Mirena Coil alternatives??: So I was... - Endometriosis UK

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Mirena Coil alternatives??

gc1990 profile image
19 Replies

So I was diagnosed with endo in April my gynae inserted Mirena Coil at time of lap after removing endometrial polyp - since having it fitted the heaviness of the bleeding has halved howver my periods are more inconsistent than ever and long! I know it takes a few months to settle but 4 months and I'm bored already on top of this j get twinges of pain which are different to endo pain than I had cramping in uterus right down into the tops of my legs sometimes just a small twinge but enough to make me stop to know it's there for a second! I've also out on a lot of weight in a short time which to me is the worst thing - I'm due to see my gynae this month and probably going to ask to have it taken out - I used to be on Yasmin years before and the symptoms started after I came off and went onto noting - is anyone on this for endo and does it work for them I don't know if by chance the symptoms started after I stopped or I had it before and it was that good at masking it I didn't know! Is it worth sticking with the coil for a few more months or asking to change back ? SOOOOOO basically after that essay what I'm trying to say is

Yasmin - does it work for endo pain?

If not what alternatives are there?

OR shall I stick the coil out for longer ? ( I would rather not if honest)

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gc1990
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19 Replies
Sadie_louise profile image
Sadie_louise

Hello,

I also had the coil fitted at the beginning with march and been battling with the same symptoms in fact i haven't stop bleeding at all the pain is so bad i'm on strong pain killers and also put weight on I have been back and forth to the hospital to fight to get this thing out I have been told to wait another month for it to settle but there is no sign of it settling, but you may have the same fight because other alternatives aren't the best to treat it. I have found yasmin the best but caused problems after using it long term, also the gynae argues that although the symptoms may be minimal on it it doesn't stop the growth of endometriosis its best to talk through all the alternatives and sometimes the coil will settle for some people its just a waiting game and how much you can take of the symptoms.

Hope this helps in some way x

gc1990 profile image
gc1990 in reply toSadie_louise

Thank you yes it does what problems did the Yasmin cause ? I found it best for me but like I said before I'm not sure whether that was just because I didn't have endo back then or whether it just masked the symptoms! I don't want to endo to spread as it's not hit my ovaries yet so fertility is looking good for the moment but at the rate I'm gaining weight its getting me down and from being 5ft 2 and going from 9 1/2 stone to 11 looks ridiculous on me!! I think I'm going to try battle it out with them, have you still got the coil ??

Sadie_louise profile image
Sadie_louise in reply togc1990

The symptoms i had were constant bleeding and gradual pain on yasmin this was after a few years of taking it but i agree it was the best one i was on but unfortunately it spread whilst i was on so was no use. I am also fortunate like you to have healthy tubes and ovaries so fertility is looking good at least they can keep a close eye on you to avoid infertility unfortunately though there is not a lot that stops it spreading but because it has been found they should be able to keep it minimal. I have also gained weight which makes me very conscious and paranoid i know how you feel with that one but sometimes that can change if the coil decides to agree with you. I still have it in at the moment but im back in 2 weeks to discuss taking it out and what other options there are. Are you having mood swings too? X

Heidi11 profile image
Heidi11

hiya i've had the merina in twice now, the first time my GP put it in for me to try and control heavy bleeding I had all the same symptoms and also terrible depression, I had it out 12 months later in 2011. In 2013 I had polyps removed and the Gynae told me to have another one in at the same time, I did, reluctantly and this time my symptoms were much worse and so I again had it taken out 10 months later at the disapproval of the gynae. I just feel we all know our own bodies and no matter how much the doctors recommend different treatments it should be left up to us on what we do at the end of the day.

casme24 profile image
casme24

Hi, I've had my coil in for 13 months now, it was put in during my lap and diathermy treatment. I haven't had any bleeding issues apart from my period can be a bit irregular and I feel I've gained weight and get acne flares. My pain has eased but mid cycle is horrendous often with me ending up in bed and on morphine. My next option is Zoladex but I am very reluctant to have it. I was on Yasmin for 4 months before my op and felt quite well on it so I'm thinking about asking for that again.

I would give the coul another 2-3 months if you can bare it as they don't tend to consider it a long enough trial if it's taken out in less than 6 months.

Hope you find a way forward.

Alina_Mihaela profile image
Alina_Mihaela

Hi,

I had my op in back October, stage four endo, real symptoms have returned in May this year, when I contacted the GP to have my mirena fitted.

Before the surgery I was on period for two three months and just two three days off. Alternatively I had heavy bleeding as well. Pain all over the place and all the other symptoms like everyone.

Mine was fitted in June and so far I am experiencing: long periods, blood clots, alternatively black and fresh blood. At same time I have lost weight because I have a severe sickness, which I was told is a side effect of the coil. I also was made aware that it can take up to 18 months for the body to adjust. I am also experiencing acne flares on my face and back, this is usually a sign for me that something is not quite right so I am slightly worried. My gynae doctor and the nurse, both have been helpful with my situation and both said to give time to the situation. If the sickness persist request pills from the GP, and about the bleeding as long as I don't end up with fever and throwing up I just need to keep my efforts in control.

My condition is very conditioned to stress, because of my college recently I had a 20 days period, now it is not stopped it is just acting like I am in my last days.

With regards to Yasmine, I tried them for near a year and it did not work for me, back then I was not aware of the endo either and now I realized that it was the official symptoms of endo.

In case this will help I wish you good luck and hope your body will realign to work my the coil. I am not over happily of the treatment but when before I was on anything let's just say it is an alternative I am trying to make it work.

