Mirena Coil Good & Bad: Hiya, I'm new here... - Endometriosis UK

Endometriosis UK
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Mirena Coil Good & Bad

Wildling19
Wildling19

Hiya,

I'm new here and I'd really love to hear your experiences both positive and negative regarding the mirena coil please!

I would be going on it with the main aim being to reduce/stop pain (and slow endo) but I've read a lot of mixed things about this - what's your experience? Has it helped your pain?

There are side affects but I keep getting told these are 'rare' - did you experience any? Which ones?

I have been on many contraceptive pills and reacted badly to all of them which is what is concerning me about trying the mirena. Anybody had negative experiences with other pills but joy with the mirena? Alternatively, anybody had negative experiences with other pills and then with the mirena too?

Please help me get an insight in to some real life experiences rather than estimated percentages!

Thanks 🙏🏻

22 Replies
oldestnewest

Same! Just been told I need to try it, but want to hear some experiences first. Help us! :)

Wildling19
Wildling19
in reply to KTL_8078

Just seen your post! 😂 It's funny someone somewhere else in the world was having the same thought as me🤔

Yes, help us please!

Sorry I can't help as I'm in the same situation. Tbh I want to avoid having to take any hormonal treatment as they have all had a severely negative impact on my mental health in the past. I kind of felt like my consultant was going to withhold the laparoscopy if I didn't agree to the coil :( I really shouldn't have to sacrifice my mental health for my physical health. There's got to be a way around this.

My eldest sister had the mirena coil and it caused lupus type symptoms along with a whole host of other issues. She has since had this removed along with her uterus so make of that what you will!

Wildling19
Wildling19
in reply to dinzel

Aw, I'm so sorry for you - I feel your pain!

That is the same with me, totally changed me as a person so feel very reluctant with the mirena even though they keep saying it is a much smaller dose, because I've been sensitive to every single other hormonal treatment I just feel like I must be really sensitive to a change in hormone balance and fear it would be another long trial that wouldn't work. And I just don't want to waste anymore of my life trying to find out to be honest! But on the flip side it MIGHT be the best thing I (we) ever do, and there's only one way to find out.

You should be able to refuse it if you don't want it, as much as they insist - it's your decision. If you'd rather go straight for lap I would just be clear about that and don't back down.

Feeling very frustrated right now at the limited choices all of which I am not in favour of. It's crazy in this day and age this condition has such poor options!

P.s that does say a lot! I hope your sister is feeling better off for it?

dinzel
dinzel
in reply to Wildling19

Thank you for your reply. My sister has said that her hysterectomy was the best thing she could have done. She had the procedure done due to continued abnormal cervical smears and not due to endo. Having said that, they told her that they found scars from endo on her uterus. They didn't look any further than that and she still has her ovaries, so I've warned her to be extra vigilant. So no matter what they do, it seems there are always going to be down sides. Can you tell I'm fed up with all of this!!!

Hello ladies!

I debated whether to have the mirena coil fitted as I’d heard it’s not a pleasant experience but I didn’t want to take the pill.

I went ahead and had the mirena coil fitted 07 August and it was an extremely painful experience. I swore during and literally sobbed for 15 minutes afterwards but the pain literally didn’t last long and I was fine the next day.

However, I started my period 21 August and I haven’t stopped since. I feel like my period is just starting constantly and I’m pretty heavy with clots. I have been told this is normal and the bleeding should get lighter but the mirena coil can take 3-6 months to settle down so I’m just waiting now. I have been told if I don’t stop bleeding or my pain gets too much I can have it removed but I’m not ready to give up on it yet.

My GP has been trying to push codeine on me but I can take it as it just makes me constipated which I don’t need at the moment as bowel movements are excruciating at the moment. I’m just taking paracetamol and lysine ibuprofen.

Every woman is different and will react in different ways. It’s totally your choice if you decide to get the mirena fitted and if you do I hope it works wonders for you 💛

I don't know if you can take it but my doctor prescribed me mefanemic acid for the same reason and it's helped a lot.

For me personally I found the coil resolved my heavy bleeding, the endo pains and the bloating !

