Some please help or give me advice 😔 - Endometriosis UK

Endometriosis UK

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Some please help or give me advice 😔

Rachiiee
Rachiiee

Hi All,

Some of you may remember me posting the other day about my missing coil? It has my been located out of situ and about 3 inches away from my left lung!

I am petrified to be honest and feel like the hospital are messing around with getting it sorted. Had an X-ray on Monday to confirm location and was trying from then to get an appointment with Gynae! After a lot of complaining and back and forth I have managed to get one for Monday although I’m not sure on the next steps!

I did speak to my consultant on the phone on Friday regarding the appointment and said that I will definitely need to have another laparoscopy. Although she kept referring to it as ‘elective’. I was under the impression that elective meant something that you were choosing to do as opposed to something that had to be done?

Has anybody else had this happen to them?

What were the steps to removal?

Has anyone had a bad experience of this happening?

I know this is an essay but I feel like I need to be prepared for what’s about to come. I am scared that the coil moving out of position has not only damaged anything beyond repair but allowed for my endometriosis to grow back at a rapid rate. Obviously this is me contemplating the worst.

Sorry about the essay but I do hope someone takes the time to read and give me some advice/help.

Thank you,

R xo

8 Replies

Hi,

I am sorry to hear you are going through this what a nightmare. I cant answer all your questions however your post caught my attention as I may be in a similar situation. I had a smear last week and I asked the nurse to check for my coil, because ever since my lap in jan i havent been able to feel the strings, and she couldnt see them at all so I have got to go for a scan.

Can I ask did they send you straight for an xray only in being sent for an ultrasound scan? Also did you have any symptoms?

I think generally they call all surgery that is non emergency as 'elective'. But then surely if your coil is by your lung your surgery should be classed as an emergency?

Sorry I cant be of more help but just wanted to let you know your not alone.

I hope you get it sorted soon. Xxx

Rachiiee
Rachiiee in reply to livvi_livvi

Thank you for replying!

Yes my X-ray happened straight away so had the scan couldn’t see it went for an X-ray!

I don’t necessarily know if it was symptoms of that or the coil in general but I was in excruciating pain to the point I couldn’t walk because it was that bad.

Have you had any symptoms?

xo

livvi_livvi
livvi_livvi in reply to Rachiiee

Ohh that makes sense. Well im not too sure to be honest. This is because in March I was diagnosed with chronic pelvic pain and all the doctors had said that the agonising pain which had me pretty much bed bound was a flare of the chronic pain. Its only since I saw your other post that I have thought it could be my coil.

I think the only way I will know is when I find out where it is.

Have they said when you can expect to have surgery? Or not at all?

Xxx

Rachiiee
Rachiiee in reply to livvi_livvi

yes it’s something worth looking at! Nope hopefully tomorrow they’ll tell me 🤞🏼X

Elective just means planned rather than emergency. The coil mostly works against endo because it emits a small amount of hormones, and it will still have been giving out those hormones but in your abdominal cavity rather than your womb, which could actually be better. As for damage, it is inserted into the womb through a tiny hole as it folds down rather like an umbrella, it will probably have passed through the fallopian tubes in much the same way, so probably hasn't caused any damage.

Rachiiee
Rachiiee in reply to NW248

Hopefully it has passed through! My only thing with that is apparently (this is what the docs have said) my tubes are blocked. It’s all very stressful.

xo

NW248
NW248 in reply to Rachiiee

Have they given you any clue when you'll get the operation? If they are saying that your tubes are blocked then they need to look into how it got out. It is still possible that it worked it's way out, blocked doesn't necessarily mean blocked solid. Bear in mind that they don't usually read all your notes, so someone assessing what to do about the coil hasn't necessarily read the bit that says your tubes are blocked.

Rachiiee
Rachiiee in reply to NW248

The tubes blocked thing came from my consultant after my first laparoscopy

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