Thickening of womb lining even after Mirena coil has been inserted

[Aydel]

Had check up by ultrasound as my coil had gone AWOL and doctors couldn’t find it. Ultrasound showed thickened endometrium (5mm) and now referred for the fourth time for another scan and hysteroscopy via two week wait. Has anyone else had this? The Mirena was supposed to keep the endometrium thin!

Can you tell us a bit more?

Were you diagnosed with hyperplasia before the Mirena?
If so, how long has the Mirena been in place?

Are you on estrogen as well?

FWIW I'd had loads of private scans and have been told by a gynae oncologist that the cut-off points of 5mm are only guidance and that it's how the endometrium looks that is most important. And that needs a very expert eye to decide.

Also, the measuring of the endometrium can be inaccurate because the difference between 4mm and 5 mm is tiny.

Also- what is happening about your lost coil????

Where is it?

Not the mirena but copper, my coil went through my uterus wall and was in my pelvis region. If you're not having the expected endometrium changes then I'd take an obvious guess it's not actually in your uterus anymore. It's either fallen out (I was surprised at this, but apparently it can somehow physically happen...) or it's stuck in your endometrium lining or even being expelled out. Mine needed surgical removal as it had perforated through my uterus and was slowly but eventually fully expelled out into my abdomen/pelvic area.

Have you had any pain or cramping or spotting?

Also it took 2-3 months for the doctors to finally diagnose where my coil was. Three ultrasounds, an X-ray, a CT scan AND an MRI. It wasn't a quick or straightforward process.

@JinglingSpringbells yes, I’ve had post menopausal bleeding three or four times, and thickened endometrium. They finally managed to get the coil in. I went back to check it was in place and they couldn’t find it. This was back last summer. I had spotting for several months after the coil was inserted, which I was told to expect. Since the spotting stopped, I’d bled a bit vaginally on the odd occasion I was constipated, which made me think the coil might be digging in somewhere.

I was told that the coil is in the right place when I had the ultrasound. Not on oestrogen or any other kind of HRT. Every biopsy has come back clear and the gynaecologist confirmed when they were up there with a camera that it all looked fine.

Thank you for your help. The timing for this could not be worse. I’ve been given a new short contract overseas and fly out for four months this weekend, although I can come back for follow up appointments as I’m only in Europe.

If the coil isn't in the right place, apparently it can't do its job properly. Also, over time the amount of progesterone it releases declines slowly. I'm going through a similar thing atm, although I'm pre-menopause so the issues may be a bit different.

I'd be wondering if you were really post menopause.
Are you over 54-ish and no period at all for a year- before the spotting?
Several episodes of bleeding when nothing has been found amiss sounds as if you still have some ovarian activity.

I was told that the coil is in the right place when I had the ultrasound.

Was that last summer? or just now?

Did your coil went AWOL almost a year ago and they've not made any attempt to find it? Sorry if I've misunderstood but was it only very recently they couldn't find it or a year ago?

@JinglingSpringbells

Last period 2018 aged 53. Had post menopausal bleeding in 2020, 2021, 2022 and 2023. Coil has been in exactly a year. Went for check up last July, doctor couldn’t find it, referred me for an ultrasound, which despite my repeatedly calling the GP has only just happened. (I got stuck in a spiral of the GP saying I had to call the hospital and book it myself and then the hospital saying I had to be referred by the GP.)

The doctor who couldn’t find it said she was reassured that it was still in place by the fact that I’d been spotting. It was the ultrasound this week where I was told it was in place and where it should be.

When I had had a hysteroscopy before, they had attempted to insert the Mirena without anaesthetic but it was too painful. The last time I was offered local anaesthetic and it worked. When I had the hysteroscopy before (following post menopausal bleeding), the endometrium was thickened but not hugely - if I had been on HRT it would have been within the normal limits - think it was 6-7 mm.

Thank you for your help.

They managed to find one ovary on this scan but not the other.

I’ve been told to lose weight, and am doing so slowly.

It's probably worth having another biopsy as this has been going on for 6 years.

You've possibly been advised to lose weight as being overweight does increase the risk of endometrial hyperplasia ( and irregular changes) as fat cells produce estrogen, post menopause, which has the same effect as unopposed additional estrogen (as in HRT without any progesterone.)

I hope it all works out and there is no need for any more intervention.

@Aydel Have you had your hysteroscopy yet? If so, did they give you any explanation for the thickened lining whilst on the Mirena?

I ask because I am in exactly the same position - have had a Mirena for approx 15 months and on 2 pumps of oestrogen. I had a few days of blood stained discharge a few weeks ago and a scan showed a lining of 6mm, so awaiting a hysteroscopy.

I am definitely post memo, but have bled on every type of HRT I have tried before I agreed to the Mirena. I also bled on and off for around 6 months when I had the Mirena inserted, and I had another random bleed back in November, following which a scan showed the lining to be 3mm. I am so fed up.

@wineoohh
I am in a similar situation as you. Waiting for a biopsy as I’ve got thickening measuring 5.6mm following spotting. I too had a mirena coil and oestrogen patch.

@wineoohh and @lissie123 sorry I’ve only just seen this. I’ve just got the biopsy results which said basically all fine and diagnosed with endometrial inflammation. No further action needed unless I get another bout of post menopausal bleeding. They inserted a new Mirena, and I’ve had no spotting at all this time.

@Aydel pleased to hear you’ve had positive outcome. I’m waiting for my biopsy results at the moment.