Endometriosis UK
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Contraception for longer than 3months

Hi All!

I went to see gynaecologist who thinks I have endo&adesions? He said to try taking my pill for 6months back to back but a lot of things I’m reading seem to say only up to 3 months is safe then you should have a period but he just said to keep taking until I go back in June.

Also this is my first month not taking a break and I feel like I’m on anyway and if anything the pain has felt a little worse at times than if I was on, is this normal?

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It seems to be common that gynaecologists first suggest the pill as an effective treatment of endo. While it stops endo by stopping the hormones that make it spread and thus preventing symptoms it doesn't get rid of endo nor does it reduce it so surgery will still be needed in the future if the outcome is to come off the pill at any point and resume normal cycles symptom / almost symptom free.

The pain while on the pill sounds like it needs to be looked into as that still be the endo or something else. You wont be on a period as a real one because no egg was ever produced, it's just a drop in the hormones when you have your 7 day break that causes the breakthrough bleeding. You can get random spotting while on the pill.

There is little evidence for taking the pill continuously has any problems / has problems however taking the pill increases the risk of DVT and weight gain along with other associated chemical side effects plus IMHO it's not natural to just use chemicals to postpone something that can be treated removed and less symptoms. It's like taking painkillers for recurrent headaches without looking into yourself / health to figure out why you get recurrent headaches - but that's my view.

Will you get your diagnosis in June? Is that possibly why he's suggesting taking them back to back until then? What does he expect to see by June if you have been taking them back to back? Even so when you have your lap for diagnosis, will they be able to see much when its been dormant for a while? Something to ask others on here!

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Hi farahziya thank you for your reply. He said 6moths to see if symptoms have reduced if not I’d have lap or if they were just continue with pill until the time comes I maybe want children.

This is the first time I’ve took it back to back so was just unsure if it was just my body adjusting which was why I was still having pain but talking to some friends who occasionally take it back to back they also get cramping still.

Thanks again

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Symptoms will reduce while on the pill as that's been researched and known about. However what I'd be concerned about is the long term effects of being on the pill from now until / if you decide to have children for 2 reasons:

1. You'll need to stop the pill at some point to have breakthrough bleeds as continuing for years back to back hasn't been researched enough to know the effects plus there are side effects of the pill (with it being a chemical and a hormone anyway). During this time the endo will flare up as your body produces its own hormones in the 7 days you are off the pill - to stop the bleeding.

2. Research has shown it can take up to a year after coming off the pill (long term takers) for fertility to return, during that time the endo may flare up and you may need to deal with that before deciding what to do regarding children. Which by that time you may find that it could be difficult anyway.

I find it odd that this disease / conditions treatment is all based around choices regarding planning for children. What if you really don't know!!

Personally if you're not planning on children, I'd have the laparoscopy to be diagnosed, they'll also be able to see the extent of it all, then take it from there. If it's bad, surgery may put your mind at ease. It'll remove most of it then the pill can help you get on with your life until you decide what you want to do. I think that's better than just putting it aside; I'd want to know what's happening to my insides!

I took the pill back to back for four months, for 10 years. I had all kinds of side effects and still had heavy crampy painful bleeding. The pill caused headaches, dizziness and weight gain. I took it at the advice of the doctor at the time. When I stopped I didn't realise it'd take a while for my cycles to be normal also I didn't know my endo (now diagnosed) is so bad / so many symptoms - it was all over all my organs in my abdomen and my uterus was attached to my bladder and bowel. 8 years after coming off the pill I finally had a diagnosis and still haven't got regular cycles. I've had my first surgery to remove some of it (2nd for bowel still needs to be done) and still having symptoms.

I don't want to put a dampener on it all but I just wanted to be honest and explain my experience.

The decision on what you do is entirely yours remember, not ours, not even the doctors. It's your body, you decide what feels right mentally and physically :)

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I took the pill continuously for 18-24 months before my GP told me to stop. I got a lot of cramping, and a lot of withdrawal bleeding too. I’ve heard some people say theirs settled once their body was used to taking it each day but personally it lasted the full time for me.

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Dee11 thank you for your reply. Makes me a little more reassured you took it longer than 3months but sounds awful you had cramping all the time :( hopefully this settles down because it’s quite bad at the moment I’m even struggling to sleep on my side, for some reason.

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I came off the pill after my lap and on to the coil and I’m in pain 24/7 now so I’m now realising that I would rather go back to the cramping lol.

If it’s your first month not having a break then there is a chance that it is just your body trying to adapt to not having the break it was expecting and the extra hormones, but if it doesn’t settle down after a while it might be worth speaking to your GP. I naively thought because a gynae consultant had been the one to tell me to do it then it should be fine and didn’t speak to my GP about it at all until not long before my lap, when she told me to stop doing it. I also struggle sleeping on my side sometimes, but I’ve started building like a mini pillow fort all down my right side so that if I move in the night it’s protected a bit better x

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Dee11 that’s so awful! Is there nothing they can do for you or do you just stay on the coil?

After seeing the gynaecologist I went to the gp just to explain what was said and why I’d be asking for more contraception but to be honest he just didn’t have a clue when he was referring me he had to look up how to spell endometriosis so maybe I need to try a different doctor or if it’s too bad I’ll just stop and go back to normal until June when I see the gynaecologist again to explain

Thanks :)

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I’m seeing a different consultant now so I’ll be talking to him at my appt in 2 weeks to see if he thinks it’s the coil or just a coincidence, fingers crossed he can hazard a guess at that one!

Oh no 😣 nothing worse than knowing more about Endo than you think your GP does! It might be worth trying it for a little longer if you can bear it, you might get lucky and it could be getting ready to settle down! But we know our bodies better than Doctors do, so if you feel you can’t cope after giving it a go then go back to monthly. Have you had any other symptoms than the cramping? x

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Dee11 oh hopefully they can help you out then!

Erm I feel a little breathless like my hearts beating fast but I do have anxiety and get acid reflux but it’s been quite strong, feel tired sometimes the pain gets worse after I’ve emptied my bladder too

I also find it hard to control my temp don’t physically have a high/low temp but feel chilly one min then sweating the next but I had that before too

x

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I used to find my anxiety could be worse at times as well, especially when I first started taking it continuously rather than monthly so hopefully that should settle down for you soon too.... As if you need anything else adding on to your problems! x

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Haha I know! Thank you Dee11 x

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Hi! I actually have had a great experience on the mini pill. I am on cerelle back to back and have been for around 7 months now. It has SIGNIFICANTLY reduced my pain levels! I always have aches in my back and hips, but the blindingly painful cramps I had before cerrelle have stopped and I can function on a more normal level now which is GREAT.

That being said, I am intending to have a laparoscopy to remove my endo. The cerrellle seems to be reducing the pain and the slowing the progression of my pain (prior to taking cerrelle my pain increased dramatically over 6 months, every period was significantly worse), BUT the deposits of endo I already have are still there and still aching away.

So I feel like it's good to take whilst waiting for your lap, but in my opinion, get the endo chopped out!! ☺️ My gynae said taking the pill back to back is ideal to stop my periods, as this seemed to be when the pain increased.

Hope that helps!! Xx

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Thank you Emiilykatex glad that’s helped with your symptoms!

I have to wait for this 6months to see how the pill helps which I guess I’ll just continue with if it does eventually help but if not i have Lap but like you say it’s Just suppressing it not reducing it or making it go away if he won’t do lap i might ask for an MRI as he said he would probably do that before a lap anyway as they don’t like operating as it can sometimes cause more harm x

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