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Endometriosis UK
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Scared - difficulty breathing

Every time I get my period I have intense breathing difficulty/ occasionally pain in my upper right back, pain in shoulders/ neck. This month it is worse than ever.

I have not yet been diagnosed (have my pre-op on Thursday) but am scared that if it is endo, that it has reached my diaphragm/ lungs, and am absolutely terrified.

Can anyone give me any advice, can this be rectified? Finding it hard to cope today, I have bad health anxiety anyway.


2 Replies

Hi - endo on the diaphragm is complex and the BSGE specification for severe endo requires that it is excised but in practice few specialists have the skills to actually do it so you would need to find a BSGE surgeon with the required skills working with a thoracic surgeon. But also note that diagnosing it isn't straightforward as it requires an additional port (laparoscopic access point) that is unlikely to be used in general gynaecology and an expert eye. Click on my name and have a look at my post on the diagnostic lap to see what they should be doing but you want to be sure they don't touch anything severe or complex. I think you will need referral to a centre in any event.


Thank you for your advice. I saw an out of hours doctor this evening after panicking, and she had never heard of either endo on the diaphragm or the BSGE, but has said she will draw up a template letter for a referral which she has sent to my normal GP (I didn't go via them as waiting list to see my GP is currently 4-6 weeks) - she has suggested I go and see them and they can complete the referral, and that I cancel my pre-op with the NHS this Thursday.

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