Endometriosis advice !!

[Ellie445]

Hi everyone,

I have been diagnosed with stage 4 endometriosis and I have had the surgery to get it lasered off however that has not worked… I am still in extreme pain and I have heavy irregular periods. I am currently on the implant however my doctor suggested I have the Mirena IUD coil and I was wondering if anyone has experience with the Mirena and has any advice on whether this is a good idea!? Please any advice is appreciated

thank you

[OlgaSz]

I am so sorry you have to go through it all.

Reading this forum for almost a year the success of Mirena coil is a lottery. Some have good experiences and some give us horror stories. I was in constant pain and constant period while on the pill, so I stopped taking it and refused the coil. My symptoms improved significantly, as my periods became more regular and they didn't last for weeks and months.

To improve my other symptoms I did all the lifestyle changes I could (that were confirmed by clinical trials). I eat only whole food plant based diet, removed caffeine, alcohol, gluten, processed food. Replaced all household cleaning products and cosmetics with the ones without endocrine disruptors, removed all scented candles and air fresheners. Started doing 30 minutes of yoga everyday. I also added to my daily routine things that are reducing inflammation, like decaf green tea with powdered ginger, camomile tea, raspberry leaf tea, yarrow, cramp bark tea and so on.

For my occasional bad days I currently only use my TENS machine. I am completely pills free and I feel better than ever before. My symptoms mostly last for 0.5-1 day a month, just before period. Apart from that I am as good as new. The above turned out to be more effective than any pills my doctors put me on. I hope this helps!

[Lindle]

When you say you have had the surgery was this thorough excision in a specialist endo centre ? Although laser is commonly used for excision it can also be used for ablation which is not effective for stage 4. Also mirena will only help with periods (potentially), it doesn’t treat endo.

[ChicaPixie]

Hello lovely, I'm so sorry you're going through this too.

I have a mirena and have had it since my surgery in November last year. From my personal experience it's been ok, though as one of the replies you got I agree it tends to be a very individual thing. For some it works and for others it just isn't good.

My experience has been mostly ok, though I can only write about a few months as then I started the Zoladex therapy. I've had some bleeding initially for about 3 months, but it wasn't anything like I used to get ( previously my period was very heavy and irregular). After 3 months it seems to have calmed down a lot. I am experiencing a lot of symptoms but most likely these are due to my Zoladex therapy. So based on my personal experience I would recommend it, though again as pointed out in one of the responses you got, it isn't a cure. It is just something that may help you a bit.

When I was asked about mirena I was hesitant but at that point I thought I can try and if it didn't work I could always get it removed, even if it would mean some pain. That is just how I approached it.

Are you able to speak to your gyne specialist to talk through your concerns too? I'm not sure how easy that is for you.

I hope you're symptoms will improve and I'm sending you lots of strength, I know from my day to day this disease is horrible and I'm sorry you're suffering too xx