Experience of the implant?: Hi all, I was... - Endometriosis UK

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Experience of the implant?

Eternalsunshine0o profile image

Hi all,

I was diagnosed with endometriosis in August 2020 following a lap. Unfortunately since this op my symptoms have been much worse.

I’ve found some relief from having the depo injection which usually stops me from having a period. This is usually administered every 12-13 weeks but I have it every 11. In the last 6 months I’ve found it’s wearing off at around the 8 week mark so I’ll have intermittent bleeding and increased pain. I’ve spoken with the consultant who suggested doubling up and taking the mini pill but this would increase my risk of blood clots so I’m really concerned with doing that.

Im wondering if the implant might be better in the long term but I’ve only heard bad experiences from this from my friends who don’t have endo.

I’d appreciate your views on this, good or bad!

Did it stop the bleeding? Did it help with hormonal mood swings? Did it help with the pain?

The consultant thinks my weight is causing issues with the depo. I was a little disappointed with this explanation as it’s not every round that it wears off after 8 weeks. I’m worried I’ll book the appointment for the implant and be told I’m too big :( so I’ve been putting it off.

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Eternalsunshine0o profile image
Eternalsunshine0o
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18 Replies
white61 profile image
white61

Hey, not sure if this is helpful or not but I’m on the coil and the pill. I’m still in pain but it’s stopped me bleeding. I have not been diagnosed with endo but not sure if this would help you at all? The coil was uncomfortable when it was fitted and I had a bad flare up of pain after but once it settled it was okay. However I do find I have a lot of mood swings and I’m quite short tempered.

Eternalsunshine0o profile image
Eternalsunshine0o in reply towhite61

Hi- I must admit I’m too nervous to have the coil. I’m not sure I could take the flare up after it’s fitted.

F1Lucy profile image
F1Lucy

Hi Eternalsunshine0o, I am on the shot (I have Zoladex monthly), but I also have a Mirena coil. I've always struggled with the pill over the years and a consultant recommended the coil instead. It's non-hormonal, but it stopped my periods after a few weeks. I know we're all different but it might be worth asking about the coil as an option instead, some of them are designed to stop periods and some do have hormones in, they should be able to recommend which one would be most suitable. Good luck, hope you find something to help you soon

Eternalsunshine0o profile image
Eternalsunshine0o in reply toF1Lucy

I forgot to mention I’m too nervous to try the coil. I’m waiting on an appointment to possibly try zoladex

Potts22 profile image
Potts22

Hi there. This might be a silly question, but have you tried just being on the pill? I am in your position - I had my op Sept last year and it made my symptoms worse in so many ways. I'm on the single pill, which means I still have periods, but it has helped with my period pains (it took about 6 months to do so). The pill hasn't helped me with my other symptoms though.

Eternalsunshine0o profile image
Eternalsunshine0o in reply toPotts22

I always struggled with break through bleeding on the pill so I switched to the depo. Before the last surgery the depo injection worked really well.

elhxm profile image
elhxm

Hiya i haven’t had a lap yet so i’m not sure if i have endo but i do have the implant and i’m still in a lot of pain and the bleeding for me is almost constant 3.5/4 weeks of bleeding and spotting but everyone is different this is just my experience.

Summers88 profile image
Summers88

Heey so I have endo and have had two laps, i had the implant put in to see if it will help which it didn’t, then was told to go on the pill with the implant which didn’t help. I personally think these hormone treatments only work for a small amount of time. Iv had steroid injections which also didn’t help, many pain reliefs which didn’t help. I have given up now trying to find something to help! But I don’t think weight is a thing when putting the implant in, so don’t worry about that :)

BeTheSunshine profile image
BeTheSunshine

I had the implant some years ago and found it fantastic, no periods, felt completely normal. When I had it removed was when I really noticed my endo symptoms. I was diagnosed by lap in 2019 and had surgery in 2020 to remove the worst. I then went onto the combined pill but then changed to the implant again last year As I was worried the combined still meant I had period and has oestrogen in it. On the implant I’ve had 1 period, feel completely normal and no pain. Interestingly had it removed 3 weeks ago as hoping to have a baby (keep your fingers crossed for me as no idea if that’s even possible) and I have been bloated and spotting ever since and some of my original symptoms feel like they’re returning. Hoping to push that to the back of my mind but if no joy with pregnancy then I will be straight back on the implant. Hope this helps

Eternalsunshine0o profile image
Eternalsunshine0o in reply toBeTheSunshine

Sending positive baby vibes your way.

Roxita profile image
Roxita

Sorry, no positive experiences to share from me unfortunately. One of the worst decisions ever and has forever left me slightly distrusting healthcare professionals :/

I had implant prior to endo diagnosis, but I already had super painful and heavy periods which where just treated as "unfortunate part of being a woman".. long story short, implant resulted in 12 months of continuous light bleeding. I begged for the nurses to take it out, but was just ignored for months as "it's just your body getting used to it".. eventually, I had so low iron levels that my GP had to prescribe supements. It was also at that time I developed IBS.. and only now by doing more research I've found out that implant could have been partly to blame. In addition to that, I was really struggling to keep on top of my weight - I was exercising A LOT, 6 days a week, sometimes 2x a day., earing reasonably well.. and yet I was overweight. Of course, it was easy for the doctors just to say its nothing to do with synthetic hormones - but funny enough, as soon as I eventually had it taken out my weight dropped, my boobs got smaller (which I was happy about), and IBS got better...

As far as pain goes - well yeah technically I could say I didn't have the horrible pain which I have when off it. But continuous period for a full year... yeah, thanks but no thanks.

