Bleeding with the Mirena coil

[cabbage12]

Looking for some advice before I ring the GP tomorrow. I was diagnosed with endometriosis in may 2017 after suffering pain and other symptoms for many years. In 2019 I had a pain flare which lasted 6 months before I was started on amitriptyline and was given the Mirena coil to help my pain. I've had my Mirena coil for just over a year now. The last few months I've been having increased endo and cramping pain, and a new nipping type of internal pain. I'm on amitriptyline which is less effective now and have gone back to taking naproxen twice daily and co-codamol some nights. I've also been spotting/ light bleeding for the last month or 2 with clots and tiny bits of tissue type material. Has anyone else experienced this? Was thinking of calling the GP but have been holding off as I don't want to bother them.

[Alaine1 Administrator]

Hi,

I’m a fellow endometriosis sufferer myself so can really sympathise with you on this. For me the mirena simple didn’t work but I’m glad that on the whole you have found it effective. What I think is probably happening and is known to occur with endometriosis/adenomyosis sufferers is that it become less effective after 3 years. The mirena for contraception and other conditions is licenced for 5 years and is effective. I’m guessing it’s probably approaching the 3 year mark? So you really have a number of options.

Firstly you can ask for it to be removed and changed. Many GP practices no longer offer this service (to do with contracting out the service). So your option would be to contact a sexual health centre and ask for it to be changed. Most especially within a hospital environment that already has an endometriosis centre are very accommodating whilst others will only do it if it’s for contraception. To me and others it really shouldn’t matter on the reason. I’ve tried the implanon implant at a sexual health clinic attached to the trust where my endometriosis specialist is and they were very accommodating. If this is an option for you there are potentially two:

1) Contact the clinic and say it’s for contraception.

2) If asked say what it’s for and the sole reason is treatment you can say this and hopefully it won’t be a problem. If it is a problem you can usually look the doctors up on the webpage for the clinic and contact their secretary and ask for an appt that way. It might mean the bending of the truth slightly to my endometriosis specialist has mentioned that sexual health clinics are changing the mirena for patients. Or you could ask the centre manager or one of the nurses/doctors to contact you back for advice.

3) If all else has failed and you are still under the care of your specialist contact their secretary and tell them what has happened. They might be able to contact the sexual health clinic on your behalf.

4) Or and this is probably your best option, contact your GP surgery and explain what has happened- easier if your surgery is using an app. Hopefully they will be aware of it becoming less effective after 3 years and prescribe a progesterone tablet which is similar to the hormone in the coil. When health services start to open up more you might choose to have the mirena replaced.

I hope you find one of these options works for you and your pain and bleeding settles soon as it’s a miserable condition to have. Let us know what the outcome was for you