I had mine in for over 2 1/2 years and had no side effects or issues but my bleeding got worse again but this is due to a huge fibroid which had pushed it almost out!

I’ve had it removed for 6 weeks now and my gp put me on cerrelle and within a week of being on it the pains came back.

I'm now at day 23 of bleeding, in a lot of pain and very miserable! :(

My consultant has since told me that he thinks the cerelle pill has been the cause of the severe bleeding as it’s aggrieved the endo.

I’m due an op on Monday for fibroid removal and endo and I’m hoping they will put another coil in as I’m miserable like this at the moment!

So for my personal experience is that I’m hoping to have another fitted.

If anything else I can help you with just shout!

Hey, I tried the mirena. I would say it blurred my symptoms but my quality of life was still poor in terms of pain & fatigue. My GP even tried prescribing a pill on top but it didn't help. My endo consultant did say the coil could have aggravated my uterus. May be possible that is because I have adenomyosis as well as endometriosis (??). So, I'm now taking norethisterone to see if that helps.

Hi. I had a mirnea coil fitted in February 19. I had this done during surgery, which is the best option, tried to have one before but it was to painful.

For me, it's been nightmare. I've pretty much been bleeding since April, it's very random, no pattern to flow, heavy one minute, then nearly stopping by next day. I bled for around 20days at time, stop for around a week, then we start all over again.

My consultant wants me on combine pill for 2 month, to see if the settles thing down.

Not ideal, but at moment will do anything to stop it.

Hi there, I had debilitating pains until diagnosed and had a lap in 2015 (endo had cut off the blood supply to my fallopian tube).

After this I went under the care of a OBGYN who put me on Visanne but after 9 months the pains were back, and I had another lap in May 2016 and they put a Mirena in while I was under a general anaesthetic.

Together, this was a life changing event - I had NO pain for the first time in decades, and after 2 very short and mild periods (compared with 10 day heavy flow previous cycles), I have stopped bleeding.

I have had no other side effects that I know of.

My sister also had a Mirena (no endo, contraception only) and she has no side effects either.

So - I love it.

I would caution you also about getting real-life feedback on this forum - people are often active on this when there is a problem and they are looking for answers. They never look at it if all is well. So your view will not be very balanced. I am also guilty of this - prior to the 2nd Lap and Mirena, I was active on this forum. And today is the first time I've looked since then!

I hope this help :-)

Hi there

I had the mirena fitted in March. Have bleed almost every day since then. Little change to abdominal pain but greatly increased pain in my arms and legs.

At my last dental appointment, my dentist said I have badly receding gums, which I didn't have in the previous appointment 6 months before. I searched online and some sources say that the Miners can cause receding gums.

Will talk to my doctor about it next week but if this is true, it will have to be removed. I don't want to start losing my teeth.

Between the prolonged bleeding, no change to pain and possible gum damage, so far I am not a fan.

Good luck with your choice.

A x

PS while I was waiting for my operation, I overheard the gynecologist trying to talk other women into getting the coil fitted almost to the point of pressuring them. Has anyone else had this experience?

I originally had the Mirena Coil fitted about 12 years ago as my periods were very heavy, after my second child. It has been great - no periods and insertion wasn’t painful. As it’s effectiveness wore off I would start spotting, so had another inserted. After my third was fitted I started to bleed after about 18 months. Had investigations and I have fibroids and I’m peri-menopausal (I’m 52, so expected). I still have the Mirena but also having Prostap 3 injections to stop the bleeding but can only have them for 6 months as they can affect your bones. Seeing Consultant again at the end of October to discuss ‘what happens next’.

I'm on my third mirena. The first was great, no bleeding, no side effects. This was before I knew I had endo as the pill had been masking it. The second was fitted after we'd tried for a baby and then decided we didn't want one after all. It was fitted badly and I had awful side effects to the point where I drove around the city to every healthcare professional I could find and begged them to take it out. So it was with some trepidation that I agreed to have another one fitted when I had my laparoscopy in March. I got severe mood swings while it was settling in, not heavy bleeding but bleeding almost every day, which I take mefanemic acid for (this helps!). I know it's still settling in and will be for a few more months yet, but I'm starting to feel better as time goes on, and while I'm wary of hormonal birth control as a treatment in general, I think the mirena is better as you can still ovulate. I'm happy to continue with it and compared to some of our other options, it seems pretty good!