The experience of implant and how nurses and doctors treated me is what's actually made me obsessively research and question any medication I get prescribed. And I make sure the doctors are actually able to explain what the active ingredients are what they're prescribing, what are the known side effects - and if some are not known then why? Is it because research has not been carried out etc. And trust me, once you start doing the research and asking those questions you'll soon find out the limitations of what is actually known in general, as well as what the drs or nurses treating you know..

Eternalsunshine0o profile image
Eternalsunshine0o in reply toRoxita

Gosh im sorry to hear that. I hadn’t considered how they’d react if I wanted it out. Some weeks I can’t even get through to them. I had a similar experience after my lap where I bled continuously for around 6/7 months and kept getting dismissed. My GP eventually sent me up to the hospital and after hours of waiting they asked me why I’d bothered as I looked fine.

I think I’m going to go with my instincts and not have the implant.

Roxita profile image
Roxita in reply toEternalsunshine0o

It's a difficult one to know what's right to be honest. And I think part of the problem is that our hormone levels are not tested prior to being prescribed or put on those synthetic hormone treatments. Implant (as well as mini pill, and mirena coil) are all progesterone only treatments. Of course, they're all administered differently, and the actual synthetic version of progesterone is different in all of them so it could very well be that for one person Implant works perfectly because that's exactly what their body was missing and it was causing all the pain and suffering.

But for someone else maybe this wasn't an issue at all. And yet none of this is tested in any shape or form, its like we are treated by trial and error, maybe it works, maybe it doesn't 🤷‍♀️🤷‍♀️🤷‍♀️ we don't know before we try, doctors don't know... just wait and see basically 😵‍💫

I'd say if you do reconsider and want to give it a try then be very very VERY assertive with the doctors first, ask what side effects, at what frequency and for how long are seen as "your body getting used to it" VS what they consider to be not acceptable side effects and when you should make an appointment and they're willing to take it out. Even ask if you could have a 3 and 6 month review to discuss how you are getting on with it. Also ask to have your baseline iron levels tested, and re-tested again if continuous bleeding occurs. If none of this is possible and you are told to go home and see what happens then I personally would not take this risk.

When all this happened to me I was in my early 20s, still at Uni and also an immigrant to this country (well aware how I was supposed to never complain a word about NHS and treat is as best thing since sliced bread 😒). I'm older and wiser now and not a chance chance that I'd let a doctor, NHS or otherwise, get away with this bs when it comes to my body. One of the biggest learnings has been to stand up for myself, for my health and be the person who takes the ultimate decision when it comes to agreeing, or rejecting a treatment. Never ever will I be simply "put on" a medication again. I want to know what I'm taking, why, what are the side effects and what to do when they occur.

Good luck to you on your journey! Hopefully you'll find a solution that works for you xx

TennisCourt profile image
TennisCourt in reply toRoxita

Sorry to interrupt but Roxita thanks for sharing this is so empowering to me!!! I do not get along with birth control, yet NHS does not listen and just always wants me on it so I’m glad I’m doing right standing my ground like you and I will do so more confidently now. We know our bodies and I know it doesn’t agree with me. And you’re right, they don’t know what’s in them and that’s super scary xx

Cocoacupid profile image
Cocoacupid

I found the implant for me made me extremely depressed and it made me put on so much weight think I only had it in about six months. Have the coil now it’s my second one better than pill as it felt like I wasn’t even on anything at all on the pill. Yes coil feels a little uncomfortable for a day after fitting but for me think the coil has been fitted far to

Late as have severe deep infiltrated endometriosis. Do what you think will help . As what others have said is so true what works well for one person won’t work well for another trust your gut and ask advice from ginea and doctors

TennisCourt profile image
TennisCourt

Hey! So I’m not diagnosed yet, got my lap in October so I cant comment if the implant with help with Endo pain as such.

But I’m 26 now and I had the implant from when I was 16-19 and it was HORRIBLE. It made me an actual psycho emotionally. Worth noting everyone is different and I don’t respond well the birth control as a general but the implant was by far the worse for me personally.

It did stop my periods at the time, but so did a lot of birth control back then (it doesn’t anymore). I remember sitting at the doctors crying saying I can’t stand it anymore just how the implant made me feel emotionally and mentally and their solution was put the pill on top of it so I did. Looking back I don’t think that’s the correct solution in my eyes.

I’m currently on no birth control and kind of plan on staying like it I think. Only one left to try for me is the coil. Yes no birth control makes my period heavier and more painful but on birth control I bleed like constantly and I can’t stand it mentally!! As far as I’m aware birth control just masks symptoms and not really a solution

Best of luck xxx

Kieraface profile image
Kieraface

hiya,

I have the nexplanon implant and I had a 90 day period which my other half lovingly refers to as ‘ Shark season’ rather than the usual ‘shark week’

Originally it worked great and I would have 4 months off and bleed for a month but then the time between bleeds got shorter and the bleeding got longer. My gyny specialist has recommended the mirena coil as it’s localised and apparently works better.

It’s not gonna hurt to try the implant though. It lasts 3 years but it can be removed sooner if it doesn’t help, although they do like you to have it for at least a year xx

emeraldlove profile image
emeraldlove

Hi.

I’m on the nexplanon implant and i’m not sure if i’m just stressing myself out but I think it makes my endometriosis symptoms worse?

I honestly have been pushing to get this thing out of my arm but i’ve been ignored. I just keep getting told the nurse will call me back and she hasn’t since March🙈

Like they say birth control is different for everyone. It may really work for you and not work as well for one of your friends. It completely depends on your body. You could always give it ago for a month or two and if it’s not for you, definitely have it removed❤️

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