Endometriosis UK
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Your experiences with merina coil and endo 😄?

I had my laparoscopy on the 8th of march 2018 and they told me I have endometriosis on my left ligament on my left ovary i was then fitted with the coil after it was cut out and i was told the coil would help to keep things at bay i just wanted to hear from anyone else who is in a similar situation and how you are getting on (experiences with the coil has your endo come back? How are your symptoms?) I must mention i had to have the coil fitted as i suffer from migranes with aura so it was the safest option ☺ i really didnt want the coil but really there was not alot of other options for me i am 29 and i have suffered for years eith awful heavy painful periods also pelvic pains and upper abdo pain i just wanted to know if anyone elses symptoms have got better with time on the coil and after the lap? I would be ever so grateful to hear from anyone thankyou so much 😚 x

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Heya, I had the mirena coil, I only managed 1.5 years with it as I'm really sensitive to hormonal stuff. After several months my periods stopped which was great and my pain levels got a lot better but not to soon after I started having new pains form and my endo continued to grow. The coil is hit and miss with people, I'll say it's always best to try it out as it may be for you if not, then it's easily removed.

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Hey thanks alot for sharing your story with me ☺ i had the coil put in when i had my lap just under 3 weeks ago so thats why i just wanted to see how its worked for other people i have all my fingers crossed that it will help me im sorry it didnt work out for you, i have been ok so far but i guess its really early days for me thanks again x

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Hi Victoria,

I had the mirena coil fitted in October during my most recent lap and endo treatment. They said it could help a lot with the pain but unfortunately it hasn’t worked for me at all and to top it off I’ve bled every single day since 12th October. I’ve now started on Prostap injections to force menopause and Livial HRT and they want me to keep the coil in for the first year of this treatment to see how it goes. It’s draining when you bleed every single day but I’m going to continue to persevere and hope for the best. Everybody is different and has a different experience with Mirena but I would definitely advise you to persevere for at least a few months as it can take a long time for you body to adjust to it. Good luck 💛

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Hey thanks so much for sharing your story with me im so sorry to hear you have had bleeding every day i cant imagine how draining that it 😣i so hope things get better for you and i will defo persist with the coil i am trying to stay positive and hope things get better its just the not knowing that doesnt help things! But as i say i just wanted to hear other peoples experiences as I am new to all of this. I hope things get better for you 😊 xxx

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Hi, I had my first coil in 2003. It was tricky at first but it settled with time. I had a second lap in 2007 because my symptoms were returning. However the lap showed that the endo had actually improved. I was given another coil and have changed them every three years since then (now on my fourth). It’s helped me avoid the need for further surgery. My symptoms were well controlled until I hit the menopause last year. So I’m very glad I persisted with it, even though for the first few months my pain got worse. The good news is that I didn’t experience the same thing when it was changed - the next day I was fine.

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Thanks alot for sharing with me ☺ im glad things are a bit better for you x

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Hi Fabbird, do you mind me asking what happened once you hit the menopause? TIA

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Hi, in the early stages of menopause my symptoms got much worse. I had a very nasty month of pain when I struggled to function and began to wonder what on earth was going on. But it passed and things have improved since. I’m still technically peri-menopausal as I get the occasional, unpredictable period but hardly any pain. I’m hoping I’ve got over the worst.

From what I’ve read, our progesterone drops before oestrogen which fits with my experiences. However I’ve had to work this out myself as no doctors could offer any advice.

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Hi i had a coil fitted,only due to having come off the depo injection. The coil gave me nothing but trouble had to have it removed approx 4 months later. As people say works for some unfortunately not for others. Fingers crossed you're a lucky one.

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Thankyou for sharing your experience with me im sorry it didnt work for you x

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Hi Victoria

I'm in exactly the same boat as you - got my Mirena fitted during my lap in November due to any other hormonal medications making my migraines 10x worse in the past, and I was told Mirena was a very good option for migraine sufferers.

Though I've had LOTS of bleeding since then (think I've had a total of about 2 weeks where I haven't bled every day), it's finally now calming right down, and, aside from aforementioned bleeding, my other symptoms have dramatically reduced which is great.

Of course it's still only 4 months since I've had it fitted, so I'm in a similar position where I'm just hoping & praying that this will work for me. I feel like it's my only option, because hormonal treatments in the past have made me ill, but not having them makes the endo grow back, so a lot of the time I feel stuck between a rock and a hard place! But I'm determined to stick it out for a few more months.

Hope it all works out for you too xx

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Aww thankyou so much for replying it does sound like we are in very similar situations ☺ its just the not knowing how things will pan out that just keeps me worrying but i am just trying to stay as positive as i can 😊i really hope that things get better for you and that the coil also works out for you i have all my fingers and toes crossed for you take care 💕 xx

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