I had the mirena fitted 3 years ago in an attempt to try and have less periods to control the endo growth and severe period pain. I had it fitted under a general as I’ve not had children (the dr did try but my cervix was too narrow).

Anyway it was a nightmare. I had tummy pains the next day as expected but these went on and on and 10 days later I was in hospital with a severe infection.

I had an abscess in my Fallopian tube and ended up being in hospital on and off about 3 weeks, having two surgeries- one key hole, one a large cesarian style cut after going septic! Not a nice experience - I’ve never felt so ill.

Now I take the pill without a break even though I’m 46 as have no other options. I cannot wait for menopause (sadly) when I hope this all stops.

Don’t let that put you off your decision though as this was VERY rare! A lot of my friends have had it even though I was so poorly.

I was really skeptical at first - I've been on so many contraception combinations and all of them have sent me cuckoo.

However after suffering with constant bleeding and horrific pain for nearly 6 months (as well and 19 years of suffering generally) I was diagnosed with an endometriosis and a cyst and my specialist suggested the mirena... So there was nothing left to lose.

It's bloody changed my life. Apart from some erratic bleeding for a month or so - which I didn't mind as it was basically spotting rather than my usual very heavy flow, I've now not had a period or pain for 3 months!!!

I know most people are different but I haven't felt the hormones affect me in anyway because I think they're so minute. The only side affect I've had is sore boobs which I never had before.

I would say just give it a go. You can always have it removed.

I just wanted to say that every person will have their own experience with the Mirena. Sometimes it is worth a try and then wait and see if it works well for you and your physiology.

I have had one inserted post laparoscopic excision of endo and cysts. It would not be advisable for my experience to persuade you on your decision as my symptoms will be consistent with post surgical healing. Has only been 5 weeks since I have had it inserted the main reasons being contraception alongside evidential studies that prove reduction in internal uterine endo growth. Apparently it can take 12weeks to get a good understanding of what it would be like for you.

Chat with a medical professional and discuss your family and personal history to see if the risks outweigh the benefits for you.

As I am a nurse and from a medical standpoint it would be interesting to see what your previous reactions were to contraceptives... what types of hormones were in them and to compare them to the type of intrauterine device you are looking at.

There are non hormonal options but dependent on where you live and what you are eligible for you may or may not have access to them..

Best of luck x

Hi. I had mine fitted start of March during endoscopy to remove cyst & endo. Gave it 6 months & then had it removed mid August. Bled most days for 3 months then pretty much nothing for 3 months which was brilliant but I had permanent bad cramping which for me was worse than heavy bleeding. Scan showed than it had become displaced by one of my fibroids. My gynae removed it in hospital. I also had no sex drive & gained weight during those 6 months. Glad I gave it a go but it wasn’t right for me. I haven’t had a period this month and have started with hot flushes (I’m 48) so hoping it’s menopause & will help the endo. Xxx

So I’m going to be brutally honest here so stop reading now if you have a weak stomach.

Personally overall it’s made my life so much better. There have been ups and downs but I was so anti-coil after a previous experience in my younger years. I take that all back now and do not read all the negative. People tend to post about problems more than positives.

So I had it fit 28th April during lap. I was graded at stage 4 severe endo, multiple endrometriomas removed, riddled in adhesions and 5 hours op time which was only meant to be an hour - it’s still on my bowel and bladder.

I’m not going to lie, the coil has been a rough ride for me but I’m am feeling the benefits now.

So positive first:

- minimal bleeding

- no periods now

- no spots

- no fatigue

- no crippling belly pain

- iron levels back to normal after years of iron tablets and at one point infusions

- swelling episodes lessens

- no more sick days from work

- skin overall feels better, itching episodes lessened

- sex life improved (there is a but..... )

- mood swings bettered

Overall there has been significant improvement however; I will go into the negatives now.

