Mirena coil moved, strings missing, possible surgery needed to remove.

[Lily1986]

I suffer with stage 4 endo which continues to return despite a number of surgeries including two excision with endo specialist.

My last major surgery I was told they’d be inserting mirena coil, I didn’t want it and told them that but they insisted it was pretty much the “only way to keep it under control”. It hasn’t worked as an mri confirmed it has returned.

I’ve gained 4 stone in weight and the mirena has done nothing to help my daily pain except reduce bleeding a bit.

Yesterday I went to have it removed but they couldn’t do it as they couldn’t find the strings.

It was excruciatingly painful.

I’ve got to go back for a scan on Monday and if it can’t be reached I will need surgery to remove it.

More surgery for me will likely damage my nerves even more and create more scar tissue.

My consultant had previously said there was only surgery option left which was hysterectomy and removal of remaining ovary and likely colostomy bag.

Discovered yesterday my endo specialist has left uk to work abroad so unsure who I even contact now about my case.

I’m beyond furious about this as I’ve asked three times if mirena is in the correct position and was told yes each time.

Even though when I got a glimpse of my latest mri images I did think to myself “The mirena looks way too high up and too close to my spine”.

Has this happened to anyone else? What was your experience?

Best wishes to everyone xxx

[Moon_maiden]

I never had the coil, but hope they can remove yours without surgery.I’d get a copy of your records to make sure they miss nothing if they have to operate.

Have you looked up the consultants to see who could be the endo specialist?

[FazzyB]

@lily1986 hello,I'm sorry to hear what you are going through at the moment.

I have had the same issue last year

The scan showed it had moved from the correct position.

I was seen very quickly my local gyne and they managed to give me 2 pain relief injections down below while the doctor removed the mirena coil, did an internal biopsy, and inserted a new coil this time in the correct place.

I then had a follow up scan to ensure the coil was in the correct position which this time lucky was ok.

There is no explanation why the coil moves out of place. But as we suffer from endometriosis and heavy bleeding with clots my assumption is that our internal issues cause the coil to move. Where as on a women without endometriosis this is very unlikely to happen but it still does.

I understand about the weight gain as I have experienced the same issue, however my periods now are very controlled and I just experiance spotting over a 8 to 10 day cycle.

I hope you will not require surgery and hopefully it will be ok.

As for your endro consultant don't worry as they work with a team of specialists and you will be seen by one of the team members. Use your normal contact numbers and proceed from there.

Don't forget for the coil issue you can be dealt with by your local gyne (if your consultant is not local).

All the best and I hope this has helped you in some way.

Tc

Stay safe

Be positive

Be strong