Last resort for me: Mirena Coil - Endometriosis UK

Endometriosis UK

70,129 members51,941 posts

Last resort for me: Mirena Coil

Sez1988- profile image
12 Replies

Hello ladies, long time no post as things have been bad for me recently.

I am due to have my surgery at the end of the week, laparoscopic treatment for endometriosis (and to see where it is, he suspects bowel as well as the usual places) and a cystoscopy to check why I'm having horrible bladder symptoms alongside the endo. I'm terrified as I've never had a general before, or been cut into!

Anyway on topic: he did say at my appointment when this surgery wad arranged that if I wanted, he could fit a Mirena Coil on the day whilst I'm under the anaesthetic, I just need to tell him on the morning. Now I am in two minds about this, as I have tried pretty much every contraception available apart from the depo (which I definitely don't want) and I always seem to have bad reactions to hormones. However, both my consultant and GP have said the amount of the hormone that enters the bloodstream is negligible, and it shouldn't cause me any problems like what I had with the contraceptive implant, as that was horrific for me.

I have reached the stage where I can't have sex at all anymore really and condoms just seem to make it more painful even when we do try, and cause horrid dryness. I don't want any more children at all either, I'm terrified of getting pregnant. Husband is pondering a vascectomy but obviously it doesn't work right away and he's waiting until I've had my surgery to book it so he can be here for me whilst I recover.

I'm just wondering if anyone else has had one, and what their bodies' reactions were to it? And did it help the endometriosis symptoms?

Written by
Sez1988- profile image
Sez1988-
To view profiles and participate in discussions please or .
Read more about...
12 Replies
Sylva123 profile image
Sylva123

Hello,

Firstly good luck with the surgery. I had my first ever one yesterday and was terrified of the anaesthetic and of waking up to find something bad has happened but they were so nice - you get to meet the surgeon or one of his team beforehand to ask any questions and you meet the anaesthetist who talks you through what to expect. I just drifted off to sleep and then woke up in a different room and it was all over. Mine was day surgery so I ended up going home about 5 hours after the op. I felt a bit sick so they gave me amazing anti nausea medication so I could eat. Hope that eases your nerves. I was terrified - I understand how scary it is. Best if luck!

Secondly, I am also crazy with any hormonal meds (will never touch the pill again) but Mirena was the only thing that ever worked for me. Made my periods & pain really, really light and I felt just like a normal person for the 8 years I had it. It even helped my hormonal skin and lose a bit of tummy weight. My hormonal issues is low progesterone though, so I know it's not the miracle cure for everyone. It definitely changed my life for the better.

EHS2000 profile image
EHS2000

Hello! First of all best of luck, I had my first lap last Thursday so I totally know how you’re feeling. I really hope you get some answers and it improves things for the better.

I chose to have the mirena fitted last Thursday after uming and ahing for a long time. In the end I spoke to a lot of people who said similar to the lady above me on this post. They also said that due to the localised nature of the hormone release it was less “invasive” than other forms of hormone therapy and would be particularly effective for adeno (which the lap confirmed I have). Having tried everything else I sort of thought I might be scraping the barrel but I thought I might as well give it a shot. My surgeon also told me to book in with my gp for six weeks after the op and they will check it’s all fitted in correctly and hasn’t moved, but if I really hate it they’ll remove it then and there. I have had really bad cramps since having it put in and quite a lot of bleeding (this could just be me though), though I guess this could also be the lap and the other stuff they did down there. But just something to bear in mind - we’re all used to cramps but it’s not exactly fun as well as the after effects of the op! In the end I thought they might as well do it whilst I was “out” being that historically most examinations for me have been quite painful and traumatic. Having said all that I’m hoping it’ll be for the best in the long run and fingers crossed we are these people who suddenly get minimal pain and light periods! I hope that is helpful and let me know if you have any more questions you want to chat about. Best of luck with your op x

Sez1988- profile image
Sez1988-

Thanks girls for your kind words, and sorry it's took me a day to reply, been so busy sorting the house so I have nothing to do when I get home after the op, and look after the kids in between. Your responses are really appreciated. It sounds so silly for me to say, but it does mean a lot right now!

