Mirena Coil...: Hi there! I’ve been... - Endometriosis UK

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Mirena Coil...

Emjay24 profile image
10 Replies

Hi there!

I’ve been diagnosed with Endo for almost 7 years now, since I was 12/13 I’ve tried out roughly 11 pills, 2 injections and have had 2 operations. I was suggested to see a Chronic Pain Specialist and to also try alternative treatments such as this type of coil. Is there anyone here who has tried the Mirena Coil? Did it help you with your Endo? At the moment I’m on Cerazette (Progesterone Only Pill) and I often bleed so heavily and I get terrible aches and pains...

I’ve had a terrible experience overall with Endo, heartbreaking thing was after my operation I was told there may be something else wrong with me.. in which I replied what is it? To only get the answer “we don’t know, we just need to wait and see through time.” I was suggested by a family member to freeze my eggs... can I do that? I’m only 19?

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Emjay24 profile image
Emjay24
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10 Replies
Emay15 profile image
Emay15

Hi there,

I feel your pain (literally!) I was also on the pill for many, many years before it was suggested by my Gyne that I have a mirena coil.

I have had mine since last November. I had the mirena 6 months before I had surgery. Before surgery, it definitely helped with heavy bleeding, but I did have intermittent spotting for about 3 months and it didn't get rid of all of the pain, just the very heavy periods - I haven't had a proper period since then.

Post surgery, it's been much better, they excised a lot of tissue and found I also had adenomysis. The mirena has definitely helped, although it's not the saviour it was made out to be by nurses and doctors. It's made the heavy bleeding and iron deficiency much better.

I will warn you though, it may not be the same for everyone, but for me the insertion of the mirena was extremely painful. However, once it's in, it's in and unless I have another surgery, it's there for 3-5 years, plus I don't get the nasty PMS I used to get on the pill!

Hope that's helpful!

Sammiestock profile image
Sammiestock in reply toEmay15

I have been offered the Mirena coil which they will insert when they do my next laparoscopy ( as it hurt so much trying to insert last time) and it failed to be inserted !

What are the pros and cons of the Mirena coil in your opinion??

Thanks x

Emjay24 profile image
Emjay24 in reply toEmay15

Thank you so much for your reply! Did it affect your weight or any of your hormones? My hormones swing from left to right in a matter of seconds! X

Emay15 profile image
Emay15 in reply toEmjay24

It definitely has. I had my one year post op discussion with my surgeon a couple of weeks ago. Apparently I am one of the rare few who have the hormonal symptom of tasting metal because of the coil, which is definitely annoying but not the end of the world. I have also definitely noticed weight gain, which is really frustrating. For the past 6 months I have run 5 miles 4/5 times a week and eat well and haven't lost any serious weight. Also my PMS, which was bad before has been a lot worse, almost two weeks before my period I get the fatigue, mood swings etc. However, I definitely wouldn't be without the Mirena now, especially as it's the only non surgical and non drastic measure keeping my endo somewhat at bay.

JulesUK profile image
JulesUK

I appreciate it doesn’t suit everyone but the mirena was the best decision I ever made. I’d tried the pill, zoladex twice, hrt etc. Mirena was the only thing that made a big difference.

Emjay24 profile image
Emjay24 in reply toJulesUK

Thank you! X

Marie3811 profile image
Marie3811

Hi tried it it didn’t work for me but everyone is different

Winterd profile image
Winterd

Hi Emjay,

I had the Mirena coil in 2016 so it’s been in for three years. I had it inserted when I had a laparoscopy. I was basically told by my Gp to go for it all in one go and I don’t regret it because I have heard from others it is painful to insert. Whereas I was under anaesthetic and didn’t notice a thing.

I have had 5 surgeries overall- 2 emergency surgeries full open surgeries and three keyhole. I had my first surgery when I was 25 and after that I was told my chances of conceiving were not very good. I wish I had my eggs harvested and frozen then. So my advice is look into that as you are young.

The Mirena has been brilliant, no pain, very light spotting for periods. I really wish it had been an option 15 years ago. Some people don’t get on with it, and some get bad side effects. I have been very lucky in that sense and therefore can recommend it.

Emjay24 profile image
Emjay24 in reply toWinterd

I have been considering it for over a year as I’ve had two Laps! I haven’t been so sure due to the stories I’ve heard. This is pretty much my last resort! Thank you for your insight! X

Sammiestock profile image
Sammiestock

Thanks . I think I need to give it a try x

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