Anyone experience new ovarian cysts with ... - Endometriosis UK

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Anyone experience new ovarian cysts with the Mirena coil?

BookBimbles profile image
5 Replies

Hi, just wondering if anyone has experience of developing a painful ovarian cyst, with the Mirena coil in?

I needed a trans vaginal ultrasound today, to check the location of my Mirena coil, which was placed during surgery for endometriosis. I was concerned the Mirena was causing me new increased pain from 5 weeks post op. It also caused frequent bleeding / spotting (3 periods in 6 weeks). Not sure if it also affected my mood / emotions. However I’ve never suffered with ovarian cysts in the past, and one was found today. The pain intensity is varying but needing pain relief. At its worse I need codeine (not tolerating NSAIDS) and can barely walk. I will be getting a follow up scan in due course.

Just wondering about other peoples experiences of this? How long did it go on for? Any advice on living with it?

Thanks 😊

5 Replies
Brambledoggy profile image

I had a large chocolate cyst (exact centimetres forgotten but seem to remember 4cm in diameter?) which caused me excruciating pain while on holiday in Italy. Could barely walk, passed out in Portofino and TBH it was the start of my endo journey because before then was living in ignorance and agony every month. I can’t remember exact details but I believe it had ruptured and was causing me tremendous pain. They removed it and I recovered at my parents house. Could be a coincidence your coil, maybe not. Who knows what’s going on inside hey? I’m not sure these things can be ignored or left or learned to live with. Seems like you need a second or even third opinion, from a specialist gynaecologist (easier said than done), but don’t ignore it. Ovarian cysts can twist and be serious. Sure lots of other ladies will have their own experiences with the buggers. Good luck getting some answers. Nina.

BookBimbles profile image
BookBimbles in reply to Brambledoggy

That sounds like a real traumatic experience. Its so awful all the things women go through with this disease. The cyst bursting is my absolute fear - or twisting like you say.

I’ll edit my post - you’re right I don’t mean to live with it long term! Just until the next scan to see if it’s shrinking or goes away itself. Or if it’s going to need surgery :( I’m under a specialist centre, but my brain has been a bit fried with the emotional side of things and pain. Like I’m not sure how big it is but I’ll make a list of questions. I’ve got the form to request medical notes / images etc from the surgery and now this scan.

I had the coil removed though - decided I wasn’t risking the side effects I think it was causing. But your so right - who really knows what’s going on. Thank you for sharing your story. Xx

Gill1977 profile image

I developed a 5cm cyst following being fitted with a coil. I had the coil removed after 6 torturous weeks. Once the coil was out, the cyst shrunk to less than 1cm. I was told that this was all quite common with having the coil. Xx

BookBimbles profile image
BookBimbles in reply to Gill1977

Thank you so much for sharing. I don’t feel alone in this. That’s reassuring to hear the cyst can shrink on its own. Did it go away or once it had shrunk it was no longer monitored?

I also got the coil removed. I would not recommend having it placed during surgery. Too many side effects for me at a time when I could do without it. When asked to have it before surgery, it had been so long since I’d read anything about it. I don’t think I knew the common side effects are a 1 in 10 occurrence including cysts, pain and constant bleeding. I see how if it settles that it’s worth it in the longer term for lots of women. Just not for me!

Ess1982 profile image

similar experience here. Had Mirena fitted my ovarian cyst grew in size. Admitted to hospital for infection. 4 different types of antibiotics. 3 weeks later I’m on the floor in agony. Held hostage by this disease and no help from anyone. Im at my wits end but feel hopeful reading this reply.. did your cyst shrink? If so how long did it take? I too have a 3.5cm chocolate cyst on left ovary. Trying to see if the gp will prescribe amitryptaline.. I just don’t know what else to do.

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