It's really rubbish all this endometriosis lark isn't it, and the fact it is seemingly irritating my bladder and bowels too, well you know how it is. I also have to have an MRI scan, colonoscopy, and an endoscopy in the next couple of months as well. Not looking forward to those to say the least! Gosh I am so fed up now. I do want a hysterectomy in the end, and if the surgery doesn't help and the Mirena doesn't really help either, I am heading in that direction. I'd rather put up with the menopause and the risks associated with that than all this every week in week out, you have no life. Sylva123, for your low levels of hormones, how did they figure that out, was it a specific blood test?

I was thinking about that with the extra pain too with the Mirena, as I know it does generally cause cramping for a while after with your body adjusting to it, but do they offer prescription pain relief at the hospitals? I had a friend who advised me to ask them to give me something before I leave and tell them I want to feel absolutely no pain at home, so that's my plan and I hope they do! And I am so with you on that EHS2000 with the pain during examinations, it makes you feel terrible, hence why I prefer to have the thing fitted whilst knocked out.

What are the usual after effects of this operation? Did you ladies cope alright with it, and have painkillers for a while?

Anyway sorry for going on, and thank you again! x

Sylva123 profile image
Sylva123

Hi Sez,

With the low hormones they diagnosed it through fertility testing because we're having trouble trying for a baby. I had to take blood tests at different times of the month. Although, weirdly, a doctor prescribed me Provera (synthetic progesterone) back in my early 20s and that helped my crazy periods back then. He'd said I had all the symptoms of estrogen dominance but can't remember much about it now.

When I had my mirenas put in I usually did them at family planning / contraception clinics because they do them all day every day and are swift & it feels just a bit like a smear test with a "pinch" when they put it in. It does make sense to have it done whilst you're out though as it saves the stress of another appointment.

In terms of recovery, I'm recovering from the lap now. They did it at 1pm Monday and I was home in bed by 9pm feeling quite groggy and in a bit of pain once the meds wore off. Yesterday I was just in bed all day watching movies and was taking a lot of nurofen and paracetamol. I did need some help sitting up cos the tummy hurt and needed my husband to do all the cooking etc. I was able to waddle to the loo on my own and move a little. I felt a sort of achey pain inside from the work they did and felt a more spiky pain from the cuts on the tummy. I also had quite low energy.

Today, day 3, I'm home alone and that's ok. Still in bed but feeling more mobile and less pain. Haven't needed to take painkillers yet which is a good sign. My absolute best investment was a hot water bottle with a soft cover. It has been amazing - absolutely amazing - at easing the pain. I've had it between my legs and on my back quite a lot. Definitely recommend that. Good luck. I was beyond terrified and it ended up not as bad as I'd imagined it to be. They signed me off work for two weeks.

Xxx good luck

Sez1988- profile image
Sez1988-

Thanks again, and sorry again for being so slow!

I have a hot water bottle at home with a cover and a big wheat bag so I will make good use of those, thanks for the tip! I have stocked up on paracetamol, ibuprofen, and cocodamol if I really need it though hoping not.

I am currently just in the room waiting to see the consultant to go in for the operation, I'm feeling very shaky and scared but pushing through somehow. I'm terrified I wont wake up from the anaesthetic or something!

I am wondering if it is worth asking for a hormone blood test myself, seeing as I am having a lot of hormonal issues for some time now such as constant dryness down there that can be severe, my breasts are still leaking on and off after stopping breastfeeding 2 and a half years back, just to name a couple. Even my GP has said my hormones seem to be all over the place.

I am sorry to hear about your fertility issues too, are you getting any help with this at the moment? I can imagine that's so upsetting on top of the endometriosis problems.

