The pill or coil: I have suspected endo but... - Endometriosis UK

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The pill or coil

Button11 profile image
9 Replies

I have suspected endo but nothing confirmed as they don’t want to operate with me being only 25 and not near having children yet but I was told to take my combined pill back to back for 6months which I have done but I’ve still had a lot of pain and greater intolerances to food like dairy and gluten.

I went back to see a different gynaecologist and she wasn’t even really interested in how I’d got on she was just ready to insert the coil (having two nurses in the room ready to go!) this made me really nervous and I said I want to think about it first as I’ve read not great things about the coil so she gave me a leaflet and off I went.

So now i feel a bit stuck stick with the pill or have the coil?

Also I don’t even 100% know if it is endo as I thought the pill continuously would have helped ?

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9 Replies
NW248 profile image
NW248

I can't see the combined pill helping endo as it has oestrogen in it. Or to be precise, it would help the endo grow and wouldn't help you. If it is the Mirena coil they are proposing, that doesn't contain oestrogen.

Also, not that you don't need an operation to diagnose endo, an MRI also shows it up. Try pushing for one of those and if your consultant doesn't even know this is an option, I suggest you ask to be referred to a endo specialist.

Button11 profile image
Button11 in reply to NW248

NW248 thank you for your reply. I thought exactly the same about the pill but the gynaecologist said it didn’t as I asked about progesterone only pill but he said it makes no difference.

I’m being sent for an ultrasound instead and now have to wait until January to see the gynaecologist again when I could ask for MRI

NW248 profile image
NW248 in reply to Button11

Why the wait until January? An ultrasound may show other things that are wrong but it is highly unlikely that it will show up endo. My experience was having repeated ultrasounds where they diagnosed fluid in my fallopian tube but said that wasn't a problem and insisted that the ultrasound showed that nothing else could be wrong with me. Insist on your GP referring you to an endo specialist as they will know an MRI is better for diagnosis.

If you intend having children, you need to know where you stand and if it is endo you need the correct treatment early.

Button11 profile image
Button11

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Thank you for your reply I’ve been to see gp today to talk about the coil and she has given me a progesterone only pill to try first because I was nervous of the coil so we’ll see how it goes and I’ll try and get an MRI at least that’s a start

kelsbels88 profile image
kelsbels88

Hi,

I’m slightly older than you but I would say that having my diagnosis definitely gave me some closure, sadly mine was made due to infertility and trying for 2yrs with no success.

My understanding is that the only real way to diagnose is to have laparoscopic surgery, (although have heard stories of other ways - they aren’t conclusive) and 9/10 times they still had to operate to confirm. Good luck and keep pushing is my advise as they didn’t want to operate on me and eventually had no choice due to my pain levels.

Also I was on the combined pill and although I still had cramps they were manageable (no medication needed) and that was all I had as symptoms nothing compared to what I suffer with now due to stopping 2yrs ago.

Lots of luck Kelly xx

Button11 profile image
Button11 in reply to kelsbels88

Thank you for your reply. I think that’s my problem, I’m just wanting some kind of diagnosis even if it’s not endo because I’m being told to try these things and I don’t even know what the cause is!

So sorry you haven’t been able to conceive I hope something can be worked out for you x

kelsbels88 profile image
kelsbels88 in reply to Button11

Your welcome.

The worst part for me was that I literally didn’t know what was going on - I just had all these symptoms that they kept telling me we’re something else. First it’s just heavy periods then it was a stomach problem then it was maybe pcos I just got fed up in the end I search my own symptoms found the forum and thought too many ppl have symptoms like me. Keep pushing you know your body better than they do and pain is not normal.

Thank you we have our first appointment for ivf consultation on 20th July so fingers crossed. Hear if you ever need an ear xx

CJessicaD profile image
CJessicaD

Hi I’m young also, only 22, and recently diagnosed with endo. All the consultants/gynae’s/doctors/nurses have all always said that the only way to confirm endometriosis is by surgery. The surgery is relatively low risk... I was never told my fertility would be affect. However leaving endo to grow further can cause more damage to your fertility.

CJessicaD profile image
CJessicaD in reply to CJessicaD

From what I’ve been told, ultrasounds cannot detect endo but can detect whether you have any cysts. In my case they found an ovarian cyst which is a sign of endo. I then had to have surgery to confirm it! Even then my consultant was amazed to see how much endometriosis I had in my pelvis as previously they still didn’t believe I had it. I would push for surgery if you believe you have it because there’s no other way to confirm it! Xxx

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