Keep well ladies x

mollymarie71 profile image
mollymarie71

Hi. I too had a coil fitted last October 2014 due to adhesions & really heavy bleeding. The coil was fitted & it's taken 8-9 months to settle down. I nearly had it taken out due to weight gain, heaviness & lots of spotting. Now I'm glad I didn't because I'm virtually back to normal with periods every 31 days as opposed to every 20 days like before. Stick with it. I'm glad I did.

gc1990 profile image
gc1990 in reply tomollymarie71

Did the weight start to come back off of or has it stayed at least the pain has gone! I'm currently feeling more cramping than before since its been fitted!! I'm giving it until 6 months I think! Xxr

mollymarie71 profile image
mollymarie71 in reply togc1990

Hi. The weight has gradually come off.

Try & give it 8 months. I'm glad I did. Your body takes a while to adjust to the changes.

shannonnel profile image
shannonnel

Hi, I had the coil fitted under anaesthetic last August as I'm only 19. Straight away I almost wished I'd never got it fitted! I was told that it would help to ease the pain of endo (even though I've not yet had a laparoscopy nor even been properly diagnosed with endo yet) and its made everything so much worse!

I've gained a stone since December and I'm so funny about my weight, it's a really touchy subject for me too! I'm only 5ft so going from 8st 4lb to 9st 5lb is even more noticeable! Also I suffer from acne (it was maintained by dianette for years) and I've had my worst acne flare ups to date since having the coil fitted. I suffer really bad mood swings now and constant bleeding and the pain is still there!

Honestly, I was feeling exactly the way you are almost as soon as I got it in but my doctor was adamant that I needed to let it settle in for atleast 6 months, then atleast 8 months and now a year.... I wish I hadve just had it removed months ago! You know your own body so go by what you think. Mine personally hasn't settled down and I'm waiting to get it removed! Unfortunately I have to wait even longer to be put to sleep to get it removed as it was horrific getting it fitted!

Yasmin didn't work for me but then again, I was only 14 when I was on it. The only pill to date that's ever helped me with irregular periods/heavy and extremely painful periods is dianette!

Hopefully yours does settle down soon as I know just how horrible it is feeling the way you do at the minute! Good luck xx

gc1990 profile image
gc1990 in reply toshannonnel

Ahh thank you this is so helpful at least I'm not alone yeah the weight for me is massive becUse is shortie too even couple pounds difference is so noticeable because!! I'm I'm go try to 6 months no changes its coming out! Hope they take it out of you soon keep pushing them they can't make you have something you don't want! I might look into dianette :) xx

shannonnel profile image
shannonnel in reply togc1990

Aw glad its helped! Yes even wait until the 6 month mark, if there's no changes by then I'd definitely recommend getting it out as I've had mine in a year next month and nothing's changed at all sadly! Weight gain is probably the main reason I decided to get it out if I'm honest, 100% understand where you're coming from with being a shorty and it being extremely noticeable lol. Hopefully it starts agreeing with you, good luck for the future!xx

Handav27 profile image
Handav27

I've been put on zoladex. The side effects are extreme but it stops your period completely. So my endo pain is barley noticeable at the moment. Sometimes after a busy day my pelvis will hurt but it's much better that before. Ask your doctor about it but be aware the side effects are a nightmare. I have hot flushes, insomnia, headaches and gastro disturbances.

kyla78 profile image
kyla78

You can only try things and see if they work for you! Ive had the mirena 4 and a half years now it's been great but it took ten months to settle down but that's just my experience.

beckettj profile image
beckettj

There are alternatives. I'm on notethisterone ..fine ..no periods .refused coil. Look at Endo diet or at least cutting inflammatory foods ,and get to a nutritionist / herbalist who can advise on things like magnesium , fish oils , flaxseed supplementation a neck got a herbal mix which really helped settle pain. mirena only works for some. Keep trying until you get right thing.

Starstellar7 profile image
Starstellar7

I was on Yasmin for a long time too and it did work as I tri-cycled but the endo was still getting worse just gradually.

More recently I have been on visanne is is progesterone only, it stopped my periods but I didn't feel happy on it and gained weight. You could try it and see if it suits you, you should know after about three or four months. Yasmin still has synthetic oestrogen in it and there are a lot of other pills out there with less. I tried so many in my twenties and Yasmin was the only one that seemed to settle it down.

Good luck with it.

Starstellar7 profile image
Starstellar7

I'm now cutting out all gluten, reducing sugar, meat, caffeine etc. when I did this before it really helped my weight.

I think us endo ladies might get a bit insulin resistant if we eat the wrong things and this is made worse by our hormones being out of whack so we gain weight if we eat too much of the wrong stuff.

I hope you resolve it. I've never been on the coil and I don't think I want to! Best wishes.

Emilina29 profile image
Emilina29

i tried every pill in the book and none helped. they gave me headaches or made my periods worse. Some made me bleed for 3 weeks at a time. Implant and injection were rejected as i have anxiety and they can make it worse. So tried the mirena for period control. Went into cervical shock on insertion but a week afterwards it settled down. Was fine for 4 months but then started to put on weight and have constant pain. After 3 months of pain and weight gain (3stone!!!!!), doctors refused to remove it. I said that if they didnt I'd rip it out so they reluctantly removed it. I went for 6 months with no intervention to let hormones go back down to normal. Then I went on yasmin. Seems to have helped so far. Had headaches and nausea for first week and the first break gave me really bad headaches but I persevered and seem to have a reliable method now

They suspect endo for me and it has reduced the pain and bleeding for me. Although when i dont take it properly (same time every day), it hits back with vengeance lol

Good luck xx

islagrace2012 profile image
islagrace2012

Stick with the coil a bit longer coz it's helped me. I'm going in for another lap next month coz it still hurts me when I have intercurrent so I'll see what happens after that

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