mirena coil - is it worth it? Other options?

[oceandaisies]

Hi everyone,

I had the mirena coil fitted 5 days ago and since then its caused me nothing but grief. I know it’s been a very short period of time and that for some people it can take months to settle, but I was doing so well in terms of pain and periods on the progesterone only pill before this and it’s been really hard to be going through all of this again. My gyno recommended me to try it or I never would’ve even considered it as it’s never been something that appealed to me. I’ve had awful cramps and just generally felt unwell since it was fitted, lost my appetite and now have started to feel quite depressed. I’ve read through a lot of posts on here where people have had to put up with these symptoms for weeks or months, and mentally I just don’t feel strong enough to cope with this. I suffer from health anxiety as it is, and the knowledge of this sitting in my body at all times has really set that off too.

So I’m wondering if there are other alternatives that produce similar results that people might be able to recommend me, or if this really is the best option for treating endo symptoms? I have been told the ultimate goal is to stop periods from happening completely, which the pill doesn’t tend to do for me from past experience. I’m trying so hard to persevere, but all I want to do right now is call the doctors in the morning and ask for them to take it out so I can back to being on the pill and having manageable symptoms.

Thank you so much for any advice xx

[Circe3]

Hi there,

So sorry you are going through this, I was also considering the coil as I am having a hard time on the progesterone only pill.

I have been recommended Zalkya as alternatives by a private specialist but only he can prescribe it for me, this also will/may have side effects but is designed specifically for Endometriosis.

Another lady has had an implant with great success but my GP says it’s not reliable for Endometriosis and hard to get out if you have adverse side effects.

The problem is it’s all a bit of an experiment as we all react differently. I have also asked for advice on here with no reply, I think for this reason.

I think we might have to listen to what our body I telling us, get as much advice as we can and weight up the options of what causes the least problems.

I recommend a book called Heal Endo, I wish I had read it before taking medication.

I really hope you find some relief 🙏🏻

[oceandaisies in reply to Circe3]

Thank you so much for your response, I really appreciate it. I hadn’t heard of Zalkya before, I have an appointment with my gyno at the end of this week so I will definitely get his opinion on that as I will need to look at options if the pill doesn’t work out for me. It’s very hard when there are so many mixed responses to treatments, I know so many people who found the coil life changing but for me I was just doing so much better before I had it that I’ve now decided to get it removed. I respond well to the progesterone pill so thought this would be a breeze, it just shows how the same hormone can produce very different effects when administered in a different way. I hope you will have a much better experience than me if you do try it out, I think I am one of the unlucky ones since nobody I know in real life has experienced what I have and all love theirs.

Thank you for the recommendation, I’ve been interested in non-medication ways I can also use to help to manage things so I will definitely be checking this out.

Really hope you find the right treatment for you too, sending my best wishes xx

[Laurakirsty in reply to oceandaisies]

Hi there. I do not have the coil for the same reasons as you and feel for you. It is really a case of finding what works for you. I find Citalopram very helpful for Endo symptoms other than pain. I am currently taking strong meds which work but unfortunately they are so addictive and I am reliant on those now. Perhaps give the mini pill a try? I am thinking of that myself as the pill previously worked so well for me. Wishing you all the best x

[oceandaisies in reply to Laurakirsty]

Thank you so much for taking the time to reply. It’s good to hear that I’m not alone in not getting along with the coil as it’s so often been said to me how amazing and ‘life changing’ it is, but when you’ve already been in pain for so long it feels so counterproductive to have a treatment that causes even more. I was taking the mini pill before having the coil and it was already helping most of my symptoms with very few side effects so I will definitely give it a longer try to see if it continues to help. I have heard you can double up on them in an attempt to lighten or stop your periods if it hasn’t done that after a few months (the effect I was hoping for with the coil) so that’s always a potential option too if my doc agrees to it. Wishing you the best of luck with your journey too xx

[Yellow-Moo]

You know your body best and if the coil doesn’t feel right for you then get it out. I had the Mirena coil and I experienced horrendous pain from it and after 2 weeks I asked for it to be removed. I was told no, the pain would settle and I needed to give it time. I asked for it to be removed countless number of times and it was 4 months before my Dr finally agreed to take it out for me…

My advice would be to stand your ground and don’t be like me 😂 I was too polite and a massive pushover and as a result had to endure 4 months of complete agony. You know your body best and you have to trust yourself. It’s super hard to stand up for yourself especially when you’re in pain so maybe take someone with you to the appointment so you can’t back down if they say no? I wish I’d done that…

As for an alternative, I tried the DEPO injection and the mini pill but I’m now on no contraception so I can understand what is truly happening in my body. I’ve found since then my pain has become more cyclical rather than every day and I’ve actually found that easier to manage. Everyone is so different - good luck! xxx

[oceandaisies in reply to Yellow-Moo]

Thank you so much for taking the time to respond. I’m so sorry you had to put up with the pain for so long, it seems so unfair that they will allow us to suffer like this when the removal is so simple! This happening is my fear as I’m also a big pushover and struggle to stand up for myself so it’s going to be very difficult for me, but I really can’t imagine having it in for any more than a few days so I’m going to have to prepare to stand my ground. I have an appointment today that I will have to go alone to, but if I am unable to convince them I will make sure to bring back up next time!

