Anyone any experience of Endo returning a... - Endometriosis UK

Endometriosis UK

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Anyone any experience of Endo returning after having Mirena coil fitted and no period for 3 years?

Endoweary
Endoweary

Hi all, I was diagnosed with severe Endometriosis in 2010 after failed pregnancy attempts including three IUI and five IVF treatments. Had a Laparoscopy in 2010 then another in 2015 to remove lesions and on the second one also had Mirena coil fitted rather than a Hystorectomy, periods halted after six months, with just a light break through every now and then. I’m about to go in for a further investigative Laparoscopy on Thursday due to intense pain in my left flank area similar to my previous experience, but Gynaecologist has said that Endo can’t return if I’m not having periods. Anyone else had a return of their Endo with no periods, is it possible or may even some left behind last time which is now playing up? Thanks for any insights you may have.

12 Replies
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Ive been on the mierna coil since 2015, and was on mini pill before and i still have endometriosis even tho im not having my periods, pain is still excruciating but its possible i have had it many years and as time went by the pain just became more frequent and noticeable there was something wrong cause of not having periods. My gyno said that its possible the nerves where endo is can be scarred and even once its been removed you can still feel pain due to this.

Endoweary
Endoweary in reply to Sameerap

Oh gosh that’s a horrible thought about the nerves still sensing the pain because of previous scarring!

Sameerap
Sameerap in reply to Endoweary

Yeh its possible cause my gyno said once he removes the rest i may still feel the pain, and suggested nerve blockers if i still have pain, worth talking to yours about it

I’ve only had the coil since December 2017, after the initial settling period I now only have very brief and light bleeds. However I still get pain, it just is slightly less, and more manageable than before

I’ve heard on here of people also having implant at same time as coil! Maybe something to ask your gynaecologist

Endoweary
Endoweary in reply to Hansen82

Thanks xx

Hey,

The short answer to your question is yes your endo can still be there or get worse without periods.

I have been on the coil and prostap (with HRT) since 2015 I had another lap in Jan 2018 and my endo had grown back even on all of those. My gynae said for me its a balancing act between preserving my bones and stopping the endo growing.

Can I ask are you under a general gynae or a bsge?? If you are under just a normal gynae I would ask to be referred to a bsge for treatment.

Xxx

Hobbits
Hobbits in reply to livvi_livvi

What’s a bsge?

livvi_livvi
livvi_livvi in reply to Hobbits

Its a specialist gynae that is skilled at surgery and is an endo specialist team.

You can look up a centre near you on bsge.org.uk.

It might be worth a look if you are experiencing reoccurring pains.

Xxx

Hobbits
Hobbits in reply to livvi_livvi

Thank you!

Many thanks, that’s really helpful.

Hi there, it’s just a normal Gynaecologist I’m going to. I’m in on Thursday. Xx

It might beneficial to look and see if you have an endo centre near you. If so I would ask your gynae to refer you there for a second opinion.

Xxx

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