It’s taken me over 12 weeks of preserving with the below to get where I am now but if you stick it out like I did instead of casting it off it may work. I promised myself I would give it 6 months. If I was still not happy after 6 months I would have it taken out. So let’s go, negatives;

- I have literally worn panty lines most days since having it fitted.

- mucus, now let me tell you, this was the one thing that Would have made me have it out. It was vile. Imagine a bad cold, green mucus literally falling out of sporadically for weeks and weeks and weeks. If you read how the marina actually works it’s all to do with said “mucus”. You can do your own google routine for this. There was also blood within this mucus every so often which I think was kind of like my body saying hey mrs we need a bleed here now. This hasn’t happened now for 6 weeks. When I went to the GP for coil check she was happen with it but did say oh yeah I can see mucus all over the coil string - yeah that grimmed me out, but she said it will calm down which it has substantially now. I am still wearing panty liners but there is only smearings now which would just be like normal ovulation discharge.

- sex ..... so my sex drive has increased Jesus I am like a horny goat with involuntary jumping movements 😂 I don’t know who I think I am but I am defiantly throwing some moves out there at the moment and releasing the inner porn star - you can take his as negative or positive! With this. There has been incidents where as soon as we start there is a bit of bleeding and he has departed with some residue, luckily he isn’t Squeamish so this didn’t faze him but I’d say it was happening every other time. But only the first time if I was going for the hat trick 😂 . Regardless I am not sure if this is endo related or coil either way I am good to go now with no risk of accidents occurring - 2 kids later.

- anxiety - after 6 weeks off from a demanding job I was very stressed upon my return. I did get odd occasions of anxiety but I can’t tell if this relates or not given the stressors of life

At the time the negatives have got me down, especially the mucus issue because I felt unclean on all the time but perseverance has paid off for me.

Don’t read all the negatives. There is far more negative online than positive! This is coming from someone who had a previously bad coil experience. What works for one may not work for the other but right now my life is so much better for having the lap and coil. Who knows what the future holds but right now I am just enjoying living my life better after previously being ill for 2 weeks every 4 weeks! I will require more surgery at some point I suspect but that will be thought about when I start flaring again xx

I’ve had exactly the same experience- 2 kids, 1 bad coil a successful lap and a new coil which seems successful but been through all the worst symptoms ever. Worth it I hope too as things settling down now. I expect I will too need surgery again but enjoying life right now as I feel much better. My lap was in February and I’m hoping I will be well for a good few years still. I’m glad you are feeling better right now too. There is hope for us!

Hey!

I had a lap done last October (2018) and found Endo (badly) they put a Mirena coil in at the same time, the first few months were rough..And I didn't see any change in the pain or anything, was still getting periods (although lighter) I went at 4 months to have it taken out but was told by my GP to stick with it and if nothing by 7-8 months then they would take it out no questions asked.

I'm so glad I stuck with it. On about month 7 it all changed. My periods became lighter if not stopped. I went from using the night time pads in the daytime to using pantyliners. The pain got better and better and now almost a year on, I only ever get the pain when I'm due on, maybe the odd bit during the month, but nothing compared to what i was getting. I hadn't heard nothing good about the Mirena coil and was sceptical about it but I'm so glad I had it, it really has worked for me, and a plus side is that it's also a contraceptive so me and my partner of 15 years have no worry about a accidental pregnancy as we already have two boys. So for me/us it really is a winner.

My advice is to try it and stick with it even if it gets a little dodgy and if after 6-7 months nothing has changed, take it out.

Hope you feel better and this helps you in your decision.

:-) xx

Hi, I’ve been on that roller coaster. I reacted badly to pills- allergic symptoms with 3 brands so tried the coil before my lap. It resulted in Infection and a hospital stay for 2 nights. I had a very successful lap 6 months later and diagnosed with stage 4 endo. I then had coil fitted 6 months after and went through most symptoms- even cervical shock! I’m now 10 weeks in and symptoms starting to settle but i had most on the list. It’s a shit ride but endo is shitter so I’m staying on. I think things will settle down now as my body adjusts and periods seem lighter and that means endo should reduce. Sometimes I think we just need to be brave and try to endure things so in the long run we have a better quality of life. Good luck on your journey.

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