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Endometriosis UK
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Coil is it worth it

Hi Ladies, I had the coil fitted at my lap back in October. I’ve had no benefit so far from either still in daily pain, been bleeding (not too heavy) since the lap. I had hoped I would get some relief from both they found and removed the endo and adhesions. My option is left side removed then full hysterectomy if that doesn’t help, they’re first option is the hysterectomy

I saw my gynaecologist for a follow up and she’s asked me to give the coil 6 months to settle but I’m in so much pain and I’m really getting down with it I’m at the point I’m going to agree to the hysterectomy they want to do because of the pain. I So want to enjoy Christmas and not been in pain for even 1 day.

Has anyone else had the coil fitted and the pain and bleeding settled?

Thanks

Michelle

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Hi I’ve got the Mirena coil for nearly 2 years now and I have found it doesn’t help me at all I have just seen a specialist and he told me that he isn’t for a hysterectomy as they just take the uterus out and there is still a chance of having endo he is now wanting me to start Decapeptyl injections with hrt I should say I’ve tried lots of other things before but nothing has worked yet so hopefully this will work for me

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Thanks for replying.

My specialist is pushing for a full hysterectomy, he said he would only recommend full hysterectomy though as leaving anything else in would give me the same pain. I tried the decopeptyl injections in Feb with Tibolone HRT, I had terrible side effects so came off them. I am thinking about trying them again as maybe I’m in the right head space this time. They only sprung the hysterectomy on me in the Jan, so was to try the injections first.

I have another uterus and pelvic scan this week, not sure what’s it’s going to show though so feel it’s probably a waste of time.

I hope the injections work for you, they seem to for lots of people, fingers crossed something has got to work xx

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If you don’t mind me asking what side effects did you get from the injections? I’m a bit worried to start them as I’ve tried so many things now and nothing has worked so far i got diagnosed when I was 19 I’m 28 now.

I really hope something works for you I know how frustrating this can be one thing I find takes the pain away for a little while is tramadol but cause they are so addictive they don’t like given them out I tend to only take them if the pain is really bad and that seems to give me a little relieve at the time.x

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My personal experience was severe anxiety, I honestly just felt I couldn’t cope mentally. I had no benefits from the pain either but I only managed 1 injection my doctor refused to go any further with the treatment due to my state. It took me months to get back to myself, they even gave me anti depressants but I managed to get passed it without needing them.

I’m not sure if I just want ready due to the hysterectomy question so that may have played on my mind more than I thought. I’m willing to give them another try if I don’t have anymore options. Yeah I’m 39, had this since I was young but just didn’t get a diagnosis on it until 5 years ago. Tried lots but nothing works. I’m not good on Tramadol and I can’t sleep on it. I’m on dihydracodeine and Paracetamol, been trying to cut back but it’s hard as I’m in so much pain. Spoken to the doctor about it and he’s in agreement it would be good to stop them but he doesn’t think it’s going to happen anytime soon.

Hope it’s better for you xx

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Hi, I had a coil fitted during my lap in September and I’m the same as you. Like before my lap my pain was just before my period during and like a day or two after, but since my lap and the coil I’m in pain 24/7 and bleeding more then I use too.

I think we trust doctors too much, because they r doctors and r ment to no what they r talking about but the coil has done nothing for me at all. Xx

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Hi, just not sure how long to try this for, they’ve advised 6 months and I don’t have any other options until a new surgery date. I’m always in pain 24/7 but this is additional pain along with constant bleeding. Think if I could get a break from the bleeding it would help see what the pain was like.

Hope your pain settles down too cx

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Yeah I’m in completely the same boat as you. My next appointment with a specialist is in February so I’m kinda like I will just carry on till then I guess but the pain is all the time and I don’t think I have done a full week at work since my op I’m always having to ring in sick and hate it. Xx

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That’s not good your having so much time off. My job is desk bound mostly and just get doped up with painkillers once I’m in and they get me through the day with heat pads, I’ve managed without anymore time off since my op. I’ve had a few holidays and been off with my daughter being ill so think those days have helped a bit. I’m on the sofa all day Fri, Sat and Sun though as luckily I’m only working 4 days per week, that def helps.

Let’s hope the pain etc settles down for us to enjoy Christmas xx

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Hi, sorry to hear you’re having such a bad time.

The Mirena coil has worked for me. I did get a lot of pain for the first few months. I also questioned whether to continue. I decided to give it six months because the alternatives were pretty awful.

After about 3 months I had no more pain than before the coil. By 6 months I was just about pain free. I’m now on my fifth coil because they seem to run out after 2.5-3 years. I’m virtually pain free and my endo has retreated so much I’ve never needed surgery.

Changing them is much easier - only a day or so of pain.

My experience is that it’s worth persevering, but I know others find it never settles. It seems very variable.

Good luck.

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Thanks for your advice. Doc has asked me to give it 6 months and knowing it’s worked for someone with the same issues, pain etc is very helpful and reassuring. Think just not knowing what to do or making your pain worse for months with no benefit is the biggest issue, we are all in so much pain and the alternatives just seem to make the symptoms worse and let’s be honest 6 months in agony and bleeding constantly to maybe get some relief it’s a big gamble but we just don’t have many options do we.

Thanks so much xx

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