Is it even worth it?!

Hello guys,

I know I gave a comment recently about having the coil fitted. Well I am about to have it done under general anesthetic next week Friday. Im well scared of the unknown!?!?! Im worried about the weeks n months maybe, of violent cramping and bleeding and aneamia, like I did with the pill. Especially as I work full time education.

Will it even work for stage 3 endometriosis anyway?!, it may make my periods lighter, but not sure about endo Im in pain everday day! Also it`s the thought of having something inside that I can`t remove there n then if its too much! Yes an having it out, (thats another thing!!!) Will that hurt too?? I honestly feel like cancelling it, (that is where my head is at) and then opt for a second lap of thorough excision an have the mirena fitted then.I`ve only been diagnosed 1 year 1/2, so still fairly new to all any thoughts of those on a longer journey would be welcomed please!..X

14 Replies

  • Hi, First is like to say I know everyone is different. This is just my experience.. I had no luck when trying pills, the patch, the ring and finally an IUD. On the IUD I started passing big clots, bled nonstop and pain seemed to get worse. I told my doc I would try it, I did, and hated it. He took it out less than 3 months later, which was painless for me. I think it's worth a try because I have read some women do find relief, if you're not ready or wanting another lap. It's your decision to have it, and also when it comes out! Good luck!

  • As mommy2 said everyone is different, I'm not 100% of what stage of endo I have but I know it's severe. The coil did absolutely nothing for my pain, the pain stayed the same and it made me

    moody/angry depressed. The doctors tell u it takes time to settle which I agree it does (about 6 months) but even after the settling things didn't get better. Your body may respond completely different and it might work for you, but in my opinion it's a horrible little thing xxx

  • Hi! I was v scared about having something inside too, esp when it says the strings hang down which you can feel... I had visions of getting them caught on something I sat on!! I can honestly say, despite thinking hard I can't feel it there at all! i am on my second mirena, and have had stage 4 since being diagnosed at age 16! I have tried every pill and have had 5 laps with laser and 1 with the major surgery excision thing (sorry I can't think of words today!). I have had lots of probs with the mirena, but have had minimal regrowth of endo. I only got the contractions after the first one and they lasted one night, prob 8-10 hours max. Unfortunately as I'd had it fitted during my major surgery, the contractions and my reaction to them meant I burst my stitches inside (which didn't become apparent until day 4 when I was home...not good!!). Having thought about things I suppose some of the pain could have been from the surgery too! Apparently it is normally easy to remove the mirena, and is only a little uncomfortable, but I'd still have mine out under GA! I have had probs with the mirena, my ovulation is a lot more painful every month instead of alternate months roughly. If you get pain during ovulation, the mirena isn't recommended. I wasn't told this! My periods are a lot lighter, and a lot of the time are less painful. For the first time since I was 16 I've gone more than 2 years without my acute "endo is back" pain. For this reason I have tolerated the other not so nice effects of the mirena. Although some of them are not great, they wouldn't stop me working...I've worked through a lot worse anyway! I'm not able to work at the mo due to another health prob, rather than the endo.

    My consultant unhelpfully told me before my 1st mirena, that people who think it won't help or are unsure about having it, have problems with it! As someone with a PhD in medicine I don't think there is clear evidence that this is true, however I wasn't sure about it and I've had probs with it, so it pains me to say that technically he is right in my case lol!!!

    What I would say is that there are a lot more people who benefit from it than not, and it has def in combination with the major surgery, limited my regrowth. I don't know what to advise you to do as everyone is different, but I have no knowledge on how it reduces endo that is there already, there could be an argument for having it put in after they have cleared all they can see, but then you might get more pain for several hours after you come round! I think it isn't advisable to have anything done that you're not sure about, but don't not have it because of what other people's experiences are, if that makes sense! If you have had children or a child, the risk of these side effects are significantly reduced too! (I haven't had any children)

    I hope you reach a decision you are happy with, and all goes well for you, take care xxx

  • Hi there, thanks for taking the time to explain your experiences to me. Though every women is different, I would say the cons far out way the pro`s and it really does seem that the majority of women with severe endometriosis, have a more problems with the mirena coil, than not, I`ve read that an awlful lot. And feel I should take notice and be realistic. It`s no easy quick fix! Also I know my body and my current symptoms, an think my gut will kick up dust against it.

    I also have not had children, which makes it highly likely my womb will be very angry an want to reject the coil like mad!!!

    I dont see the point in suffering even more unnecessarily, it`s like putting a tiny plaster over a deep seaping wound! I might as aswell get proper treatment through thorough excision an hopefully get longer relief that way. Thats the way I`m heading now.

    Thanks xx

  • Hi! I hope everything goes ok! Just re read your post and you've only had the diagnosis a yr and half, it seems a bit early in the treatment line to have the mirena fitted if you haven't had children...with me it was a last hope type thing, I've reached the end of the line and I'm too young to have the full hysterectomy/ovaries out, so it was very much a try this and hope arrangement! I think you are doing the best thing and listening to your instinct, I have gone against mine in the past and suffered for it, so I def recommend following any feelings you have! I hope you get some treatment that works for you, and you feel better soon xxx

  • The main reason to get it done is to shut the consultant up, they all demand you get it before they look at anything.

