mirena coil advice: hey ladies, just... - Endometriosis UK

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mirena coil advice

Kieraface profile image
22 Replies

hey ladies,

just wanted to know what your experience has been like with the mirena coil. My gyny wants to fit one when I have my surgery and I’m not sure I want it. He said it should control my adenomyosis and help with the endo too - as well as reduce bleeding but I’ve read horror stories and I’m now concerned about having it and debating not getting it with my surgery:

my gp said I’m high risk having it fitted so would be better while I’m under a general to have it fitted then but I’m just a little reluctant and was wondering what peoples experiences with it were.

Thanks in advance xx

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Kieraface profile image
Kieraface
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22 Replies
1Poppy1234 profile image
1Poppy1234

I am now on my fifth mirena and have had no problems with it I still bleed but it's light and if it's fitted under surgery no pain and if it has to come out it's not painful at all. It's worth a go. Most people find it works with heavy bleeding.

Kieraface profile image
Kieraface in reply to 1Poppy1234

Yeah I might try it. I was just so unsure but as you say if it won’t hurt to fit during surgery and it’s not painful coming out I may as well try it. Thank you 😊

Bing73 profile image
Bing73

Best thing I ever did for my adenomyosis- I had a mirena inserted without anaesthetic but done by a gynaecology consultant as I have a double woom and they’re both retroverted - a little discomfort for about 5 minutes (but that was more getting the speculum in situ) and then a slight pinch and it was done. I now have a very light bleed every other month rather than 7 days of heavy debilitating bleeding every 28 days.

Kieraface profile image
Kieraface in reply to Bing73

I would take 7 bad days a month tbf. My last period was 90 days of super heavy bleeding it was awful! Currently on norethisterone to control it until my surgery. Thanks for sharing! Really great hearing about how it helps with the adenomyosis too!

Bing73 profile image
Bing73 in reply to Kieraface

So sorry to hear about your issues 😢 I hope you get some improvement soon. I read some horror stories about the coil and it made me a little reluctant to proceed but I guess you need to balance those against the 1000’s of women who have it with no or few issues. It’s been a life changer for me and I hope it is for you - best of luck

Kieraface profile image
Kieraface in reply to Bing73

That was my fear! I’ve had such a nightmare and the coil can go either way. I just wanted to hear others experiences on here as I think they maybe more valid based on shared medical histories

MonieBL profile image
MonieBL

hey Kieraface! I had a coil fitted for the first time 6 weeks ago. Initially it made the bleeding and pain worse. I’ve just had my second period since having it fitted and I must admit it did feel lighter and the pain less excruciating, they say to give it 3/4 months to settle in so I’m hoping it’ll get even better but I have already seen some slight improvement. It unfortunately has made my bowel symptoms worse like constipation and bloating around the time of my period and I’ve gained weight. It’s all weighing up the pros and cons i suppose but we’re all different and don’t know what to fully expect until we try it ourselves 🙈 I told myself I’ll give it 6 months and if no improvement, I’ll get it taken out. I hope this helps? xxx

Kieraface profile image
Kieraface in reply to MonieBL

Thank you so much monieBL, definitely helpful getting others experiences! Xxx

Sunset-lady profile image
Sunset-lady

They tried to fit me with a coil during surgery but they couldn't get it to sit in my cervix. My friends have them and they love it. I have fibroids and endometriosis and I flood daily so if you can get it, I would go for it. It's life changing when you are bleeding so heavily. Being anaemic is awful. Good luck.

Kieraface profile image
Kieraface in reply to Sunset-lady

not only am I anaemic but I also have pernicious anaemia so have to have b12 injections every 3 months so heavy bleeds leave me beyond exhausted. Thanks for the advice. I think it’s worth a go. Sorry you can’t have it :( and sorry to hear about your bleeding. I hope they find some way to control it for you x

Sunset-lady profile image
Sunset-lady in reply to Kieraface

Then it could be life changing. It's not irreversible either. If you don't like it they can remove it. Having iron transfusions is no fun and this will give your body a break.

persil profile image
persil

For me personally it gave me back 7 years of my life back i also asked for top up mini pill. Definitely worth a try. good luck

JulesUK profile image
JulesUK

I know it doesn’t work for everyone but for me it was the best decision I have ever made. Went from rock bottom to having my life back. I’m now on my third. I have only have ever had them inserted/changed whilst under anaesthetic though and I’m not sure I would want it any other way given that I find even smear tests difficult. I hope it works for you too.

Kieraface profile image
Kieraface in reply to JulesUK

Thanks jules! I think with so many women here coming back with positives it’s definitely worth a try to see if I can get some semblance of a normal life again!

Fizzypoptastic profile image
Fizzypoptastic

Hi there, I suffer from stage 4 endo & adeno. I was fitted with my first Mirena in Feb 2022 & it has been the best decision of my life. It took 4 months to settle but has given me my life back. I didn’t have a local anaesthetic the first time around so I would suggest you go for that, especially if you have a retroverted uterus like me.

I do have side effects like headaches when it’s my time of the month however it’s a small price to pay.

Good luck with whatever you decide to do. Xx

Kieraface profile image
Kieraface in reply to Fizzypoptastic

I think I’m just gonna try it out and they can do it while I’m under the general. Got my surgery in 2 weeks and 2 days time. 6th October can’t come quick enough. Has it really helped with the pain and the bleeding? Xx

Fizzypoptastic profile image
Fizzypoptastic

Yes, it helped 100% with the pain & bleeding. I had stabbing pains in my abdomen, vagina & rectum before the op & Mirena. My bleeding was awful too, I was anaemic as a result. Now I just spot for a week or so, which I don’t mind at all.

Excited for your op, especially if you’ve waited over a year like I did.

Make sure you get some laxatives so you’re not straining after the op. xx

Kieraface profile image
Kieraface in reply to Fizzypoptastic

My doctor has given me movicol already as the kink in my bowel makes it difficult to go :(

I’ve only had to wait a few weeks for the surgery from diagnosis as I went private. Nhs gaslit me for the best part of 14 years and told me i only had bleeding issues because of my contraception xx

Fizzypoptastic profile image
Fizzypoptastic

14 years? That’s a long time to wait.

Bet you can’t wait now. Good luck xx

Cocoacupid profile image
Cocoacupid

I have a mirena coil as had a retroverted womb have always had coils fitted in the hospital rather than doctors as very painful for me. I had one coil fitted in my late twenty’s and then this one four years ago. I found the coil ok but until I had my lap this year back in. April was still bleeding with it. Since April no period as such. Been told by my consultants team to carry on with the coil. But it also depends how old you are. I wouldn’t recommend you have one if you want a family as sometimes coils can get embedded or lost. This happened to my sister. Me the first coil fell out. I would think long and hard though. It has improved me period wise as was getting extremely heavy monthly’s and not able to walk. The coil has lessened the bleeding as would still get break through since the endometriosis cyst removal no more breakthrough bleeding. But I will tell you I still get severe period cramps and ovaltion pain so even though now bleeding is just from my bottom now only. Is still get really bad pain and last week I really thought I was gonna come on. This pain I get some days still can’t walk. And that’s with out having a period as such. Just ask them for all options maybe try different pills first I did but I felt with the pills I was just as in as much pain as not taking it. Also he pain for the first day after getting it fitted was immense.

Kieraface profile image
Kieraface in reply to Cocoacupid

Thank you for sharing your experience. I really appreciate it. I’m sorry it sounds like you have had it tough. I hope things improve for you

Cocoacupid profile image
Cocoacupid in reply to Kieraface

Thank you sweetheart x

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