I can completely empathise with that as I did the same for a few years, although sadly had a big flare up a few months ago so had to reconsider. I will continue the mini pill for now and cross my fingers it keeps things at bay, as I know a lot of these treatments just act as a plaster and hide what’s below. I really hope this continues to work for you and wish you the best of luck with everything too xx

[Yellow-Moo]

Good Luck! Stand your ground and trust yourself ❤️

[purpleblondie]

Hey....I'm really glad you asked about this. Thanks so much to everyone who has shared their experiences. It helps a lot especially to not feel so alone in the Endo journey.I just said I'd share my bit of experience of treatment so far....my gynae and GP have been pushing me to get Mirena fitted. I'm taking my time with this decision and trying to weigh up. So I decided to try Cerazette to see how I would react to the progestin hormone before going as far as to get the Mirena put in. Cerazette has been an absolute nightmare for me. I feel like what health I had apart from the endo Cerazette has(not joking) destroyed. The worst side-effects being the mood swings and down-right depression. Makes me feel really apprehensive about the Mirena and as said above everyone keeps telling me it will be such a 'life saver'. Needless to say, I'm still not sure and I feel so much pressure.

Someone mentioned previously about being better able to deal with Endo pain cyclically when off pill....I completely agree. The Cerazette gave me constant, everyday, lower grade pain which I find harder to live with because I'm always in pain as opposed to pre- Cerazette Endo which was (granted) horrible but I get it at specific times where I can prepare myself, deal with it and then have some good days in between.

But to share a treatment positive...today I went to see an Acupuncturist specialising in female health. I went to her feeling my usual endo pelvic pain and left with pelvic peace!!!!! It was fantastic. I highly recommend trying it. She explained to me in Chinese medicine they believe in preventing/treating 'blood stagnation' in the body so she did the acupoints for blood flow, hormonal balance and calm. Seriously I have not had a stab of pain since I left her clinic. I'm so excited about this and fingers and toes crossed I'm onto a treatment winner here. I couldn't help but share.

Obviously Acupuncture isn't a cure for Endo but it may be a solution without nasty side effects.

Hope this helps and I did not mean to write so much....

[oceandaisies in reply to purpleblondie]

Thank you so much for your response and sharing your experience, I completely agree on how helpful it is not to feel alone! I’m sorry to hear you had such a bad experience on Cerazette, I do remember struggling with depression and general low moods the first time I went on a progesterone only pill too. I’ve been told they often have more side effects since they effect your entire body, whereas the coil is more localised so should have less but I think some people’s bodies just don’t agree to having a foreign object sat inside their womb so in my case it has been the opposite. I will say that I have found that since starting a new mini pill, I haven’t had any of the low mood issues that I had with my first pill, so if you did decide against the coil but still needed some hormonal treatment in the future, it might be that a different progesterone could work for you (my current pill is Lovima which contains desogestrel).

I think it’s all about weighing up whether it’s helping you more than it’s hurting you, and why they can often push us to keep having something that is more life affecting than our actual endo symptoms is beyond me! I’m having my coil out today and have never been more excited to go to the doctors lol.

That is amazing to hear about your results with acupuncture. I had no idea that could be used to treat endo pain. I also have struggled with awful pelvic pain so this is something I will have to look into, a treatment that doesn’t cause even more mess to your body sounds like an absolute win to me!

I wish you the best of luck with any treatments you decide to take, and also keep my fingers crossed that you’ve found your side effect free solution there! Xx

[Londonluck11]

I had my excision June 22 and had the mirena inserted in November. I had awful pain for two weeks. But since then I’ve had no pain, but constantly bleeding. My doctor prescribed tranexamic acid which stopped my period. It was great but the side effects aren’t great with tiredness and painful joints. I’m considering starting the pill. My doctor said to give the coil 10 months and if I am not happy remove it. Hope you find a good option that suits you!

[oceandaisies in reply to Londonluck11]

Thank you so much for sharing your experience. It’s unfortunate that it seems to cause constant bleeding for so long when the reason most of us take it is to stop our periods! I’ve had it for a week now and am having it out today as I just don’t want to put up with this constant pain that could last for an undetermined amount of time. I wish I could persevere for longer and might even try again in the future (I’ve heard there is a smaller coil you can try), but doc is happy for me to try the pill out for now instead so hoping this continues to work for me. I’ve been taking Lovima (a desogestrel containing mini pill) since November and so far it’s had minimal side effects except for spotting, which ironically had stopped just a few days before I had the Mirena! I think these have 40% chance to stop your periods so there’s always hope with those too. I hope your Mirena will start doing its job soon as it does sound like a very good option if it agrees with you. Wishing you the best of luck xx

[Trancelove]

it has taking around 1.5 years for the coil to start working for me. like you, I had nothing but problems, depression leaving me in despair some days, did reduce my periods after 6 months but the endo pain was still there like before. Then like clockwork at 1.5years it all went away, the periods the heaviness and the majority of the depressive periods. I can still feel my body going through the stages of a period without the event happening, sore boobs and swelling and super emotional. It’s when cramping happens I feel the endo getting worse. And I do have flares sometimes, But overall I think it seems for me better than taking it out and nearly passing out not being able to walk and being sick for a week.

[oceandaisies in reply to Trancelove]

Thank you so much for sharing your experience. It’s great to hear that it worked so well for you eventually. After all that pain it’s good to know that the perseverance was worth it. I’m having mine removed today, but if the pill doesn’t work for me I will likely have to try again, so it’s good to hear that someone who experienced similar to me still found it worth pushing through. I hope it will continue to help you and wish you the best of luck with everything xx