Mirena coil ... keep or remove?

[Anav8]

Hi girls!

I had a laparoscopy for removal of Stage 4 endo last year in September and the gynaecologist recommended me to get the Mirena coil as a way to prevent endo from returning. He made a strong case for it being the best way to make sure endo is kept under control, so I followed his recommendation and got it inserted at the end of the laparoscopy.

The first 3 months I had almost constant bleed and strong lower back pain. I got slightly concerned and went to see the doctor, they reassured me after they did an ultrasound that it was normal and part of the body getting used to it. I asked if it would be ok to get it removed as it did not feel completely right for me (to be honest I felt like I had more pain after the surgery and the Mirena than I had before). They recommended me not to, as they strongly believe it is the way to ensure endo does not come back. I felt kind of guilty for considering having it removed against their initial advice and decided to keep it.

However time has passed, it is over a year now and I still have symptoms which I did not have before the Mirena. Every two weeks I get a very light period (more like spotting) that lasts around 6 days, is very dark in colour (almost dark brown, sorry TMI). I have very intense PMS symptoms in the days before I get it (very bad leg pain, hip pain, strong headaches in the left side of my head) and the worst one, extremely awful jaw pain.

My jaw feels like I am way too stressed and I cannot avoid grinding my teeth, this ultimately makes my neck quite stiff and I get strong shoulder pain too. The jaw pain is only worse before I get the period or in the days in which I also feel bad hip and leg pain, so I am fairly sure that it is due to endo, and I am highly suspicious about it being caused by the Mirena.

I have tried to find information online and could not find much, but I have seen that in some cases other women have also experienced jaw pain due to the Mirena. I was wondering if any of you have had the same?

I constantly wonder whether it would be the right decision to have the Mirena removed as I feel that I am worse since I have it. But then I feel very guilty and doubtful because the doctors made a good case for it being THE way to stop endo and I would not want endo to return. On the other hand I feel like the Mirena may be causing some harm to my body of which I am not even aware of...all quite scary thoughts to be honest.

Sorry for the long text, I am struggling to make a decision and would love to hear of any of you who have experienced similar things. Thanks a lot and best wishes

[Afrohair]

Did you get it removed?it really is your choice despite what they say you know your body and can look at other options sorry you didn’t get a reply earlier x

[CFin]

Hi Anav8, I found your post, I realise it’s posted a long while ago and you’ve likely moved on, and I really hope you’ve found a place of relief for your symptoms. Your post resonated with me so I wanted to share! I also felt pressured by doctors, multiple doctors, to have Mirena, and also felt guilty for resisting having it, I felt like I was looking a gift horse in the mouth and rejecting the supposed panacea for all things gynaecological that Mirena is said to be. (I know a lot of women have excellent experiences of it, but not everyone! But those who don’t, go through hell!)

I eventually gave in and had it put in, tried to push through the 6 months bedding in time, in bad pain all the time, (it affected my entire life, reducing my productivity, I lost my job to redundancy). I gave up persevering after 4 months and had it removed. The gynae and nurse both were still asking was I sure and looking at me in bewilderment just before it was to be removed! I felt an immediate sense of relief, like a lightness in my belly! I felt no tug or anything when it was pulled out, I didn’t think it was even attached!

Anyway I still had ongoing symptoms so I went back. The same gynae proposed uterine ablation and needed to perform a hysteroscopy to check suitability of my uterus for ablation. Lo and behold he found it wasn’t, because he found it was heart shaped! So no ablation.

But… Mirena (as the same gynae had explained to me!) needs to hold onto the uterus walls to stay in place, and if heart shaped, it wouldn’t have been able to. So that’s why Mirena failed for me. It confirmed that it hadn’t been attached as I had suspected the months before!

The gynae said nothing to me about it being the reason it failed, and even when I pointed it out, he tried to downplay it saying it was only a slight heart shaping. He should have spotted it before he inserted the mirena! I felt totally gaslighted by him. He also refused to consider laparoscopy unless I dropped my BMI by about 6 points. He suggested referring me to another gynaecologist’s care, which I jumped at as my next step was going to be to ask for a second opinion.

So, I just wanted to say…don’t doubt yourself, medical professionals are not perfect and don’t know everything all the time despite thinking and behaving like they do, and if you’re in pain don’t let anyone tell you you’re not!