I'm new to all of this and it scares the ... - Endometriosis UK

Endometriosis UK

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I'm new to all of this and it scares the life out of me! Advice welcomed x


Had a lap on the 18th Feb originally to remove my left tube and ovary as the scans showed a large cyst. Woke up to be told nothings been removed as the cyst they thought they could see was actually a shadow of severe endometriosis! And they started me on the GnRH injections the next day! I feel totally sideswiped by the diagnosis! I need to start learning about my condition and any advice would be gratefully received! x

8 Replies

Hi there poor you I can totally sympathise

this is exactly what happened to me and you are right it is scary when you are dropped a bombshell like this.Are they going to do some treatment lap surgery?

The main thing to rememeber I think is that everyone is very different,different to how the disease effects them and also every one reacts differently to all of the treatments that they will offer(mostly surgery and hormone based treatment)

I found the imformation given on this website the most comprehensive so have a good read of the fact sheets I really recomend that.I had really good gyne to start with who explained loads for me hopefully you will when you have a follow up apppointment.

Dont overload yourself with imfo to begin with Its exhausting thinking about It !!

Take good care of yourself and be kind to yourself I'ts so much to take in at the moment.Best wishes to you.Bxx

Kelly which drug have they put you on right away and did you get the patient advice leaflet for it? And the side effects fully explained too before you commenced treatment?

I had major surgery and was in hosp when I got my 1st GnRH and had absolutely no idea what they put in me till I saw it named on my hosp discharge lettter. I was still so groggy from the op and painrelief that I certainly didn't given any consent, let alone informed consent.

And I'm not alone either.

So I want to be sure you do have the facts for the specific drug you are now on.

That's a starting point as it can be a very roller coastery ride in itself aside from having endo.

Thank you both for your responses it means a lot to not feel totally alone. I must admit I haven't been talked through the side effects of the injections but the hospital did say it was worth starting with for now. I am currently waiting for my first appointment with the consultant to discuss all the options but they did say surgery is likely to happen. Thank you ladies x

Well we have few things in common I had 7cm cysts on both of my ovaries with severe adhesions in my pelvic, but I was put on 6 months of zoladex before my surgery at first they said my case is so severe that I will need 3 surgery to clear all the mess in my stomach. When I went for the 1st surgery which was faster than normal when I woke up they said everything was gone. So you need to learn a lot about endo cos it's really important. Good luck

Hi Kelly :)

I have a banging headache today so will keep this short - have a look on Amazon for a book called "Endometriosis For Dummies" - it'll tell you everything you need to know about endometriosis and then some in a totally clear and non-scary way. I'm 20 years into the disease and still go to it from time to time.

I know it's daunting when you've first been diagnosed, but try not to be too scared. It sounds as if you are in good hands.

Lots of love

C x

Thank you everyone who took the time to offer your support. It means a lot to me x Today is a good day so I'm going to relish it and enjoy every moment while I'm feeling ok! x

Hi I too find myself in the same position, I went in hospital tto get sterilized (for contraceptive reasons, previous dvt and progesterone bleeds with injection and merina coil) I was told after the Op that I have endometriosis and both ovaries and Fallopian tubes are adhered.,to what I don't know. I go back in 6 months to discuss treatment options. I am going.my go tomorrow to hopefully get a better explaination. Anyone else in this situation where hormones are not an.option?

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