Has the coil actually worked for anyone?

[SatansLeftHoof]

I had the coil fitted during my second laparoscopy and I was just wondering if it's actually worked for anyone. I've been through most treatments, including a chemical menopause, and all of which failed. During my lap they removed some of the endo but had to leave a big chunk on my bowel, which may need further surgery with a specialist bowel surgeon and a gynae. I just think it's pretty damn laughable to say oh the coil may help when far more hardcore treatments have failed and frankly I'm sick and tired off this now. I've been in pain for three years and I just want the damn surgery but I still have to jump through their damn hoops. And, to make things even more fun I've got my period due in a few days as I'm coming off the pill for good. Three weeks after surgery. I know for many women the coil can cause heavier periods too and I'm genuinely wondering why they insisted on fitting it. A private gynae I saw said there's no real proof that the coil helps endo at all. I'm just very tired of fighting. Please help me.

[Kez83]

Hi fluoxacillin,

It's sounds terrible what you've been through and what you still are going through.I'm sorry I have no words of wisdom but I'm following your post out of interest as I've been wondering that since joined this forum. The coil doesn't seem to get much good press! I'm currently not on any hormone treatment but I'm interested as who knows what will happen over the years. As you've said it seems to get pushed a lot! I'm quite small in height and build and was told once that girls built like me will always struggle with the coil. ?? No idea if that's true!

Hope you get some useful responses to help with your frustrating situation. Good luck!x

[SatansLeftHoof in reply to Kez83]

I'm glad it's not just me wondering! No I've heard more people not get on with it than it's helped, but we shall see. I presume you have endo? I've not heard that but I sincerely hope it's not true because im rather small, 5ft 1 and around 8.5st last time I hopped on the scales. Ironically the last time I was on the scales was my pre op assessment. Thank you and if you need any endo advice I'm always happy to try and help

[Kez83 in reply to SatansLeftHoof]

Thank you. I've just read some of your posts from earlier-wow, you really have had a rough ride! I'm no expert but I think you should complain. Doctors are all we have to trust and we do so because they're educated people. I personally don't think it's too much to ask that when they're out of their depth they too seek advice and second opinions! Instead some just feed their God complex and frankly talk rubbish! I'm about an inch taller than you and 5lb heavier and all my life my docs have clearly looked at me and decided I'm fine as I don't meet any of their risk factors for them to lecture me about! I'm sure for others the lectures is all they'll hear which is equally as awful. I feel the same as you about the coil. Hopefully what I was told was old wives tales. Sorry I didn't mean to rant there...Just get carried away!

Back to your question. Following years of pain and complaining throughout being on the pill I came if the pill and have suffered both crippling period and ovulation pain on my left which led to the discovery of a cyst in my right ovary this year. An MRI has indicated that's it's likely to be endo.So no formal diagnosis yet but through joining this forum I'll be amazed if it isn't!I've just had my gp (who isn't feeding her god complex 😊) refer me to an endo specialist centre so my waiting begins. Just wish I'd pushed harder years ago but hey ho, I know it could be worse.

Again, thanks for the offer of advice,I'll see how I get on. I'm new to endo buthappyto help where I can. Keep me posted xx

[Sam341]

Hi,

Sounds like you are going through hell 😔

Well my experience with the coil is that it stopped my periods completely. I got no period symptoms at all. I have had it 2.5 years and the only time I have bled is after a lap in April.

But it took 6 months to work. And it was hell for the first few month with bleeding and pain. You really do have to have a shitty few months at first before you see any benefit. It's in there for 5 years so a few month isn't much if it will help long term.

If your endo pain is mainly due to your period then it may be worth ago. The worst that can happen is that you don't like it and get it removed.

As for it stopping endo. It doesn't!! I have had endo grow even though I do not have periods and have the coil. And I am in daily horrific pain and have been for a few months now even though I have the coil and no periods.

So it won't cure anything and it will take a lot painful bleeding before your body gets use to it.

I personally won't be surprised if there is a connection to the coil and weight gain but my dr said its impossible.

Iv kept it because I don't won't to risk getting it out and the periods making everything worse than they are and having to go through the first few months again. I'm probably very lucky to not have any bleeding. And my endo may have been a lot worse if I didn't have it. No idea.

