Appointment today: hey all I had another... - Endometriosis UK

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Appointment today

Paigelouisex profile image
5 Replies

hey all

I had another gyni appt today.. he’s booked me in for keyhole, a camera in my womb, dye test and few other things and to also put a coil in.. he said if the coil doesn’t work the only thing left is a hysterectomy 💔. I’m only 20 and don’t have any children yet and I want them more than anything.

Has anyone had any success with the coil? and once it’s taken out have you gone on to have children?

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Paigelouisex profile image
Paigelouisex
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ali_cupcake profile image
ali_cupcake

Hey,

I really hope for you that the operation goes well and you get the best possible treatment. He’s sounds like he’s being very thorough! There are more options than the coil. I am 17 and am 17 days post first laparoscopy where they diagnosed stage 3 Endometriosis. I was told the same on the NHS that the coil was the only option and if it didn’t work I’d need to prepare myself for the event of needing a hysterectomy before the age of 18. Due to various reasons I went privately instead and spoke to my surgeon about what I’d previously been told. She said that was absolute rubbish and that there are other solutions to help stop periods which helps prevent Endometriosis growing. The other methods she told me were: the contraceptive injection (Depo-Provera), the contraceptive implant (Nexplanon) it’s not an IUD but similar and the stick on patch (Xulane). I’m gathering you have tried at least 5 different types of pills as my private consultant said there’s such a wide variety only a few maybe the best so you have to try as many as possible.

During my surgery I had the mirena coil fitted. So far it’s amazing, I haven’t bled! I’ve had pain and discomfort but it can take up to 10 weeks for your body to get used to it and for it to settle in your womb.

I understand the terrifying thought of not being able to have your own children. Even being diagnosed and told that it shouldn’t effect me by an expert still worries me. Its still a worry and thought as I’ve always wanted to be a mum ever since I was young and I want it so badly. Remember there are amazing people and medicines out there now that can help even more people have children. IVF has advanced and the chance of conceiving with IVF is higher than it was 20 years ago.

I really do wish you the best of luck and I really hope it goes well. I hope you feel reassured as much as possible. Remember you’re not alone xx

Paigelouisex profile image
Paigelouisex

Thank you for your reply!

How long did it take you to recover from the lap? Also have they told you what will happen when the coil is removed? Will you then go on to have children or will the bleeding jus start again?

My problem is my period just doesn’t stop! I’ve been on (this time) since 30th April. I’ve been taking the pill, northistone, mefademic & trexademic acid and nothing will stop the bleeding which is why i’m worried the coil won’t have any affect at all 😔 xx

ali_cupcake profile image
ali_cupcake in reply toPaigelouisex

It’s okay!

I’m still recovering, I only had the lap a week and a bit ago. Since then I’ve been back in hospital too because I got an mild infection but I’m all good now and definitely on my way. My consultant said between 4-6 weeks but it varies for everyone. People forget it’s major surgery and you might as well have a massive scar on your tummy to represent what they’ve done inside!

I will have the coil changed in 5 years. I’ll be 22 then so I’ll just have it refitted as I think I’ll be too young and not in a financial position to have a child. It also depends if I’m with anyone!

My period never ever stopped. I’d bleed for 3 weeks straight and then stop for like 4 days and then start bleeding again. It’s horrible. It drained me, I had no energy and I was in pain constantly. I was in a similar situation to you taking Naproxen, trexademic acid and the progestogen only pill. I did try mefademic acid however it made me extremely sick.

Since having the coil it’s changed my life, I’ve had spotting but other than that I haven’t bled. I haven’t bled like I did previously. I’m no longer in pain, I feel so much better and I just feel like me again! I don’t want to give you too much hope but I really do hope that it works for you. If it doesn’t consider discussing the other options with your consultant that I suggested. Good luck! Xx

Peebles2sarah profile image
Peebles2sarah

DO NOT GET A HYSTERECTOMY!! Please! He is not correct in saying this is your only option or even an option at all. Hysterectomy does not cure endo. It can still come back and hysterectomy has very negative side effects. A good endo specialist would NEVER advise this, especially to a 20 year old. Do not listen to this doctor and please do your own research. You will quickly learn that it is not a good option for you. Advocate for yourself and be informed. Good luck xx

Paigelouisex profile image
Paigelouisex

Just an update... been told it’s a 10 month wait for the op 😔. Pains are unbearable and been on my period for 28 days now 😫😫😫

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