Mirena coil/mini pill: Just wondering if... - Endometriosis UK

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Mirena coil/mini pill

DarkStar85 profile image
22 Replies

Just wondering if anyone had any success with mirena or mini pill? Seems all I see are problems being caused with them. I've never got on with hormones since having kids so I'm reluctant to try. Not sure how much it slows down endo progression?

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DarkStar85 profile image
DarkStar85
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22 Replies
CrochetWitch99 profile image
CrochetWitch99

I've just started on a double dose of Desogestrol Mini Pill (or whatever its called) about a month ago and so far I've been seeing some results of not having daily agony but still in pain. Periods are still existing currently and I know I have a while to get used to it but I have been on every single contraception before, including this, and been constantly on my period for over a year on each one!!

So I don't have high hopes on being on this at all currently for me however I'm just hoping it does something xx

Good luck if you go on any of them! The coil was hell for my IBS.

DarkStar85 profile image
DarkStar85 in reply toCrochetWitch99

Ah thats interesting re the IBS, I have it too. I really don't want the mirena, think the mini pill would be easiest to try x

RJane83 profile image
RJane83

hi

Sorry you’re struggling with hormones.

I was put on the mini pill a few years ago it worked for a few months for me but I ended up bleeding constantly and heavy ( always seems to be a thing for me my body just doesn’t seem to respond to any pill I’ve been on- even the implant it’s great to start with but I just end up as I was before) I had the coil fitted early last year it’s helped with reducing flow which is great I’m not running to the bathroom every 5 mins or having to double up with pads & tampons anymore - but not pain for me I’m still having a lot of pain and still very irregular with cycle.

I guess everyone is different - I hope whatever you choose gives you the relief you need

DarkStar85 profile image
DarkStar85 in reply toRJane83

Thanks for replying, sorry you've had a rubbish time. My bleeding isn't too bad as I take transemic acid. It's more slowing down regrowth for me. I wonder if taking a DIM supplement flushing excess estrogen would work 🤔

RJane83 profile image
RJane83 in reply toDarkStar85

it’s worth a go you never know 🤞🏻it might help

I’m limited to what I can take the mini pill and coil are last chances for me as I’ve had unprovoked pulmonary embolisms on a few occasions in the last 5 years they don’t like to give you anything that can increase the risk of clots - i am being re-referred to gynaecologist as they found a 6.2cm cyst on my left ovary ( they couldn’t say if it was endo related or not hence the referral again - if it is endo related im guessing the pill or coil hasn’t helped with slowing my progression)

OlgaSz profile image
OlgaSz

No good news here I am afraid. It was an absolute horror story for me.

There are ways to slow the progression of endo with lifestyle changes, that worked wonders for me. I swear by them!

SunSeaNoSex profile image
SunSeaNoSex in reply toOlgaSz

Hi this is so interesting! Can you elaborate on what lifestyle changes you made to prevent progression of endometriosis? Thank you ☺️

OlgaSz profile image
OlgaSz in reply toSunSeaNoSex

There are so many things that we can do!

Let's start with the things that I eliminated:

- all inflammatory foods, so meat, dairy, gluten, alcohol, caffeine, refined sugar, refined fats, like oils and margarines

- endocrine disruptors, so cosmetics with SLS, parabens and so on - toothpaste, mouthwash, shower gel, shampoo and conditioner, facial products, cleaning products, washing detergent, air fresheners, scented candles, all paraffin candles.

Things I started doing:

- daily yoga - I do 30 minutes most of the days maybe 6 times a week, just before bed. I googled all the best poses for lower back, abdomen and hips and I just do them every day

- ginger tea 3 times a day during period - I found a research that proved that ginger is quite often more effective than pills and I swear by it. It is hands down the best painkiller I have ever tried.

- decaf green tea daily

- seaweeds daily

Personal favourites:

- hot water bottle

- wireless heat pad (I love my SlimPal)

- managing expectations - endo it is a horrible disease and I really try to be gentle with myself on flare ups. My body is already kicking me hard, so I do my best not to add to the misery.

My flare ups are less frequent and not as severe as they used to be. I started to realise the triggers, so they are easier to avoid.

Currently I am researching cold water therapy and it looks very promising. I am not the biggest fan of the cold though, so it is pretty hard to go from the research phase to the doing phase 😅

What are your best tricks to manage symptoms and preventing progression?

SunSeaNoSex profile image
SunSeaNoSex in reply toOlgaSz

Wow! This sounds amazing! Not sure that I can give up caffeine though 😂😂 I will the tea routes and the idea of yoga etc ... They sound like healthy options. I dont have any tricks at the moment, but I am going through a tea phase in the evenings, to help me cut down on the amount of caffeine that i consume, though, but I can cope with one cup of coffee in the morning and I am OK without for the rest of the day!

