Any Drs or gynaecologists about? Mirena coil and fatigue question

[GettingABitDesperateNow]

Hi

Name changed for this. Sorry to post here but I feel like I'm getting to the end of what I can deal with and not sure where to turn. Any medical advice or anyone with similar experiences would be really appreciated.

I have a history of CFS mainly presenting with fatigue and headaches. If I don't rest when I feel like this then it develops into full on migraine. This has been going on for years but was gradually getting better with pacing etc. I used to be on the combined pill and my period could trigger symptoms - they would start about half way thougg period but I managed it by trying to plan to rest that week

5 years ago I came off contraception and had a child. I felt absolutely fine, no more symptoms, I thought I'd beaten it. 2.5 years ago I had another child. I stopped breastfeeding suddenly and the changes in hormones I thought made me feel awful for a few months but since then all was fine. I was living a relatively normal life.

In March I got the mirena coil fitted as I wanted to avoid the combined pill as I thought I was better since I stopped it. I believe it works differently, with a different hormone. Since the end of July I've been feeling awful. Headaches and fatigue are worse than ever, but its never lasted this long before. I cant work. I'm worried about my job. I cant do anything with the kids. I feel like I'm failing as a parent. Cooking a meal exhausts me. Blood tests all fine. Havent had any other tests as they have never shown anything in the past eg hormone tests and the symptoms feel the same as previous relapses, it's just lasting longer. GP has said to rest and try low dose of amitriptyline but I havent taken it yet as it has only taken the edge off the symptoms in the past and hasn't really helped the fatigue.

Now this could just be random. Or because I was working fairly hard and have two young kids, the general day to day exhaustion of everything could have triggered the CFS because I thought i was better and havent been pacing myself very well...I am trying to explore all options and the only other thing I can think of, is if it could be the mirena coil?

From the official list of side effects it seems unlikely however there is a lot of anecdotal evidence on forums like this from women saying it's made them extremely tired etc. and they had to have it taken out. However this is also usually coupled with other symptoms eg low mood, hair loss, weight gain, and I haven't got any other symptoms, my mood was fine before I relapsed, and although I'm extremely worried and fed up I dont feel depressed (supportive partner etc)

I know i could just take it out anyway but I want to try and get an idea of how likely a link is first, because -

• in my area the waiting list is huge and if I decide to get it back in that's months of waiting. In the mean time I was having horribly heavy periods and I have a tendency towards anaemia so if it's not to do with the coil I will potentially be making myself worse and will have to put up with that for months.

• there was a time lag of 4 months between when I got the coil put in and when symptoms started. That's about the same length of time it took my periods to settle. I suppose my question is really, if it was the coil that's triggered this, could it have taken this long, or would an effect more likely be felt sooner?

My GP says isn't that helpful, they dont deal with coils at the practice. The service I got it through dont have any appointments or telephone appointments for weeks and weeks so I can't talk to them and in any case I will get assigned to a nurse who probably wont have any more information on side effects than I do.

Just wondered if anyone medical had any thoughts on how likely it is that removing the mirena coil would help me.

Also if anyone has experienced issues with the mirena themselves, how quickly did your symptoms show up after you got it fitted?

Sorry for the length and detail, I didn't want to miss anything relevant.

Thank you for reading x

...anyone?

Last desperate attempt at a bump (promise!)

I had the Mirena taken out after a few months (it would have been sooner had they done it when I asked, and they only did so when I threatened to remove it myself), it made me feel dreadful, tired, took away my emotions and made me feel numb like on antidepressants, took away my sex drive completely, it was horrible. The doctor INSISTED that the hormone remains in the uterus area so it couldn’t possibly be causing these symptoms, however Internet forums tell you otherwise. It tools months for me to feel normal after having it out too.

I am sensitive to hormonal contraception anyway, and can’t take the pill for the same reasons and others. They say it’s a tiny amount of hormone but it affected me very badly.

I am not a doctor either but recently had my Mirena coil removed and it was as if a great weight has been lifted off my shoulders. I cannot explain it but I just feel lighter mentally and more focussed. Pill never agreed with me either and I have had hormone related migraines in the past (the latter not for a long time though -knock on wood- and never during coil). But to be honest - you ask 100 women and will get 100 different experiences and possibly more people who did have side effects will post about it then people whose coil is just there doing its thing. It is ridiculous your GP doesn’t deal with coils. They should at least be able to advise on it and I would persist to get advice personal to you from an actual doctor.

I don’t have any advice about the Mirena per se, but I have the copper coil because I didn’t want to take the risk of the additional hormones, as I’m incredibly sensitive to medication wrt my mental health.
So I’d just point out that if you’re concerned about the hormones and waiting lists, might it be possible to have it removed and replaced with the copper coil in the same procedure? I know that would be too much for some women, but if you’re lucky enough to be ok with the procedure, id recommend it.
I’m on my fifth coil, because of pregnancies and colposcopies, but I’m very happy with it.

There used to be a forum online completely dedicated to the problems that the Mirena can cause. I was the same - the Mirena made me tired, unbelievably bloated, pregnancy symptoms every month (which was unsettling, as my periods had also stopped). Things definitely improved once I had it taken out. The pill doesn't agree with me either - I think some people are just more sensitive to hormones than others.

I didn't get tired but the Mirena made my anxiety really bad, was near suicidal, lowest I have ever felt. Wasn't helped by every HCP insisting it couldn't possibly be the coil causing it! Every instinct told me it was, I practically had to beg to get it taken out, all in all a really crap experience. Was much better when it was finally removed. Get it whipped out OP, hope you feel better.

I have had a positive experience and am on my third Mirena. I think you just need to go with your gut feelings on this one as every woman feels different.

Hi thanks so much for your responses. I had been told that the hormone is local but that doesnt even fit in with the common side effects eg feeling nervous or skin issues!

To those that had the side effects @LeSquigh @cochineal7 @Areyoufree @Goldenphoenix can I ask, did these occur straight away or build up over a few months? Just finding it odd I felt fine for four months then its been constantly tired for the last two

Thanks again and glad removal helped some of you

Have it taken out. Some women are fine on it but personally if you have any existing health issues I would avoid it.

I haven't had the Mirena but I had the jaydess coil, I suffered from extreme tiredness, even worse than the tiredness in early pregnancy. I worked evenings at the time as a community care assistant and found myself falling asleep in customers houses. To the point where I felt like I had to physically hold my eyes open as they were rolling about in my head where I was trying so hard to stay awake. I had blood tests which found nothing. It suddenly clicked one day that it might be the coil, my dr couldn't tell me for sure as it's not one of the most popular side effects. I decided to take a punt and have it taken out as I felt so bloody awful, and within a few weeks I felt back to myself again!

I can’t remember if I got symptoms straight away, but they definitely got worse over time. As my periods stopped, the tiredness and nausea increased - I was convinced I was pregnant every month.

I’m sensitive to synthetic hormones. I wasn’t too bad on the POP but I was awful with the Mirena coil, terrible mood swings, paranoid, tearful. I would definitely get it removed and see how you feel.

I got my symptoms very quickly. I can’t remember it exactly but only had it in for a while and felt rough pretty much the whole time.

Hi did you feel better when you had it removed

Gosh it was a very long time ago! Yes I did, I think it took a couple of weeks to ease off.

Thanks! Good to hear 😊