recently diagnosed: hi ladies Recently had... - Endometriosis UK

Endometriosis UK

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recently diagnosed

Bondi64 profile image
10 Replies

hi ladies

Recently had an mri which showed stage 4 endo

Ive been given options to try the pill back to back for 3 months to see how that manages the pain before another consultation

Surgery was mentioned and ‘due to my age of 38’ it was referenced quite a bit that surgery might give me ‘that small window of time’ to consider kids

ive never been that bothered by having kids but was nice to have the option, being single im not in that position to really make that decision so confused what to do

keen to hear from women on both sides- those who didnt opt for surgery abd just pain manage and anyone that has laparoscopy surgery

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Bondi64 profile image
Bondi64
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Lindle profile image
Lindle

Are you in the UK?

Bondi64 profile image
Bondi64 in reply to Lindle

Yes i am

Lindle profile image
Lindle in reply to Bondi64

Which country as treatment pathways vary.

Bondi64 profile image
Bondi64 in reply to Lindle

Which country or county? Country- UK

Lindle profile image
Lindle in reply to Bondi64

Country, so England or one of the devolved boards. And was the MRI done in general gynaecology or in a specialist endo centre?

I'm in the UK. I've not actually really been given the option of surgery. There was talk of it, but it could get messy. I didn't want to go back on the pill, but the pain was so bad during my period that I decided that it was my only option to manage the pain. I have it for 3 months and then a 1 week break. This way I have less periods and atm, less chance of pain. It also means I have less time off work. I am 35 and I have no children.

Bondi64 profile image
Bondi64 in reply to EternalSunshine87

Yes my doctor also mention that, only 4 periods a year and do back to back pill. Think i have to see how the next 3 months go and if pain is eliminated… then see what happens next. Lots of questions in my head that needs answers before surgery

ZebraZone profile image
ZebraZone in reply to Bondi64

There’s literally no reason not to take the pill without breaks. It’s been proven that there are no ill effects from this. Plenty of people have been doing it for years. This is why I don’t trust doctors they don’t even keep up to date with this type of stuff.

Emmaja_ne profile image
Emmaja_ne

I’m currently waiting for a diagnosis but I have been told to take the pill back to back while I’m waiting and I do feel it’s made a difference to my symptoms. Mainly stopped the almost fainting on the loo due to pain during my period. Hoping to hear from gynaecology and colorectal team soon 🤞 hope you feel better soon x

Stitchrunner1 profile image
Stitchrunner1

First things first. Pain relief and mess control. If you take the less permanent choice, you get a chance to see if it works. Job done. If it doesn't work then, ask yourself this: "can I manage the pain and mess? You might be able to use pain relief, strong sanitary protection and a pill or depot injection. (my daughter can do this successfully, I couldn't) Do not under any circumstance, let the doctors play the " you might want children" card. That is your decision alone. You are old enough to make your own choice. Listen to your instincts, they know you better than the doctors. Never be afraid of your own decisions. Never, let anyone rush you into a choice. Once you have weighed up your life options and made a decision, only you are allowed to change your mind, until of course it is permanent . Write down the reasons for your choices in a little book and keep it safe. Then if you ever start to regret look into the book and see why you made the choice you did. You will then realise' you were right at the time. Also, please, on the point of begging you, do not let anyone, friends or family, stick their elbow in. They all have their own agendas and none of them are yours. If you are like me, you come out of the doctor's surgery in a state of terror, with a mind whizzing like a helicopter blade. Make your choice after the helicopter blades have stopped rotating. In short, listen to your own instinct, make your choice, dam everyone else's opinion, (mine include) and remember, you can live with regret, it is not terminal.

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