I have tried a lot of hormone pills, injections and nothing agreed with me. Only the coil.

And it works well as contraception.

[janeingirona in reply to Sam341]

Hi Sam,

Can I ask if the pain you had at the beginning was 24/7 or on and off during the day? Also was it just around periods or every day?

I'm 8 days in and am in so much pain I don't think I can take it. Mainly pelvic, but back, stomache and leg ache too as well as nausea and painful/loose bowels. And bleeding pretty heavily (coincides with period)

I was told to expect some pain and bleeding but surely not to this extent?

Did you experience anything like this?

[SatansLeftHoof in reply to Sam341]

It's not much fun I must admit. I get chronic pelvic pain sadly, usually every day and often all day. So far the pain is like I was pre op, and I'm withdrawing off the pill too so am bleeding, but weirdly it's super light, but super painful. More painful than my usual heavy periods. Did you find that with the coil? I'm not quite sure why they're plugging the coil so much in regards to helping endo, a top private endo specialist said there's no proof at all it helps endo, and I feel I was essentially forced into having it as they made me feel like I'd relieve no other treatment if I didn't at least try it. They did the same with me taking zoladex. What were your symptoms as the coil settled in? Have they given you any other treatment for your pain?! It sounds absolutely terrible, you poor sod thank you for responding

[Sam341 in reply to SatansLeftHoof]

Hi, that is exactly what my symptoms were with the coil. Lighter bleeding but very painful and cloty.

And I would bleed a couple of days most weeks at the start. It did settle and after about 4 months I was period free.

The coil for a lot of people stops periods (Like me) which means no painful bleeding. That is why it is pushed by gynaes. I'm sure my endo would have been a lot worse sooner of I didn't have the coil. I am scared that if I get it out my pain would be worse. The coil doesn't stop endo, I am proof of that but I believe it will help with the period side which is where most people have the problems.

As you are in daily pain it might not make much differenta but if is stops the painful periods then that has to be a good thing.

Only 2 more weeks until I see a new gynae 🎉🎉🎉

Hope everything settles down soon for you Hun

[AmeliaJane123]

Hello..... I'm 22 and recently diagnosed with endo, have been on esmya hormone trial treatment to try and shrink my endo and I think (fingers crossed!) it has worked!!!! I have the copper coil and swear by it, but unfortunately not to stop endo!!! I feel like it may help a little with symptoms though. It has no hormones and as endo is hormone related it's got to do something right?! I guess!

You sound like you've had it rough, it's so hard to think positively when you are constantly up against the medical lot to think they know everything but of course they see you for a ten minute appointment then they move on. You do what you need to do!! But maybe if the hormones in the pill aren't helping the copper coil might be good for you? xx

[SatansLeftHoof]

Hi, thank you for replying! I have the Mirena coil which is progesterone based, but only a very low dosage, the equivalent to taking two progesterone contaceptive pills a week according to my gynae. What is the esmya hormone trial? Is it the one they were advertising on spotify? I was referred to a trial (unsure which one) but was turned down on the grounds I couldn't take the only pain relief you were allowed on the trial, naproxen, because I have a stomach ulcer. I fail to see how a lower doses hormone treatment will work when literally stopping my ovaries didn't even help me endo. Thank you for responding, I appreciate it

[Mabes]

I have the Mirena. I got it fitted in November during my lap. Like one of the other ladies said, I had a hellish time after that waiting for it to settle. It took 4.5 months. The biggest change for me is the light bleeding. Before the coil I was a really heavy bleeder. Now, although I still bleed for days, it is much lighter and from that point more bearable.

I can't say if it's helping prevent the endo getting worse though as I think it is hard to tell and too early for me. I have been having some symptoms return since the past couple of months (I noticed a minor change/shift around 5.5 to 6 months after my lap) - bladder and urination related pain mainly - so I don't know... I know they removed endo by my bladder and I'm not sure if this means they didn't get it all or what really.

Anyway, I don't think I'd get the Mirena just for endometriosis. I think it is useful if you've suffered heavy bleeding and also if you want a long term contraceptive that doesn't have to be thought about like taking the pill.

