mirena coil help

[Sapphire2021]

Hi,

I have been diagnosed with stage 4 endo through a lap last year. I was fine until a couple of months ago and now the pain is back for 2 solid weeks out of every month.

My surgeon is reluctant to perform a hysterectomy because he said i have too much scaring and the risks are extremely high. He suggested the mirena coil.

I have had this previously (about 9 years ago) my mood was so low but the drs said it wasnt to do with the coil. I had to really argue to have it removed.

Since this is the only option my surgeon has given me i am very worried about having it again. Did anyone else have low mood with the Mirena?

Is there anything else i can try that i dont know about? Or is this really my only option?

Thank you

[claudia_91 Moderator Endometriosis UK]

Hi Sapphire2021

It's nice to hear from you. Sorry that the pain has returned for you since your lap last year, that must feel really disappointing. It's great that your surgeon is offering you mirena coil as treatment. However, remember that you know your body best and you always have a choice in the care that you receive. If the mirena did not help you previously, it's something to bear in mind, and it's totally your choice.

There are other medications and treatments available that help to treat endo (apart from the gold standard excision surgery). Endometriosis UK have a fantastic resource on their website which contains information about the different types of treatment, which is on this page: endometriosis-uk.org/endome...

It might be worth having a read and discussing with your consultant.

Hope it's useful and you can find a treatment that works for you 😊

Take care,

Claudia

[Sapphire2021 in reply to claudia_91]

Thank you. I will have a read 😊

[Lindle]

Hi - what country of the UK are you in as treatment guidance varies slightly according to location.

[Sapphire2021 in reply to Lindle]

Im in England 😊

[Lindle in reply to Sapphire2021]

Was your lap in a specialist endo centre and do you know if it was purely diagnostic or did you have excision? Had you had a scan prior or since?

[Sapphire2021 in reply to Lindle]

It was at my local hospital but my consultant specialises in endometriosis. Not sure if that's the same thing? I havent ever heard of a specialist center near me. I had alot of scans plus mri's prior to surgery because i also had a very large endometrioma.

During surgery they removed that, another cyst, half of my left ovary and exercised endo from all over my pelvic area where they could get to. They could only remove half of the ovary due to it being so adhered to my bowels and no bowel surgeon present.

[Lindle in reply to Sapphire2021]

Sometimes it's hard to know if you are in a specialist endo centre as they are located in normal hospitals but it is tertiary care as opposed to secondary - so a step up for what are classed as highly specialised conditions, which severe endo is. Could you D M me your surgeon's name to check.

[Narcica]

Hi,I am in the same position. I’ve had my last surgery in 2019,February and had a Mirena inserted. Around 2 months later gradually every symptoms came back. They don’t perform the hysterectomy either. I have stage 4 for years now. Then the pandemic came and everything was delayed. They put me on Decapeptyl last year combined with estrogen gel. It helped me until like this yeah April or so, since then my bones are in terrible pain whenever I receive it. Especially in my spine where I have osteopenia. If you don’t have a bone condition this might be a good option for you. For me; I definitely cannot take the 3 monthly injection anymore. It’s tough!! I hope you’ll have some relief soon x

[Lindle in reply to Narcica]

Was your treatment in a specialist endo centre?

[Sapphire2021 in reply to Narcica]

Its so tough isnt it. Sorry to hear you are going through it all as well. I dont have any other issues thankfully other than all of this. I do have an appointment with my gp tomorrow but i like to know my options before i walk in there. I will mention this to her and see. Thank you for replying. I hope things get better for you soon x