Has anyone else switched to Kyleena from Mirena and had Endo symptoms return? + migraines?

[MillShen]

My "suspected" Endo symptoms were treated quite successfully with Mirena for 5 years, then switched to Kyleena in 2019 - I only just today realised/remembered that this switch had happened when I came across the little card they give you at the appointment! Not normally something I would forget, but I definitely have PTSD related to the painful experience of the fitting of my original Mirena coil so I was probably not really taking in what they were saying to me.

I cant say for sure exactly when the pain started to come back, its definitely been at least a year, but I had such a horrible experience with it throughout my teens that I've been in denial hoping it would settle down again - It hasn't, and I have given in and been to my doctor recently, they sent for a smear test and an ultrasound which I get the results for tomorrow.

I have also been getting Migraines which I am certain must be hormone related because they tend to happen just before my period and sometimes around ovulation. Thats been going on for 6 months or longer.

Anyway - has anyone else been switched from Mirena to Kyleena and had symptoms come back / worsen because of it?

Apparently Kyleena has a lower dose of the hormone Levonorgestrel than Mirena, perhaps this might be the reason?

Millie. Age 27, Based in Manchester

Treatment: Mirena from 2014-19, Kyleena 2019-present

[meg73]

Hi Millie,

I had a similar situation, but actually switched from the copper coil (which I was just taking for birth control) to the Kyleena coil. I wanted something lower hormone and didn't quite realise that it wouldn't have the same positive impact on endo. My symptoms really did ease massively with Kyleena with less bleeding and excrutiating pain but the background pain and bloating and aches are still so prominent. At my gynae appointment a couple weeks ago, the doctor told me that the Kyleena likely wasn't doing enough for me and a switch to Mirena could just be the extra bit of hormones I need to feel better.

Like you, I had a terrible experience with insertion and really can't bear the thought of having another coil put in. My plan at the moment is to have my coil removed entirely and get a sense of what my baseline is. If it's horrendous, I am going to have the mirena inserted during my laparoscopy so I'll be under GA. Otherwise, I think I'll try a little while with trying to manage things more naturally because I do have a bit of a feeing that the coil itself may be causing me some inflammation and pain - the doctor had alluded to this as well!

Sorry this doesn't help too much but just thought I would share my thought process.

[MillShen in reply to meg73]

Hi, thanks for your reply.

Apparently the ultrasound found a 5cm cyst on one of my ovaries - though my doctors theory is that it probably isn't what is causing the pain, I'm getting blood tests and being referred to Gynaecology so they can have a better look at that and my situation in general. Doctor has prescribed me Mefenamic Acid in the mean time for the period pains, which I did take when I was younger and I remember it taking the edge off a bit.

The prospect of having to have another Mirena coil fitted makes me feel a bit sick, although to be honest the exchange I had in 2019 wasn't as traumatic as I was expecting it to be after my first - still pretty horrible though.

In you case, if you don't mind me asking, have they been able to see anything on ultrasound or otherwise that has semi-confirmed that there is endometriosis present? I'm not sure if / what they should be seeing on those scans. I sometimes feel like i'm making it up and the docs don't believe me, because pain is so abstract until its actually happening and I feel like my pelvic organs are being torn apart, trying to describe it to them while they kind of sit there blankly is so frustrating.

[meg73 in reply to MillShen]

I 100% agree, and no I haven't had anything seen on scans - just many visits to doctors and feeling a bit tender and inflamed on internal exam has led multiple GPs to say 'probably endo'. It took me a little over a year to get to the point of getting a hospital appointment and now on the list for laparoscopy. My understanding is that many people do not have any signs on ultrasound at all.

I had a 2cm cyst last year but it went away on it's own. Your 5cm cyst could very well be a sign of endo (cysts are more common), however even with cysts showing on an ultrasound, it's not a definite diagnosis by any means!

I am on manafemic acid as well and just trying as much as I can to help me ease the pain.