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Endometriosis UK
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Advice on the Mirena Coil

Hi all, I had my first gynecologist appointment last Wednesday. They are pretty sure that I have Endometriosis but I'm currently waiting for further tests and examinations to confirm this. While I was in the appointment I was advised to have a Mirena coil fitted to balance out my hormones. I have been online and read some good but mostly bad reviews about this coil. I was wondering if anyone that has had it good give me some advice whether the coil worked for them or not and if it didn't how long did it take for your gynecologist to agree to remove it? Thanks.

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Hi, if you do search on this forum you’ll find this question comes up regularly. As you say, the Mirena gets good and bad reviews. Clearly it doesn’t suit everyone but perhaps women who have trouble with it are more likely to comment... Certainly when I had my first one back in 2003, I made some negative comments at the start. But after a few months it settled, I started to feel better and stopped commenting. It gave me ten years pretty much symptom free during which time I posted nothing. Then last year my symptoms came back (I hit menopause) and here I am again...

I decided to opt for the Mirena originally because it was a low dose hormone treatment which has shown positive results in clinical trials. It won’t work for everyone but I believe it has a good chance of success. The tricky bit is the first few months. If it causes you unbearable problems, other women here seem to have found those problems rapidly disappear once it’s removed. It’s much easier to remove than put in - you don’t need to go back to hospital. You can check with your doctor about your local services, but mine recommended using a family planning clinic as they are very used to them. So I’d recommend giving it a try. Sadly with endo none of the option are ideal.

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I have the coil and had it put in during one of my surgeries as I have too much pain to tolerate any phyisical procedures or examinations when I’m awake. The coil gave me a life back. I went from 3 week periods where I was housebound for 1 week due to heavy ness and now I have maybe a 3 day light period every other month. For some lucky people their periods stop altogether. Mine took around 11 months to settle but it was nothing too awful considering I was already dealing with 3 weeks of bleeding. It just turned into spotting and then eventually stopped. I am still so cross I never tried it sooner as I was too frightened by all the negative stuff you can read online. As soon as this one runs out another will be going straight back in xxx

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Tbh I am considering having it put in, I’ve had really bad periods since i was 13 and I’m 25 now. The pain is beginning to become so unbearable that I can’t go to work. I’m bed bound for more than 3 days each month and I can bleed heavily for up to 17 days, even when taking the pill. Thanks for your advice xx

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I'm Mirena coil after 6 months gave birth last year. Before I have heavy period and sent to A&E. Now I have Mirena the period is less but I have light period/ brown discharge 2/3 weeks maybe its help sometimes not like before. I have GNRH injection didn't help I always have a hot flush and super pain.

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What you will find on here is mainly bad reviews and experiences of the marina coil. However, I have had the coil for almost 2 weeks now and I am still in moderate pain but nothing different to what I was in before. So far I have NOT bled whereas without the coil I was bleeding 24/7 which is excellent!!

Drop me a message if you want to chat, I’d be more than happy to talk about it all xx

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Mirena****

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Thanks for the advice, i did try to direct message you but for some reason it wouldn’t send x

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Messaged you x

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Jelleytots, I’d say give it a go. It affects everyone differently and there’s a chance it will help with your pain/bleeding without resorting to surgery. Just be prepared to give it 6 months to a year to properly settle.

I’ve had one fitted due to painful, heavy, long periods and regretted it immediately but now 5 months in I’m nearly pain free and the constant bleeding seems to have abated.

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Thank you, would you recommend waiting to find out test results before having it fitted?

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You can have endometriosis and not been detected in the tests. I was diagnosed with endo at my 33 since an endometriosis cyst appeared, after diagnosed i knew that my endo started at 17 years old. The soon you get the treatment the better since the mirena protects you against the endo progression.

Follow you doctor advise, if they advise you to get the mirena It is worthy to try. To take the mirena inserted Is one of the best things i have done. Just keep one thing in your mind after getting the mirena: give to It 6 months to settle down. The first 6 months you could experience some side effects that Will dissappear with the time, It is worthy to give It a chance

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I got more a coil after surgery but I was ill with headaches and joint pain and also gained 3 stone in just 8 months when I got it taken out all symptoms went away even though doc said they were not due to more a coil so I would not advise personally x

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I had one fitted in December by my gynaecologist (was fully prepared for requesting hysterectomy (I know it may not work but was so sick of endo)) and whilst initially I had discomfort pain and had to get used to it! I’m so glad I stuck with it! It’s given me energy back to be able to exercise to keep other symptoms at bay (anxiety and depression) .

They say not to use tampons with it at first, but I couldn’t cope with pads (felt like I was back at school!) so am back with them. I still have periods but more infrequent and so light that I now am yellow tampons (always was orange/green beforehand) plus I imagine this is what non endo sisters feel with a period 😝 what I would describe as mild/light period pain, doesn’t even come anywhere near the pain you would be used to with endo!

I also wish I had it years ago and will continue with the coil for as long as I need to!

It may not be right for everyone, but i find it’s about accepting what you can tolerate to minimise our symptoms

Good luck x

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I got merina IUD inserted almost five years ago and it’s been treating me well except for the early months till my body got used to it. 6 months ago my two periods were extremely bad and relived my symptoms or may be worse. However it didn’t occur again, and that could have been due to the fact the merina needs to be changed. So I will be getting it changed in another 3to5 months.