OlgaSz profile image
OlgaSz in reply toSunSeaNoSex

Giving up caffeine was pretty harsh. I still have a coffee every morning - I swapped the beans for the decaf ones and it does the trick. 😊

If truth be told, all these things combined made bigger difference than the drawer full of meds that I was taking. There were hormones, painkillers, steroids for some skin reactions to meds and so on.. Currently the only meds I am taking is my vit. D3 supplement, since I live in Scotland.

DarkStar85 profile image
DarkStar85 in reply toOlgaSz

Glad to hear you've found relief. I'm more worried about slowing progressing of endo. My pain is manageable, bleeding not too bad. Fatigue is my worst symptom. Don't think I could give up meat chocolate and alcohol 😂 life is miserable enough 🤣 I like yoga though, so I'll do some more of that. Also swear by ginger tea with a teaspoon of manuka honey for extra anti inflammatory kick.

OlgaSz profile image
OlgaSz in reply toDarkStar85

I read many research about endo and it seems that we'll managed symptoms are connected to slowing the progression as well.Dark chocolate is still fine! 🤭

To each their own! I am sure you can pick and mix the things that are good for you. 😊

SunSeaNoSex profile image
SunSeaNoSex

I would be interested in this too!

Fedeg profile image
Fedeg

I got Mirena in for one and a half months now so too early days.

Was astonished at how it has reduced my flooding straight away. So far so good but I don’t deny I have my concerns about the months to come because I read a lot about it that after a while it will give problems.

Consider that I worked a lot with functional medicine to lower estrogens and I will be on a naturopath protocol also to flush out that little progestins that is anyway released into the bloodstream ASAP.

I just want to know if I am ovulating still that’s why I check my basal temperature every day and where my hormones are. Again, some researches and articles say that it doesn’t impact the other hormones, others say yes. It’s crazy.

The only thing is trying. I met 3 (one of whom has endo) girls who have been on Mirena coil for ages and they are super happy.

I would say try it, be patient for 6 months at least and be also on some detox plan to clear out any excess of hormones and toxins. Monitor anything you feel in your body is crucial and find a very good GP.

Keep you posted on what is going on.

Fedg

DarkStar85 profile image
DarkStar85 in reply toFedeg

That's good it's helped bleeding. Mirena is harder to get rid of so I might try the pill. Ive Ordered DIM supplements. Hoping that might help slow progression by flushing estrogen.

Fedeg profile image
Fedeg in reply toDarkStar85

Mirena is harder to get rid of? I have always known it’s the easiest…

You might need also calcium D glocorate. DIM helps with the first phase of excess of estrogens detoxification in the liver. You might need CDG for the second one

DarkStar85 profile image
DarkStar85 in reply toFedeg

Yes its harder to have a procedure to remove mirena coil than to stop taking a pill! Thanks I'll look into CDG. Do you take DIM every day? I've bought it now km scared to take it! Always paranoid of supplements or meds interacting with my thyroxine.

Fedeg profile image
Fedeg in reply toDarkStar85

I used to. Now I have stopped to take a break and I will discuss with my new naturopath what and when to restart

KiwiCookie profile image
KiwiCookie

Hi!

I’ve had a mirena coil since November 2019. It was painful to be put in, but it’s lightened the flow dramatically, although now my periods are averaging 10/11 days whereas they used to be 7 days. I’d say the pain is a lot less than it used to be, although I’m currently seeing a consultant as the pain has started getting worse again.

They’re about to try me on a mini pill on top of the coil to see if that stops my periods as the coil by itself has not. I’m a bit nervous as previously being on the combination pill wasn’t great for me - it stopped most of the pain but the hormones caused other issues for me (I’m hypermobile and dislocated things more often/was in pain a lot more with joints).

I would suggest giving it a go, it definitely took a while to properly work. Like Fedeg says above, give it at least 6 months to work. I’d probably say at least a year to calm the situation down. Prior to having the coil I hadn’t used any hormonal contraceptive so I don’t think I had to wait for anything to clear out any additional hormones in my system.

Hope this helps with some decision making - good luck!

DarkStar85 profile image
DarkStar85 in reply toKiwiCookie

Sorry you've had a rough time. I took the combined pills for years with no problems but as soon as I had kids I've not been able to tolerate at all its weird. My symptoms aren't too bad in terms of heavy bleeding and pain. I just want to slow progression. The mini pill might be easier to try. I have an MRI today to see the extent and what surgery I need. Dreading it!

KiwiCookie profile image
KiwiCookie in reply toDarkStar85

Hope the MRI goes ok! The mini pill will definitely be easier to sort out, plus go on and off of than the coil. Hopefully it will help you out 😊

Fedeg profile image
Fedeg in reply toKiwiCookie

Might it be that the medication released by Mirena diminishes over time?

During Mirena have you noticed/tracked any changes in your hormones?

Do we know how much of it goes in the bloodstream?

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