Laparoscopy + or - mirena coil!? - Endometriosis UK

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Laparoscopy + or - mirena coil!?

Ameliaamb124
Ameliaamb124

Im due to have my diagnostic laparoscopy next week, after 5 years of suffering with lots of emdometriosis symptoms, and my consultant and nurses that I have seen are very keen for me to have the mirena coil fitted at the same time.

I have spoken to some friends and looked online, and all I see and hear are horror storries!? I told the nurses at my Pre op that I had decided against it, but they told me reavluate my decision.. Saying it would be my best option?

I'd love to hear from people who has had or still has the merina, and their opinions on it!

Thanks in advance 😊 x

13 Replies
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If it helps IM in the same boat. I am meant to be getting my mirena coil fitted next week and I am quite scared as of all the stories I have heard too. However I spent probably 30 mins talking to my gynaecologist on a check up appointment and I completely understand everything about it, how it will prevent etc.

It is the best option at the moment as I have been on pill etc I do not want to try the implant so this is the best option.

Make sure you are 100% before you get it done and if your nurse goes through everything so you feel comfortable because it’s only you who is going to go through it.

To be honest people are affected differently and the more you worry the symptoms are probably psychological so it’s best to make sure you are 100% an you can always get it taken out.

Cx

Lulububs
Lulububs in reply to Leah12

I agree... never google!!!!

Ur goin into something with bad reviews in ur mind so ur start to imagine it.

All my friends are in there late 30s to early 40s and they all LOVE the coil say it best thjng they ever done!

I havent done it ( for other reasons) but i have started to take the oral version of the progesterone.

So i take degesterol pop pill and i got to say i love it..

Moods gone... pmt gone, periods gone... pain gone....

What more can u ask

Hi, I had a coil fitted for endo in my second laparoscopy. Unfortunately it wasn’t the right treatment for me due to my tolerance of hormone treatments (or should say intolerance) however I know of a lot of people who find it works really well and have no issues with it.

Just remember very few people write stuff on the internet if things go well so you tend to only see the crap! I would suggest giving it a go and let it settle for a good few months (I gave mine 6 months to see if it would settle) and if it doesn’t it is a really simple thing to get it removed - not pleasant but not horrific and you may have cramp feeling for a day or two. If you can tolerate it then it is a really good option to control the endo! Good luck with whatever you decide.

Hi,

I had a first generation mirena when it was new tech - just for contraception. I didn't know about endo then, but had all the same symptoms that I do now.

It was a miracle for me. All my issues (pain, bowel, bladder) stopped. It was the first time I felt happy to be have been born a woman.

It was so good I was scared to have it out, and never had kids. At 40 I had it removed with idea of pregnancy before it was too late....then all symptoms returned and worse. I had the mirena put back when I had an endoscopy/biopsy but unfortuneately the symptoms pregressed rapidly in the interim and the mirena has only dampened them this time. Am discussing diagnostic lap with BSGE clnnic i have been referrered to. I will have the IUD put back for sure.

My experience with the oral pill in my late teens was a disaster - I reacted very badly. but the mirena - I am so thankful I got that when I did.

Everyone's different, but it was a success for me, and I am sensitive to hormal shifts (migraine, pmdd type of stuff). I gather the endo *if* it was there was not cured by my mirena, but at least I was able to get on with my life during those years.

Just to clarify - I am not confirmed with endo yet as I havent had the lap - but everything else has been ruled out and general gynae referred me to BSGE as probability of endo is high. All of what I said is purely my own personal experience.

I also remember reading the horror stories, but just to balance it out..the Minera coil worked wonders for me! And if they're going to insert it when you're knocked out even better, as that's the worst bit :) My periods became so light, my pain reduced. I did still have quite a bit of pain around ovulation, and some pain during periods, but it was manageable. Just bare in mind it did take about 6 months for it to settle, for those first 6 months it did hurt a lot, I bled irregularly and quite a bit and was rather bloated...but genuinely it was worth it and I think really slowed the progression of my endo. Once I've had my baby, I'll be asking them to put it straight back in.

Just remember you can always have it removed if it doesn't work for you, and that doesn't really hurt at all compared to insertion.

X

Hi, the posts above are such a good example of how different things work for different people. The mirena felt like a miracle for me for the first 6 months - I had none of the early problems lots of people talk about, but after 6 months all the Endo symptoms started creeping back and that’s when I finally got my referral to a gynaecologist and unlimately ultrasound and lap (which diagnosed stage 4 Endo and put me onto prostap).

Remember that everything is relative - I’d read all that stuff online about how much pain you can experience during and just after having a coil fitted but honestly, I walked away from that appointment thinking “I’d be over the moon if this was what counted as bad period pain each month” ( in other words for me the pain wasn’t anything compared to the Endo). Keep remembering that this is reversible (although if I was in your situation I’d want to check that it was removable by the normal method - a nurse at a GPsurgery - and didn’t require another hospital trip). You can give it ago and say if it’s not working for you. Good luck!

I got mine fitted at my follow up appointment after my lap and boy do I wish I was unconscious for it ha. Very sharp pain, and super uncomfortable, but in saying that I find smear tests really painful too! So if you decide to go ahead with it take the opportunity to have it fitted while under anaesthetic.

Since its been in I've had spotting almost everyday but apparently that's to be expected. I haven't had great experienxes with birth control in the path (pill, implant) ut this seems to be going OK for now. It's really just up to you at the end of the day and what you feel confident about living with. Several of my friends have it, and have had good outcomes which was the deciding factor for me. That and it had less side effects than other options given to me.

Good luck with it all!

