Lap and coil, but I don’t want coil!! - Endometriosis UK

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Lap and coil, but I don’t want coil!!

HettySpaghetti profile image
14 Replies

Hello, I’m new to this forum and new to the thought of having Endo. I’ve been told I have had IBS all my life. I have been to the gyno and he wants to do a lap and fit a coil. I have not heard anything good about the coil and have heard so many accounts of how painful they are to be removed. I had an exam at the gyno and bled heavily for a week so I dread the thought of this. I’m positively phobic about being messed with down there. Any advice???

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HettySpaghetti
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14 Replies

Hi I refused the coil too if you don't want it don't have it, it's your body so you can decide what to do!!

HettySpaghetti profile image
HettySpaghetti in reply to

May I ask why? I am sick of being in pain and I don’t want more. I couldn’t cope. My exam the other day was so painful I nearly squeezed the nurses fingers off! That was just for an exam and biopsy. I bled so heavy for a week too. I think he shocked me into my period. It has to be removed after 5 years and I’ve heard personal horror stories of how awful it is. So scared:

in reply toHettySpaghetti

I also had heard bad things about the coil and my gyno didn't recommend it either, because I was worried about side effects too so she said the coil won't be a good choice. Oh god so awful sorry to hear that!! I know how you feel it's the worse pain! Will this be your first lap?

HettySpaghetti profile image
HettySpaghetti

I should add that I’m 45 and lived with this for so long, I’m scared to make it worse.

Lulububs profile image
Lulububs

I am 43 and had my lap 10 weeks ago and 4 times in the meeting just before op she tried to tell me i should have coil fitted to. At first i was polite after 3rd time i told her in no uncertain terms if i woke up with coil id sue them!!!

Didnt want it and i wont b falsed into it and neither should u.

We suffer enough i do not want things up there ive also got to worry about.

Dont worry about lap though it not that bad.

Fabbird profile image
Fabbird

Hi, just to add that some of us have had really good experiences with the Mirena. Look up past posts and you find them too.

Seems to be more troublesome if you've not had kids. When I had my first one it was tricky at first, but it has given me so much of my life back since. So worth looking into all perspectives. Good luck with the lap.

Starry profile image
Starry

I had mine removed after 5 months and it wasn't painful for more than a split second. Take a couple of paracetamol before and you'd be fine.

It is completely your body, your decision, but fwiw I think it's usually worth a go, because it does work really well for some. And people tend to shout about negative experiences not positive ones. Like all hormone treatments it takes a good 3-6 months to settle and i think gets a bad rep because people don't give it long enough. I was told by my surgeon statistically it has a 60% success rate.

I tried it for 5 months. I bled heavily for 6 weeks solid ( this is your lining shedding and is normal) which was horrid and i needed iron supplements, but then my periods stopped. Completely. Bliss. I was left with a mild niggly pelvic pain. Unfortunately it persisted so the Mirena didn't settle down quite right with me probably because I had had painful ovary treatment in the op when it was inserted. Even so It's the closest thing to working I came across. Ultimately my endo was 30 years or more old, grade 4 deep infiltrating type and hormone resistant.

HettySpaghetti profile image
HettySpaghetti in reply toStarry

I’ve had symptoms for 30 years. They said it was IBS And ignored the gyno aspects.

Starry profile image
Starry in reply toHettySpaghetti

Hey Betty, I'm 43 so a similar age, and lived with Endo ( unknowingly) a similar time from the sound of it.

If it's any help i tried zoladex too and wouldn't reccommend anyone touch that with a barge pole with side effects and longer term risks. Its after effects lasted months. But I was back to normal within 7 days after removal of the Mirena, all it cost me was time, but I needed that time to discover medical options were not a viable option for me to be able to mentally accept undergoing the extensive surgery I had to face.

But you may be in a different place altogether and no hormone treatment is particularly pleasant or appealing, it's a very individual game of symptom v side effects trade offs. I may have developed low mood on the Mirena I think, but as it overlapped with the zoladex its hard to say for sure which was the culprit.

Good luck in whatever you decide. Xxx

I'm about to have a lap and be part of a trial where I might find I have one in when I wake up, which is someting I didn't really want but agreed to if it helps. My mum keeps telling me she's had one for 3 years and had no issues but me and my sister find the idea of it pretty grim, and I'm terrified of it hurting being in there because I have vaginismus and the pain is deep inside anyway! If you have a choice to not have it, and thats what you want, then I'd take it x

cmbxm profile image
cmbxm

I refused the coil when I had my lap yesterday and they were fine with it! It's Your choice at the end of the day!

C2691 profile image
C2691

Hi, I had my pre op yesterday and also told them I do not want the coil as they have recommended. She was fine with it and just said that although that’s her advice it’s not for everyone. I know it works wonders for some people but I just feel like I know how my body reacts to various pills I’m not prepared to find out it reacts badly to the coil as well! My GP tried to get me to have the coil for ages before I even got referred to gynaecology but I’ve always refused. Good luck with your lap 😊

Emma5397 profile image
Emma5397

I had the coil out in when I had the laparoscopy, after 9months of it I had to have it taken out as it didn't help me. It's your body, if you don't want it then don't have it xx

deedeeme profile image
deedeeme

I don't want to scare you but my daughter was diagnosed with IBS but it turned out that it was neuroendocrine cancer. Not many doctors know that the symptoms are the same. Hugs.

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