Has anyone had success with Mirena coil e... - Endometriosis UK

Endometriosis UK

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Has anyone had success with Mirena coil even though cerazette didn’t stop their bleeding?

FiTee profile image

Hi. This is my first post. I am 44 and being treated by Consultant for suspected endometriosis (as haven’t had lap to confirm diagnosis). I have had many symptoms for many years which have been put down to bad periods, IBS and possible fibromyalgia, but all of which I now think may be due to endometriosis (and possibly diaphragmatic Endo too). My consultant wants to ease my symptoms by trying to stop my periods so I am now on my 5th pack of cerazette, which I think has helped my overall condition to some degree but which certainly hasn’t stopped the bleeding! I have generally bled at least half of each moth and quite erratically - sometimes light and sometimes horrendous flooding without much warning - not very helpful when I work on a closed landfill site with a loo across the other side of the car park that all the blokes regularly use too! I still get many of my other symptoms too, but generally before during and after the bleeding and feel significantly better when I have had an occasional longer spell free from bleeding (so I think I am better on Progesterone than off it). I have my next appointment on Wednesday, but my consultant said previously that the next step would be to try the Mirena coil if cerazette didn’t work. I have to be honest that I have quite a few reservations about this having done some research, but obviously want to try it if there’s a good chance it might work. Has anyone out there who hasn’t had success with cerazette gone on to have a good experience of the mirena please? Many thanks for your time and advice 😊

11 Replies

Heya, I haven't had the mirena coil fitted as of yet. But, I just wanted to say I was am in the same position as you. Got put on cerazette after having a lap to confirm endometriosis. Cerazette has actually not stopped my ovulation, which is feeding the endo, leading all my symtoms to come back and has made me bleed for half the month as well. I totally get how you feel. I am having the mirena coil fitted on Wednesday as I felt like the benefits out weighed the cons and my only other options were to keep bleeding or put myself though temporary menopause with hormone replacement therapy etc. I'm sure others will tell you there experiences! But, i'll let you know :)

FiTee profile image
FiTee in reply to travelbug1997

Thanks for sharing Travelbug. It can be really challenging to know which option to choose when nothing’s guaranteed can’t it? I suspect I will make the same decision as you - as long as there’s some chance that it can make a real difference, then I guess it’s worth trying and at least if it doesn’t work then it’s ruled out. I think I will just ask for reassurance that if I’m really not happy with it then I can have it removed quickly and won’t have to beg for months.

Really hope all goes smoothly for you on Wednesday and that you are one of those who really benefit from the Mirena - please keep me posted with how you get on 😊

Hello, I’ve had the mirena in for over a year now and it’s stopped periods but not pain. The last two months I’ve had abit of pink/brown discharge and I think it’s my body trying to start again and also my pain has increased. I have my laparoscopy on Friday so hopefully will know from there! Lots of horror stories for mirena out there that almost put me off but I’m glad I did it and I will have it in again. It effects people very differently. I have had the cooper coil out before and getting them out is pretty painless if you need to. Good luck xx

FiTee profile image
FiTee in reply to emmaquinny

Thanks for sharing your experience emmaquinny and for the reassurance that coil removal isn’t painful 😊 I’m sorry to hear that it hasn’t had more impact on your pain however - really hope that the surgeon is able to remove whatever may be the cause during your laparoscopy and that you feel much better afterwards. Please let me know how you get on. Did you have the coil put in whilst they were doing a laparoscopy initially? xx

emmaquinny profile image
emmaquinny in reply to FiTee

No, I got it put in at my drs surgery and I’m not going to lie it was not as painless as coming out, but over quickly, just a lot of cramping for me after but not everyone has that. They are going to replace it for me while I’m under so they can do a hysteroscopy at the same time as well. I will post how it goes- nervous now but I can’t wait for answers and feeling better! X

FiTee profile image
FiTee in reply to emmaquinny

Thanks for sharing that emmaquinny, that's reassuring to know. I'm still pleased that you are having yours replaced while you're under and really hope that the procedures on Friday provide you with answers and improved health. Please keep me posted x

Hey, I was put on cerazette after my first lap where I was diagnosed... I ended up bleeding 18 weeks every day one thing to say was I was pretty exhausted and poorly.

I then came off it and was asked to try it again. 13 weeks of non stop bleeding.

I was hesitant when any other Gynae or doctor suggested mirena coil with it being progesterone only and knowing how much I bleed so I refused it for the past 2 laparoscopy and the past 3.5 years! My recent lap I had no other treatment option really it was mirena or the injections so I chose mirena.

My Gynae explained to me that although I bled heavily on cerazette the mirena is inside your uterus. Takin cerazette it affects your whole body before it gets to where it only needs to be. And it can work well in women who bleed on progesterone only pills.

Iv had mine in now for 3 weeks tomorrow and iv only had spotting and discharge and cramping which are all normal. I hope this isn’t the calm before the storm. So far so good!

I was also scared by the horror stories and the mirena... but we are all different! I’m just trying to not research it and stories now it’s in and go off my own body and how I’m feeling x x

Thanks so much Glitter and Sparkle - hearing that someone has experienced success with the mirena after cerazette disasters is hugely encouraging! It certainly sounds like it is working much better for you (although I know it is still early days) and long may that continue!! xx

Hi sorry no it didn't stop my bleeding but everyone is different it did help my pain lots. I have had the gonadatrophin analogue jab and I am still bleeding so maybe its me !!!

I am in my 40's and my consultant felt that it was too risky to leave me on the pill. I think the risks were heat disease related.

I can totally sympathise to all the bleeding situations I have lost blood through clothes and I have been stuck in the work bathroom !! I have used transexamic acid when it has been bad. Good luck and really hope it helps you xx

How absolutely gutting! Really hope they manage to find something that works for you. I’ve used tranexamic acid too, before I tried HRT and then cerazette, but although it lightened my flow, it seemed to extend the length of my period significantly - if seems that every treatment has a downside unfortunately 🙁 Pleased to hear the mirena has at least reduced your pain though. How long have you had the coil if you don’t mind me asking? X

I had the coil in for 2 years it became displaced but I don't think that's common. It is good to have coil checks I never got to grips with that !! you can check the strings are in the right position.

I am 45 years old and my consultant wants to manage me until I get to the menopause. I agree they need to do more research and get better endo treatments. I have complex stage 4 endo so my situation may be very different to yours. Better treatments with fewer wide effects. Good Luck x

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