1 year post op with continuing issues

[Leanne102]

Hi all,I'm coming up to having my year post lap appointment after having an extensive surgery last March.

Bit of background: I have deep infiltrating endo which had formed on all my organs in my pelvis, my pelvis, ligaments, groin and down to my thighs. I had that removes, along with some ovarian cysts, and the Mirena coil implanted.

Firstly, has anyone had any positive experiences with the Mirena? I'm a year in and I'm not really feeling the benefits of it. I'm still experiencing pain, getting really bad painful acne, emotions are all over the place and I've been have a constant period (symptoms minus the bleeding) for a few months now. My concern is if I have it taken out is the endo going to come back really fast and am I going to be in this loop of surgeries?

Additionally, I've been developing new pain around my lower back and hips which wasn't looked into the first time because it wasn't there at the start of this journey. I've had a kidney ultrasound and they've said because that's clear they're not willing to label as endo and I'm getting anxious that they're not going to investigate further.

So I guess my overall questions are:

- how have you found life after having the coil removed and have you had a quick relapse (for want of a better word) of symptoms and growth afterwards?

- how have you found post op care, especially after that year mark, and have you been able to get further pain and symptoms investigated and taken seriously, or is it round to the gp again to start the cycle all over?

Thanks,

Leanne

[Pinkpoppy]

Hi Leanne (I’m also Leanne)

So, I have adenomyosis (endo in the muscle of the uterus) which caused very heavy bleeding. I am on my 3rd mirena as the first two expelled themselves after 6 months ish. I found between the mirenas my periods became extremely heavy with pain again within about 2 months. This current mirena has been in place now for 1 year and 4 months and after the first year my periods noticeably changed from regular light spotting to almost non existent.

I know how tricky it is particularly when you have side effects from the mirena (I also get hormonal acne)

After the first two mirenas I was really reluctant to try a third but now I’m pleased I did. I have to say it took a year almost exactly to see the real benefits though.

Have they checked the mirena is in the right position? My first two (most likely due to incorrect positioning) didn’t make a lot of difference for the period of time they were in place but the one I have in place now was positioned by the consultant when she was doing a hysteroscopy which I think made the difference.

Good luck and keep us posted.

[Leanne102 in reply to Pinkpoppy]

Hiii!Thanks for replying! Yes they have checked and it's solidly in there. It's hard isn't it, I guess everyone's going tochave slightly different reactions to it. I also had mine done while I was under for the lap which probably helped lodge it in there. I have no period since I've had it in, but all the symptoms around it, with extras. I've noticed pain slowly creeping in from where the endo was removed so I'm not really sure what to do either way.

It all feels so tricky and a bit experimental, but I've got a long list of notes to bring up with my next appointment so I'll try and get everything answered thoroughly 🤞.