Just diagnosed

I had my first laparoscopy five days ago (still wearing the sexy surgical stockings!) and have been diagnosed with endometriosis as a result. I'm 30 now, I've had symptoms since I was about 16, and they have been much worse for the last five years. I had anorexia until I was 25 and lost my periods for a couple of years in my early 20s - the pain got really bad about a year after they returned.

I don't really have questions as such, I just wanted to meet more people with endo because I don't know many. I had my operation with the gynae department of the local hospital and the surgeon didn't give me a huge amount of information afterwards (although to be honest I was quite out of it, so might be being slightly unfair to him!). He was very keen on hormonal treatment and didn't really take my concerns about side effects seriously (especially relating to mental health - I already have depression and a low sex drive so am not massively keen on the idea of putting more progesterone in my body). I'm not really sure what to do next - risk the hormones, wait and see if it comes back, ask for a follow up with the gynae department, look for more information from a specialist rather than general gynae? It all seems a bit overwhelming and confusing on top of recovering from my first ever operation!

It's good to find this community anyway :)

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2 Replies

  • Hi & welcome to you, and your stockings! :-)

    I'm sorry to hear you have been diagnosed with endometriosis, did they treat what endo they found though? The best thing I can suggest to you to help your journey is to learn about endo now, so you can take control of your care. This new book is amazing and is perfect for someone newly diagnosed, as unfortunately it's really hard to know which resources on endo can be trusted as many places are not up to date with the latest research. amazon.co.uk/Endo-Patient-S... Sadly many consultants are also not up to date with their knowledge and surgical skills to treat the disease, some of them do seem very keen to force hormones on us, please do your own research and don't take them unless you want to.

    I highly recommend EndoMetropolis which is an excellent educational Endo discussion group on Facebook, with several of the leading endometriosis Specialists involved. facebook.com/groups/endomet...

    Hope your recovery goes well, take care!

  • Thank you so much for replying and for the information, it's very helpful to be pointed towards resources others have found useful :)

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