New and looking for advice

Hi all, thank you all for sharing, I've felt a bit lost and unsure about what to do and reading some of your experiences has been really helpful.

I was diagnosed 15 years ago after fertility problems and was so very fortunate to have successful surgery and fall pregnant. I've been symptom free for 13 years.

Now, suddenly I have pain and anemia. I have had a scan and it's confirmed my fears; endometriosis. The doctor said I have many adhesions and I wondered if surgery was the solution. I have a full and happy life and I currently spend too much time with a hot water bottle, dosed up on pain relief, trying to stay awake.

Any advice would be really greafully received.

2 Replies

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  • Hi - treatment for endo, whether surgical or medical, is based on pain and how it impacts your life. Ultimately only you can judge this. But if adhesions can be seen on a scan it suggests they are dense and may indicate deep endo. Once we are talking about deep endo we are then not just talking about pain but whether it may be infiltrating and causing damage to organs or vital structures. You don't say what sort of scan it was but if it was an ultrasound I would suggest that you need an MRI to establish just what is involved so you can use your judgement with regard to surgery. But the recommended guidance would be that if your life is being impacted in a significant way then surgery would be the usual way to go. Options depend on where you are in the UK but preferably in view of how long you have had endo (even though symptom-free for so long it has clearly been progressing) a referral to a specialist BSGE accredited centre would be advisable. I have set up a Facebook support group and all the information you need to follow is in the files section. You may like to join:

    facebook.com/groups/1148144...

  • That's great advice, thank you so much for taking the time to reply. I have joined the Facebook group and am seeking a specialist BSGE centre. I will also request an MRI to see if surgery is the right way to go. I find the prospect of surgery quite terrifying but also the prospect of carrying on terrible too.

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