[Foxy321]

Hey,

Absolutely feel for you, it sounds like you've had a horrendous run of it.

I've got a bit more of a negative coil story. I had the Mirena fitted when I had my Lap 3 yrs ago, as with the other girls, I went though hell for the first 6 months.. I was having a period every 2 day or 3 days, no distinguishable cycle, I'd just start out of the blue, bleed for a few days and then stop. After 6 months, this settled, to once every few weeks. still no distinguishable cycle and still very painful.

My GP then prescribed me Microgynon which is a combined hormone contraceptive pill. I take this back to back for 3 months with a week break. Now I only have a period every 3 months. but I have such huge amounts of hormones in my body I turn into a monster.

It hasn't helped with my Endo to my knowledge, . Still suffer every month, period or no period. I kept it mainly for contraception as I fell pregnant whilst on the pill so didn't want to rely on just the pill again.

I do hope you find something that works!

[SatansLeftHoof in reply to Foxy321]

Sounds like you've had an equally as bad run! Have you become anaemic because of the bleeding out of curiosity? I was told the coil could aslo help my chronic anaemia, but sounds like another fibsie I was told simply to get me to have this goddamn thing. I'm yet to hear of a positive coil story to be honest. The gynae kind of made out it was this life changing thing yet the more people who I talk to either say it's awful or simply ineffective. I just want the surgery,mm fed up of jumping through their hoops to get the treatment that will actually work. Grrrr.

[Foxy321]

It seems that we're all just left to jump through hoops from one ineffective treatment to the next unfortunately.

I've been borderline anaemic since a young age, the coil hasn't really helped with that, hasn't made too much of a noticeable difference at least. I don't currently take any supplements for it though as it isn't something that affects my day to day and I take enough pills already!!

[SatansLeftHoof in reply to Foxy321]

It's disgraceful isn't it. I'm beginning to feel like a large portion of the NHS doesn't care about women. I wish I hadn't had this damn thing inserted now. I was essentially forced into having it because they made it sound like they wouldn't give me any other treatment until I'd tried the coil. apparently floradix is good for boosting iron but I can't say I've taken it before. I don't even need the coil for contraception, I'm single and intend to stay that way. If I could yank it out myself I would (I'm not going to, I don't want to hurt myself.) I'm just tired of fighting, I think we all are and all I see on here is an awful lot of in pain, tired women who feel afraid and abandoned by the health service and that is so damn sad. And unacceptable.

[Hidden]

hi, I was offered the mirena as an option prior to laparoscopy, it worked wonders for 6 months until around 3 months after my lap when pain started returning and now im on more tablets and potentially may have to have another op later in the year. it still has an effect on bleeding but the pain levels are now back where they were before I had it fitted. I hope that helps a little. good luck with your treatment and I hope you get some relief soon xxx

[SatansLeftHoof in reply to Hidden]

Hi, did you have any issues with it settling in? A lot of people said they had hell at first and I'm now coming off the pill for good and to put it simply I can feel a storm brewing in my uterus and it doesn't feel any different to pre-lap premenstrual pains. That said I am three weeks post op so I am just hoping its that making the pain worse, but as my external wounds have healed even though they were infected in theory my internal ones would have too. I can't face months of bleeding.

[KerryKB]

God, it's almost like reading my own story reading yours! I'm so sorry you're going through this too. I had the coil fitted during my lap 2 and half years ago after almost 10 years of misdiagnosis and excruciating pain. I felt great for 3 or 4 months but by month 6 I was back to square 1! Was told that they couldn't get the endo off my bowel due to the risk of perforation and that they wouldn't consider anymore laser treatment for a least 2 years. Can you believe they advised me to change my diet?? The advice consisted of 'if you fry something and get pain, boil it, if you boil something and get pain, fry it!' Needless to say I left the hospital sobbing Since then I've had the mini pill, combined pill, chemical menopause and none of them have worked for longer than 2 or 3 months. They won't do a hysterectomy as i'd need HRT because of my age and that will just make what's left over grow even more. To top it off, they refuse to remove my coil - they said it's more hassle than it's worth!!

