Endo- Laparoscopy and Mirena Coil

[Smileymiles]

Hi, new to this group!

I had my gynaecologist appointment after years of endo symptoms and they have put me on the wait list for a laparoscopy to diagnose and remove if endo is found. The doctor urged me to have the mirena coil put in after the surgery while I’m still under GA (I have tried all other contraceptive options and had very bad experiences with all of them) but how will I know if the endo has come back if the coil is potentially masking/helping my symptoms? Will the coil make me gain weight? Will the hormones have an impact on my mental health, like they have with previous contraceptives? I went in to the appointment completely against the coil and left being told it’s my only option for pain management until I reach menopause (currently 25 years old). Please can anyone share any wisdom/ similar situations as I am not sure what to think and a bit overwhelmed!

Thank you in advance for any advice or comments xx

[Em0000]

I felt the same about the coil, but it stopped my periods and the pain has almost completely disappeared. I did have to have surgery two years later due to an endometrioma and a year on from second surgery my ovaries are stuck behind my uterus, it doesn't completely stop the endo or adhesions but it did help with the pain

[Smileymiles in reply to Em0000]

Hi Em, thanks for taking the time to reply and share your journey, this is so helpful! My concern with the coil is, how do I know if the endo comes back after my surgery if it relieves my pain… I am very hot on tracking all my symptoms so I worry I’ll miss something if that makes sense? This is all new to me since my gynae appointment two days ago so I may be overthinking of course. No worries if you have no answers or advice, I’m sure it helps to just sound these things out anyway!

[Earthmother1]

Hi, I was in the same situation as you 7 years ago. Except my gynaecologist bullied me into having the mirena coil right before I was due to have a laparoscopy, I was sitting there in my gown and she told me that if I didn't have it, it would come back, so it was up to me to make the choice. I felt her annoyance, her disappointment, I felt pressured and awkward. So I told her to do what she needed to do. When I came to, she had removed a fallopian tube, removed a cyst from my ovary and it was stuck down so she freed it, she said there was endometriosis still there as she was unable to get it all. Guess what, a month later the mirena coil dislodged and it needed to be removed as it potentially could've migrated elsewhere in my pelvic cavity! So now I felt like I was being punished for not advocating for myself and sticking to my guns. So after removal I decided to go on desogestrel, desogestrel stopped my periods, but it hasn't stopped the endo flares or the growth of endometrial tissue. After 7 years I realise that I've been living with constant low grade gnawing pain, bloating, constipation, I've had several flares that have affected my entire abdominal area. I'm convinced I have endo dotted throughout all of my abdominal area. I was diagnosed at 23 and I'm now 49. Sadly my experience has not been positive. Medical professionals still fob you off even with diagnosis. I started decapeptyl yesterday, fingers crossed it'll work. And my gynae has referred me to a specialist, but the wait lists are so long. I realise now how much endo has affected my life. Like the frog in the pot just sitting there as the heat gets turned up. So my advice is to do your research and do what you're comfortable with. There's always a trade off with endo. It's never perfect. I had a Male menopause consultant tell me that endometriosis is period related so I couldn't be having endometrial flares as I wasn't having a period! My goodness I wanted to slap him! I asked if he would refer me to an endo specialist and he refused. This is where we still are, not being listened to, being dismissed, still having to fight to see the correct specialist. And yet I saw a Male gynae consultant on Friday and he couldn't understand why I had been sent to him and not a specialist! So thankfully he's now referred me. The NHS is in a mess! I wish you good luck, but learn to advocate for yourself, and if you can, take someone with you for support.

[Rainbow2468 in reply to Earthmother1]

They can be bullies, i kept getting told to have a minera coil fitted, thankfully i refused, as it would have been pushed out, by my fibroids. I tell people now, don't be bullied or fobbed off, and don't let them push you into doing something you don't want either. Have a peaceful day 🤗

[Earthmother1 in reply to Rainbow2468]

I'm really good at advocating for other people but not for myself. For a long time I was mad at myself for allowing myself to be pushed/ bullied into doing something I didn't want to. But I was so vulnerable sat there in my gown waiting to be called into surgery only for the consultant to tower over me implying it would be my fault if I didn't have the coil. None of us ask to be in this position, yet because of our genetics we are. My heart and love goes out to every single woman dealing with this. I hope one day there will be better medical treatment for ourselves, our daughters and our grand daughters. ❤

[Rainbow2468 in reply to Earthmother1]

I agree I'm in a group fighting for better treatment for when we have hysterscopies too ❤️

[ChessJ]

I’m in a similar situation to you, as I had my first lap in November and was very anti the coil. So after my lap I was told it was all removed from my left side and was put on desogestrel to stop any further growth of it. Fast forward nearly four months the pill has not worked for me at all, so went back to my consultant who was told me she didn’t remove any from the right hand side as it was all on the tube and she didn’t want to do anything without my consent. Which is why I’m in so much pain, so she said we either try the coil or have another operation. I’m fed up of trying things and if the coil doesn’t work be another six months of pain. So heading towards another operation. I would say for you go with your gut and hopefully they won’t force you into having the coil. Hope you get some relief soon

[Smileymiles in reply to ChessJ]

Goodness so sorry to hear your struggles! I appreciate your reply!

This morning I had a call to book me in for the surgery in April which is good news- I’m leaning towards going for the coil and at least trying that as a temporary semi solution… can always take it out if I don’t get on with it! I have read such a mix of horror and success stories around the coil but hoping I’ll be one of the successes

[Whoosh451]

my first Mirena coil at 27 literally gave me my life back- I couldn’t believe it. As I’ve got older and my adenomyosis has progressed, it’s less effective at minimising the pain I get during my cycle, but I’m still grateful for it helping me to do what I can at work/socially.

What I’m trying to say is that if it gives you relief from your symptoms, that’s great. If endo does return to a point where surgery would be a helpful or necessary intervention again, my experience tells me that your body lets you know. As in, the Mirena is not so good at giving relief at that point and it’s time to get checked out again.

If you decide to give the Mirena a go, I hope it provides you with some relief and a chance to live pain/heavy bleeding free!

[Smileymiles in reply to Whoosh451]

Wow I’m so glad you had a good experience with it! Thank you for sharing, this has really helped honestly ☺️