    Mine works, I get no periods! But it took 6 month before it worked. And my endo still grows. My endo pain is worse now but I'm too scared to get it out in case the endo gets even more worse so I have had it for nearly 3 years.

    I'm surprised your getting general for the fitting, it's not sore and the cramps after it are pretty mild compared to endo pain. For me anyway.

    Good luck and don't be scared. It's one of the thing that they won't stop pushing so the sooner you get it, the sooner you can take it out and get proper treatment.

    I know this sounds awful but sadly it's just the way the consultants are about it.

    Lots of love

  • Hi,

    I`m under a specialist at an endometriosis centre. Most regular gynaes are pushy but I havent experienced that, at the endo centre, they offered, rather than insist, I try the coil as a last option before thorough excision surgery.

    Surprised im getting the coil under general anesthetic, are you? Well I`m not, since I can`t tolerate regular examinations much less this, which is not unusual for women with endo. And have also read of lots of women who have had it done under general too for the same reasons.

    Given the severity of my endo, the mirena does not class as proper treatment, just means more bleeding n pain an still more endo growth in the long run. So I`ve pretty much oppoted out now, as it was my decision in the first place.

  • Sorry to have offended you!

    You are very very lucky being in that position and that you are being treated so well. A lot of us get treated horrifically and as that is the case with majority of us poor women!! unfortunately my comment is all WE let down people have to do because WE have no other choice. Most consultants don't see it an issue that people with endo are in terrible pain with examinations. Compared to bad endo pain getting the coil fitted is normally not as bad. If your under such great care then the coil wouldn't have been considered full stop!!

  • Hi, not offended but just feel we need to be mindful that although we have the same disease, as women, we are all affected by it differently, especially where treatment is concerned. An what one women, can tolerate, another may not, due to the level of the severity of this disease, which is so complexed

    The endo centres are in some hospitals under the NHS, accessible to anyone, who asks for a referral from the docs.. So there`s nothing special or unique about it! An it took a long time to get to this point, after being fobbed off and not taken seriously by doctors in the past. I`ve been there like most women.

    I was offered excision surgery, or the mirena, before wanting to resort to having surgery, which is as far as the `great care`has got to.

  • I had the coil fitted in November, I bled for a few weeks after but have not had any periods since. I had it fitted when I was having my 4th lap surgery. My endo pains subsided fot a few months but have started back up again which I expected so it hasn't helped with that but I'm not having periods (although I was back to backing my pill before this so wasn't having them then either). I suppose it depends on what you are expecting from it. Hope that helps X

  • Thanx girls, for your candid opinions and experiences, they`re no quick fixes with this disease, and it`s about knowing yourself an listening to your body and your gut instincts! X

  • Hi all, just thought I would share my story..

    I had my first lap a year ago and told I had endo around and possibly inside the bladder, after being treated for cystitis for 12 years!

    During that lap they put in the copper coil, but after wards they said in hind sight now we know it's endo u need the marina coil. So booked to have it swapped at my local docs, (it didn't hurt at all to be honest felt totally fine after a few hours, but I'm really good with pain (other than endo bladder pain ))

    They didn't remove any on this lap as the surgeon wasn't the right guy for the job and also labelled it as 'extensive'.

    The marina didn't really help for the first 6 months but now it's totally different, by endo pain has vanished! It's amazing. Like someone above said, it's got a few side effects I don't like such as more discharge, spotting all the time, and period pain, but all that I can deal with, where as u are all aware, endo pain u can't.

    I'm booked in for surgery this Thursday to have the endo removed and was really unsure whether to even go ahead. I started emailing the surgeon explaining how my pain has gone and do I still need to have the endo removed? Is it ok to just leave if it's not causing me pain? Will it grow etc. He was really sitting on the fence and didn't want to give me an answer as they can't really tell me what to do and I understand that, but at the end of his last email he said '...but if you want to have children in the future I would have it removed.'

    I didn't want to go through the risk of unnessasary surgery, but now he has said that I am going to go though with it. The nurse also made a good point, 'don't you want to know what stage it is, and how bad it is, if it was me I would want to know' and she's right, I would like to know.

    So it seems weird to me to be having surgery in three days when I haven't had pain for ages, I feel like the marina has cured me! But I do want kids soon so that's what I'm thinking of.

    To sum up, definitely try the marina! What have u got to loose, if it doesn't work take it out.

    Good luck to all..

    Jen, 27 years old xx

  • Hey! I'm 24 and on my second coil now. It's changed my life, and personally the short term effects of slight pain and irregular bleeding are worth it in the long run. Everyone is different but personally it's the best thing I've ever done. I got my life back x

  • Your gut feeling about this is very valid. I am in a similar space where I have refused it twice because I just don't think it's right for me. I also had a terrible reaction to the pill. It could help you - everyone is different - and unfortunately the only way to find out is to try. So I wouldn't say do this or that BUT if you have that gut instinct it is worth listening to it. The doctors might push you but you are the only person having a piece of metal stuck up in your uterus!! so don't let them pressure you. And if you decide to go ahead it might save you a recovery to have it done at the same time as the next excision.

    Good luck x

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