IUCD (The Coil) for endo?

Hi guys,

I've had endo for 8 years, I've never had a laparoscopy even though I have asked my doctor many times for one but they never want to give me one.

Every time I go to the doctors though and I've seen a few different ones they always immediately recommend the coil.

I just want to know how other peoples experiences were on the coil because I'm kind of scared. I just want to know if it helped or not and what side effects you guys noticed?

Thanks x

[luthien]

Have you had the diagnostic laparoscopy? as that's the only formal diagnosis for endo. If not you should push for that, difficult I know.

Regarding the coil, there's two types; the standard copper one or the hormone one. The copper coil changes the uterus mucus making implantation difficult, this still allows normal cycles and periods. The hormone coil works similar to hormone (contraceptive) pills, it gives off a steady stream of hormones thus there are no cycles and no periods.

You need to know which one you're having as the standard one has no effect on endo, the hormone one (like mirena etc) do hibernate endo thus helping symptoms in some women.

Many doctors recommend / push for hormones as it delays requiring treatment right away so they can ignore the issue. Inevitably some surgery may be required to actually remove the endo as that's the only way symptoms can be reduced. It will always grow back though but can be managed more so after surgery.

As will IUDs and any medicines there will always be side effects so hopefully some women will let you know what they've gone through xx

I've not had the coil myself so can only give you the facts no experience, sorry.

My specialist went straight for surgery and removal of endo as he was interested in actually sorting my symptoms out - he's an endo / fertility / period problems specialist though, and I did have to fight for years for gps to take me seriously to consider referring me.

[Hidden in reply to luthien]

Hi,

I don't know which one they want to give me, they've given me leaflets explaining both.

As for the laparoscopy I've asked multiple times for one but they simply don't seem to want to give me one, they said there's no point in having surgery just to say "this is what I've got" which to me doesn't make sense as surely it's best to know that I have endo and how bad it is and what areas it's affecting? X

[luthien in reply to Hidden]

which one would you prefer I guess is the one to go with when you've read the info, it's your body so you can decide which to choose, but the hormone one will help your endo, the normal one wont.

Yes what you're saying does make sense, unfortunately it's the medical system at the moment; if they don't diagnose then they don't have to treat it / deal with it so it's not their problem.

I think you can look up the BSGE website and perhaps call up, talk to the secretary and explain your situation; the can see you and look at treatment etc as they're specialists, gps aren't so really won't know what to do other than hormones. The BSGE centers will require a referral which you just talk to your gp / receptionist and say i'd like a referral for my condition to this doctor xx, with the address etc. Then they have to send the details through, hopefully that'll help. We need to push for these things, you shouldn't accept "no" as a response, you want to know what's going on and what to do with your life if you do have a medical condition, so keep pushing.

With endo you can have lots of it and almost no symptoms or very little and lots of symptoms, the symptoms also vary, and how stuff looks inside can be different too. If it is endo, it doesn't go away, it either stays the same or gets worse so you really want to know now...I'm not sure how to push, but deffo research the BSGE clinics.

Sorry I'll stop now!