I'm now at a total loss of where to go next and can totally sympathise with how you are feeling. Wish I had some words of advice or hope but as I sit here with my TENS machine on (my new best friend) and full of painkillers all I can advise is drink loads of wine then it doesn't seem so bad lol x

[SatansLeftHoof in reply to KerryKB]

I wish I could give you a hug. Change your diet, what a fucking joke. Have you spoken to a specialist about the bowel surgery? I was told mine could leave me with a temporary stoma bag but frankly if it means no more endo and no more pain then to hell with it, I'd take it. THEY SAID WHAT no no no get that thing out even if you have to see a different doctor. Did you go through zoladex treatment? And did you get any side affects? Is your surgeon a BSGE accredited one? If not I can give you a link to a list of the centres.

[KerryKB in reply to SatansLeftHoof]

Hi fluoxacillin. All hugs are gratefully received To be honest, i'm lucky if i've seen the same gynae at each appointment never mind a specialist! They've been very flippant about my bowel endo and when I questioned it again I was told, you have endometriosis and always will, it's too risky to touch your bowel. Go home and live with it! I was on decapeptyl which I believe is the similar to Zoladex and it was the worst 6 months of my life! Not only didn't the pain go, I had every menopause symptom going. Couldn't pay me enough to go through that again. I've had a look at the BSGE accredited centres since I read your message and the nearest one to me is in Edinburgh. How do you go about being referred to it?

Hope you're having a pain/stress free weekend xx

[SatansLeftHoof in reply to KerryKB]

More than welcome! Surely they've put you under the team of one gynae and you see one of his registrars at the very least!? That's bollocks I was told they could try and remove mine. I feel your pain, zoladex was hideous and I didn't even receive proper warning of what it would do to me. Apparently it's against NHS guidelines to induce a chemical menopause In anyone under 23, I was 20 when I was essentially forced into having it. I'm not sure, to be honest I had to go to a private gynae and get a second opinion because they were being so shit, who said immediately surgery was my best option. I then marched into my doctors with and said look, now what can you say to that?! He then wrote to the specialist and I was put under his team and told try progesterone tablets. (This is after I'd been on zoladex and that failed miserably) I then saw one of his registrars who told me they wouldn't consider doing the surgery and got referred to a research trial, which I couldn't do because I cannot take naproxen because of a doctor fuck up that gave me a stomach ulcer. Cue many more months of demanding decent pain relief and surgery. I then had my appointment in December and marched in there with metaphorical war paint on ready to demand a surgery. Finally I saw the specialist himself and he said we have no option to do the surgery as all other treatments have failed and the coil is also really beneficial so we could insert it during surgery. I got the surgery seven months later. If the coil fails I'm pretty much on last chance alley so hopefully I will get surgery number three pretty pronto but we shall see. Sorry I've not been very helpful or given you a straightforward answer. I think your best option is to demand a referral if I'm honest. Don't be afraid to be an arse to them, they don't take you seriously so screw them, your health comes first.

[SatansLeftHoof]

Also, and I know it's a trivial, vain thing, but did anyone ones boobs shrink once they got the Mirena coil? I've read a few posts (not on here though) saying that people's boobs had shrunk once they got it, although the majority of Mirena and boobs related posts indicated sore boobs and breast growth was more common. I'm coming off of rigevidon, a combined pill containing estrogen and progesterone, to a low done progesterone only coil and, well, I'm quite fond of my boobs and don't want them shrinking!

[Kimleng in reply to SatansLeftHoof]

Sounds like hell what you've been through, you are one tough lady!! I had the marina fitted during my first lap, I had issues as my body rejected it but after they put another one in, it's totally gotten rid of my periods. My boobs haven't shrunk, not much else has changed other than the joy of never needing to spend money on sanitary towels and the like. Before my second lap, the consultant thought it'd be a great idea to prescribe me more hormone tablets (which I never took) to reduce the bleeding, but it turned out it was endo causing the bleeding and not an actual period. That's the thing -- the marina did NOT reduce the chances of me getting endo, I ended up with it regardless of it being in there or not. It HAS elminated my periods full stop though, so when I do bleed, it's like a weird scary unknown thing that's happening to my body that makes me freak out. The irony.