Thanks again and wish me luck, I think I need it, I just can't stop trembling xx

Sylva123 profile image
Sylva123 in reply to Sez1988-

Sorry, have only just seen this! By now you'll have had your operation and will hopefully be recovering. I hope it went well and hope your recovery is quick. It might be worth asking about a hormone test from your GP. I've known mine were weird for years but only had the "proof" in the blood tests when we started tests for the fertility problems.

Although, your GP might suggest waiting a few months for the Mirena to settle down. That worked like magic on my hormones and made me even out. X

pinktiger33 profile image
pinktiger33

I hope you’re feeling a little more relaxed if you haven’t gone in yet. I had my first lap last week and felt just the same as you I was so nervous! But it really was nothing to worry about at all, you will wake up and not even realise you went to sleep! Try your best to take deep breaths and think about calming things to take your mind off it. Sending lots of love 💛

Sez1988- profile image
Sez1988- in reply to pinktiger33

Thank you pinktiger, it honestly is good to hear other ladies' experiences with this procedure, it's just sad that so many of us are having this endometriosis. I have calmed down a fair bit now, not shaking any more, just very hungry and thirsty!

I have just been told I don't go in until 2pm now, but time has gone quick thankfully. Has your recovery been okay so far? x

pinktiger33 profile image
pinktiger33

Yes that’s almost the worst bit not being able to eat! Only a couple more hours for you then, I passed the time being nosy and watching everything that was going on in the ward haha.

My recovery has been really good - I couldn’t believe how small the incisions are that they make, and they are healing really well. Definitely take it as easy as you can anyway. I’m 9 days post op and feeling better in myself but have another week off work just to really make sure I am well.

I had a mirena coil fitted too. Did you decide to get one fitted?

Sez1988- profile image
Sez1988- in reply to pinktiger33

Hello again

Yeah I've decided to get one fitted, consultant said it's no problem as he's just been to see me. I'm worried now as he says with me having a laparoscopy, cystoscopy to look in my bladder, and mirena all in one there's a chance I might have to stay overnight, as I may not be able to wee at first. God I hope not, I want to go home to my children!

I'm lucky that I have a private room, and my husband is with me, so we just keep having a laugh whilst we wait in between visits from the nurses and that.

pinktiger33 profile image
pinktiger33 in reply to Sez1988-

I had a mirena coil fitted during my lap last week too. It’s taking a while to settle in but I had a copper coil a few years ago and it was the same case with that. They say the initial pain is less if you’ve had children though so fingers crossed for you!

I hope everything went well for you and you’re letting yourself rest and recover 💛

Sez1988- profile image
Sez1988-

Hi ladies so rry I was so out of it yesterday on painkillers, could barely move or think so didn't check this. I am okay with wounds and stuff, but the gas pain from what they pumped in I have been crippled, really agonising and debilitating. Apparently it gets stuck behind your esophagus and causes pain there and in your shoulders and honestly ive not known anything like it. Have to keep moving to shift it but it's so hard with the pain. The op apparently went very well though, diagnosed endometriosis, and adenmyosis (I think that's how you spell it) so god knows what happens now, hes hoping it will be helpful with the mirena there. Also said my bladder looked normal. Had no problems with mirena so far, but still in hospital as I couldn't cope with the pain yesterday and have been on morphine, codeine and paracetamol regularly.

Thanks for thinking of me though I've felt so poorly. xx

You may also like...

To Mirena coil or not to Mirena coil?

your responses have been to the Mirena coil? I've had every NHS recommended contraceptive pill,...

Zoladex or Mirena Coil

or the Mirena coil (with hormones). I had the coil before I knew I had endometriosis, but had it...

Endometriosis, HRT and Mirena coil.

perimenopause and Endometriosis. I have been and still am reluctant to have the coil. Does anyone...

Mirena coil/mini pill

if anyone had any success with mirena or mini pill? Seems all I see are problems being caused with...

Mirena Coil Good & Bad

trying the mirena. Anybody had negative experiences with other pills but joy with the mirena?...