dineogest & mirena coil

[Markie16]

I’m in a bit of a predicament & I understand asking for advice on here isn’t exactly medical professionals but hoping to hear other’s experiences to help give me the answers.

I’ve been diagnosed with stage 4 endo for 5 years, after a long journey I managed to conceive my daughter - pregnancy definitely gave me a slight rest bite from endo symptoms however my periods returned after 3 months PP. anyway long story short my endo in the last year has never been so bad so last August I was put on the mirena coil again my consultant sadly retired & I’ve been put with a general gyne who has said she isn’t really equipped for dealing with this as it’s not her specialty. However she gave me 2mg dineogest back in March & as much as I don’t like the side affects and my pain is still daily it’s definitely not as horrific however I have still been bleeding since taking it. I tried to talk to my GP about how I feel on the medication they said they can’t discuss it as it’s red on the formulary so to speak to gyne, rang my gyne’s secretary and she said I can’t get an appointment until July & she can’t answer my questions. Now not only that it states very clearly where ever you look so NOT take dineogest whilst on any other contraception including the coil…. Yet I’m on the coil?!

The question is, has anyone had both before?! The GP has booked me in for coil removal but I’m nervous that il have to have it back in when I see the Dr in July & it’s not pleasant to have in. Everytime i stop dineogest my bleeding & pain gets instantly worse. Dineogest was specifically created for endo so I feel long term it might be better than the coil?!

What to do 😫

[Jojams]

Hi Markie16 I'm sorry to hear that you are suffering with endo symptoms.I would suggest asking for a referral to a specialist endometriosis treatment centre as this is recommended by NICE and they will be better trained to treat your condition.

On a personal note I have endometriosis and have previously had a large endometrioma (cyst) removed from my ovary. I am currently on both the Mirena coil and desogestrel which is another progesterone only pill (like Dineogest) and have been for over four years.

I tried stopping the desogestrel about a year ago thinking that I would see if my symptoms could be managed by the Mirena alone but my bleeding increased again (whereas on both methods I have some degree of light bleeding from time to time but no regular periods) so resumed taking it. My understanding as a patient is that if used for management of endometriosis and tolerated by the individual, both are okay together.

[Markie16 in reply to Jojams]

Thank you so much for taking the time to reply. As my specialist retired I am awaiting my appointment with a new endo specialist based in Cambridge, appt is July. I sadly have endometrioma’s on both ovaries now they’ve multiplied in numbers in the last year despite the coil. I was on the same pill as you last year I was actually advised to double dose it but I can’t say my body agreed. Dineogest apparently is a fourth generation progesterone & isn’t a contraceptive. I’m confused as everywhere states it can’t be taken with the coil & I don’t think my body likes all the progesterone!

[CathyEarnshaw]

Hi, I’m so sorry you’re going through this, it’s so tough. Finding professionals who can help is far more difficult than it should be.

I don’t have experience with the coil (I refuse to have it) but I do take dienogest in a combined oral contraceptive pill (Qlaira). The dosage of dienogest is 2-3mg depending on the day of the cycle, but it’s combined with oestrogen to help reduce bleeding. After trying multiple pills, including double dose desogestrel, this is the only one that’s worked for me and stopped my horrendous bleeding. Not sure if the combined pill is suitable for you, but if it is, might be worth asking.

I hope you find a solution soon! x

[Markie16 in reply to CathyEarnshaw]

Thank you so much, it’s so difficult & not having anyone who I can ask such questions when needing a medical answer is so hard! I’ve decided to have the coil out and give dineogest a go as it’s specifically made for endometriosis & I haven’t had the best experience this time round with the coil. Hopefully my appointment in July with a specialist sheds some more light x

[Branflake2000]

Almost every hormone treatment for endometriosis is a type of progesterone, and they can be stacked if necessary. If one isn’t a licensed contraceptive, they can’t allow you to use it as one - even though it will basically function as one.

So, if one of the licensed contraceptives doesn’t work for endo on its own, another is often added in, but you have to stay on the other one “as a contraceptive”. So you can end up with Mirena plus Provera, implant plus noristhisterone, mini pill but topped up with diogest and so on.

All of these are doing the same kind of thing, with slightly different side effects, but despite what the leaflet says there really isn’t much risk because if you can tolerate the side effects all progesterones are pretty safe

[Markie16 in reply to Branflake2000]

This is really informative thank you, the reason I came across the note about not using in junction with any other contraception is because I was seeking advice on my symptoms. My body never has & never probably will cope with the symptoms of stacked progesterone so I have decided I want to give dineogest a real go & take out my coil as looking back the coil hasn’t worked well this time round anyway! But thank you SO much this was super helpful & reassuring