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I have relied on the coil for nearly nine years to manage my painful and heavy periods - I’m 27. Before I had it I wouldn’t be able to leave my bed for three to five days every three to eight weeks. For seven years I had no periods at all and would say it’s definitly worth a try. In my experience it does take six weeks to properly settle in and stop spotting/light cramping. If you do decide to go ahead I would recommend taking painkillers before having it inserted as it’ll help. Good luck x

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This is a really hard one. I would never advise anyone to have Mirena because it caused me so much pain that the monthly period/endometriosis pain paled in comparison. That said, if you have had children, can have the coil fitted during surgery and tolerate the pill then it could work for you.

They say that Mirena is low dose, but the thing to know is not so much the dose of the hormone but that it is androgenic. Which for me meant huge weight gain around the middle of my body and hair growth (like beard hairs on my chin) also bloating so that i looked pregnant. The worst was actually not that but the pain - pain down my leg, what felt like stabbing pains on one side that would take the wind out of me. It also triggered ovarian cysts, which caused me longer term problems with pain and irritation when they burst.

I stuck with it for 6 months but things weren't getting better so I had it removed and had a lap to have endo and a large cyst removed. There are coil options that doesn't include hormones. There are also smaller coils than Mirena since the physical size is a problem for some people.

Good luck!

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I had the Minera fitted and had it in place for just over an year and it did not work for me, but I think my body just couldnt tolerate the hormones. Was still in chronic pain, bleeding heavily daily and vomiting to a point I ended up in hospital.

Yet a friend at work has had the minera for many years and had it changed twice and it is the best thing she has ever done!! Has no periods or pain at all or any weight gain

So I think its different for every one and every one has a different experiance. It was a little uncomfortable going in and not painfull at all coming out

I'm currently on Prostap thats working, but has its own set of problems- but any thing is better than the chronic pain and bleeding so a fair swap!!

Hope all goes well for you x

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Probably, not everyone has good experience with the mirena coild and on the internet you will find a lot of negative stories. But mirena coil is one of the best treatments for endometriosis. It is worth you to try it.

I have the mirena since december 2016 and (although It took a time to see effects on my endo) i am very very very Happy with It. Right now, i have absolutelly no endo sympthoms and my endometriosis cyst has shrunk up to a point that I do not need surgery anymore. Mirena save me from getting a surgery.

Also, i do not have any side effects except for no menstruation (thing that I love). The first months i experienced some mood swings, but nothing important :)

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Hi,

I’m on my second Mirena. My situation was similar to yours, except they diagnosed the endo when I was 22 and they did a laparoscopy.

I occasionally (once a year)have very very light spotting. This happens when I’m unusually stressed + haven’t slept much (I keep watches sometimes) + haven’t exercised and am not eating properly.

It fixed my endo symptoms and an added bonus is it leveled out my moods. I had the first one inserted surgically and the other one inserted through the cervix (with a local anaesthetic.) I haven’t had children so that hurt a lot. I also love that it is hassle free, it lasts for so long and it is a very good contraceptive.

In short Mirena really worked for me on many levels.

Good luck.

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Hi, it certainly helped me. No more heavy periods although I did still get some bleeding it was very minimal. The reduction in pain was amazing - like I’d forgotten what it was like to not feel it! I think the problem is is that no one treatment will be the same for everyone so you need to give it a go. I know it’s pretty stressful not knowing for sure that something will or won’t help but it could just be the thing helps.

I did also do an elimination diet where by I stopped eating and drinking anything that has natural oestrogen in, i then gradually reintroduced them one at a time and found that there were some things that really upset my endo and also gave me serious bloating my biggest culprits were coffe, peanuts, soya and thyme, so that might be worth a look at! (A quick google will tell you all you need to look at!)

Good luck 🍀

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I had the mirena coil & the jaydess. Both disastrous - the pain and awful moods were one thing, the lack of support from my GP surgery both times a whole other.

The first time my Dr wouldn't believe I was suffering pain after months. I turned to weed to deal with the pain and now have terrible anxiety when I am around people getting high.

My GP lied to me the second time about the procedure, and about getting it taken out. My faith in the medical establishment has been destroyed.

If you do get it inserted: tell your dr how much time you are willing to wait for the pain to settle and if it passes that point do not let them budge on it. It is your body! It's an absolute violation of your bodily autonomy if they try to make you have it for longer than you are comfortable.

GPs in the UK are apparently paid to push the contraceptive coil. I would be very wary about them suggesting it - why do they think this is good for you?

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Hi, I'm new to this so sorry if my reply is abit bad! I'm 19 and had the coil put in when 18. It has helped reduce my endometriosis pain, and it has reduced how much I bleed when on. However, you do experience cramping for the first 2 weeks. ALSO, it has increased how long my periods are. I've had a period for 24 days with a week break, then a 40 day period with a week break and now I've been on for 2 weeks. It has made my mood go very low, however this is apparently common in the first 6 months. I'll let you know how I get on in the next 6 months, at this stage it's been positive and negative, but you need to give it time to get used to your body, you'll never know if you don't try! Hope this helped :)

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Yeah please let me know, I have my second appointment on Tuesday where they are doing an internal scan to look for endo, which apparently the gynaecologist specialises in. Also while I’m there I’m apparently having the coil fitted which I’m definitely not as I haven’t made my mind up yet. I’m worried that it won’t agree with me and they refuse to take it out. I’ve literally had enough of being in pain and constantly bleeding so worried that the coil will make it worse. Please keep me updated on your experience as this will definitely help me make my decision. Thanks for replying xx

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