months of Zoladex implants/HRT tablets to conteract loss of bone density. I had the option of a Mirena coil fitted during surgery which i agreed to as I would have tried anything to ease pain!

I am now 44 -two laproscopys /Cystoscopy later- now on my third Mirena coil it changed my life for the better, I still get PMT badly and some bad cramps/nerve pain but the heavy bleeding has ceased- the bleeding is always bad for a few cycles after being fitted with a new coil but it soon settles down. I got my life back & can enjoy going out & leading a normal life most of the time :)

LindaML profile image

Hey, had my mirena for 3 months and had to get it removed yesterday due to adverse side effects. It is not for everyone.

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