I had my surgery ove4 a year and a half ago for stage 4 endo. I'd been on the pill for YEARS and although it wasnt perfect, I did not want to have the mirena as I too had read ALL the horror stories on the internet. Well...I ended up having the mirena fitted during surgery as my consultant really pushed for it. For the last 20 months I have been NORMAL! No pain, no periods...nothing. I can exercise again and do everything I couldn't. The endo has stayed away and I'm so pleased with the mirena. It is worth giving it a try!!!!

There are things to consider and be aware of though. They say it takes 6 months to settle in, with the first 3 months being the hardest. I took my pill on top of the mirena for a month or two to help myself with the side effects which worked wonders but once I stopped the pill I did notice some discomfort but this was nothing like endo and was very mild. After 6 months I have had nothing to complain about. I'd been suffering with endo for half my life so a few months of slight discomfort was worth it for me!

I had a post op appointment with my surgeon after a year and she was so happy with my progress. I have no signs of endo as the mirena is doing its job. It releases the hormones locally so it's the best preventative for endo.

I hope that you do really consider the mirena knowing what it is like in real life and long term. You might notice a similar pattern with some of the horror stories online as lots of ladies aren't aware of the 6 month settling in period. You could talk to your consultant about the best methods to help with the side effects during the first 3 months, as they will be the hardest. You always have a lot of people to talk to on here to help you through!

Thinking of you over the next few weeks! It will be worth it though xx

Personally, it wasn’t right for me and I had some really bad side effects. But it’s different for everyone, just remember if you do go for it, it’s not permanent and can be removed at anytime xx

Hey

I had same decision to make i chose not to have it fitted but for other reason( i am very allergic to things so did not want to take chance) but 4 years down line i regret it...

I have 4 friends with it fitted one for over 8 years and a couple for 3–5 years and they all LOVE IT.. think it best thing in world.

So about 2 months ago i decided to take the pill version. So it same progesterone but it is oral instead of released from the coil it called degestrol to see how my body reacted to it...

I got to say i love it... no spotting no periods no pain...

So im gona stick to this version.

So mayb u could try that first before u commit to coil or just stick with pill version like me...

Only thing is u have to take it same time every day no slip ups or ur have trouble.

As i always say noone goes online to say how good tablets are only to say how bad they are..

So for every one person on there saying a bad story there others out there enjoying life with no time or inclination to give a review. Just remember that...

I have vowed i will never google stuff.. that way u go in to something with a clear mind not waiting for side effects or bad things

An exploratory lap is just that - as yet they are just exploring. They do not - as yet - know anything about how bad your endo is! So should not be pressuring you to make any other decisions at this stage.

For example: what types of endo tissue are there your uterine cavity? There are different types of endo, and not all non-specialist gynaes can identify all the different types, or know how to remove them properly.

Further, they need to find out exactly where the endo tissue is growing (some endo tissue can be found in difficult-to-access areas, of the uterine cavity, such as in the 'pouch of Douglas' or on the outer walls of the bowel). Endo in these regions should only be removed by an experienced Endo Gynaecologist, who works in/with a BSGE Endo team. It is not the sort of work for a general, endo-gynae, who is just doing an initial exploratory examination.

If they find the difficult types of endo, or the endo in difficult-to-access areas, then you have to be referred to a specialist Endo Surgeon / BSGE Team. Therefore, it is absurd to be trying to persuade you to agree to have a mirena coil fitted, until they know exactly what types of endo, and where, you have.

My understanding is that you can stress that you only want an 'exploratory laparoscopy' and they should do nothing else until after the lap, when you have been informed of the results, and have had time to consider your options.

If you have difficult endo, or it is in difficult areas, then they should refer you to a specialist BSGE Team, for it to be dealt with.

A Mirena Coil might work wonders: it was a Godsend to me, and if all your endo is easy to access and is of the less troublesome types, then it is an option to consider. I wish I had been offered one, decades ago, when my Endo was diagnosed in a lap, but that was 25 years ago, and they were not so on the ball … but then I spent decades on the pill.

When I had a lap and removal about 10 years ago - when I still did not know all that I have explained, above, about endo - the endo grew back in a few months, and the pain was worse.

Then I did have a mirena - a simple insertion procedure - and all was wonderful, bliss, for the next few years, then I was soon post-menoapause, and all of it went away, and the coil was removed.

You need to get all the facts, and all the information first, before you make any decisions.

If you do not have any of the problematic types of endo, then it is easy enough to be referred to have a mirena inserted. It is certainly not as complicated a procedure as undergoing the lap. Don't let them pressure you, but do try to be well informed before you go - and remember you have the perfect right to say you don't want anything done until you have been told all the results and know exactly what the situation is. I hope this helps!

NB: Do try to check out anything written about Endo by Lindle, either on here, or online.

Take care,

Gritty.

I was diagnosed In May of last year after 10+ years of agony! Have stage 4 Had my second lap in August and after refusing the mirena the first time, I was basically told the mirena was my best hope for symptom relief, I reluctantly agreed but after 5 months I just couldn’t take the side effects and had it removed, about 5 months after having my first cyst removed I know it has come back so I felt it hadn’t helped much anyway! I don’t mean to be negative but that’s just my experience! Good luck 🍀

Go for the Mirena Coil! FOR SURE.

I have endometriosis, I even had a huge endometriosis cyst in my right ovary and pain and discomfort. My doctor advised me to try the mirena coil and avoid the laparoscopy, that was the very best advice ever! I have been on the mirena coil for around 3 years and I have forgotten completely I have endometriosis: my endometriosis cyst has shrunk up to a point I do not need any surgery and I do not have absolutely any endometriosis symptom.

No problems with the mirena neither, no secondary effects. It is worthy to give it a try. Laparoscopy is much much worst option than the Mirena Coil. Seriously, despite of the mirena horror histories, I have also read quite a lot of laparoscopy horror histories. I would go for the Mirena for sure.

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