Anyone been diagnosed with thoracic endo?

Hello, so I was diagnosed with endo when I was like 13. I'm now in my 30s and have had on going health issues around my chest. I have asthma but my chest - pain, breathlessness, fatigue sometimes a cough seems to get worse (especially the pain, it's excruciating) around my cycle so a week before, particularly during etc. I was wondering whether anyone else has had the experience and a diagnosis of thoracic endo as it seems under diagnosed. If so whether it is worth me bringing it up to my thoracic consultant? Cheers.

[Supertedscrappy]

hi there, I have exactly the same symptoms, endo, asthma, shoulder, chest, they looked for thoracic on my last surgery but couldn’t find any. I’ve just seen a rheumatologist who thinks it is fibromyalgia, chronic pain which exacerbates when the endo and my back issues flare up

[Endosufferer1 in reply to Supertedscrappy]

Was the surgery done by a specialist of endometriosis?

[Supertedscrappy in reply to Endosufferer1]

Hello yes it was done at an Endo specialist unit, I have also had some removed from the diaphragm before, but basically they have a team for all the variances of endo, knew in advance to search for it and looked everywhere possible. I trusted them implicitly.

[Endosufferer1]

Yes and even diaphragmatic endometriosis!

[Hidden in reply to Endosufferer1]

So did you get your diagnosed only from them finding via surgery?

[Endosufferer1 in reply to Hidden]

Diagnosed first based on symptoms (catamenial pneumothorax but also other symptoms...). Waiting for a surgery!

[Robin2021]

Hello

I have Stage IV endo and had a laparoscopy a couple of years ago and the surgeon confirmed that there was “deeply infiltrating” endo on my diaphragm. He removed as much as possible and though the pain didn’t fully go away, it was so much better. I remember the pain as being so much worse at night-painkillers would help but never fully stop the pain… For me the biggest sign was shoulder pain-not sure if you have this? Incidentally I had a benign tumour in my chest which was removed by a separate surgery and the doctors have said the two issues aren’t related-I had a bad cough and breathlessness with that…

I had a gynaecological surgeon who was able to remove most of the endo on my diaphragm but that there was some left that he was unable to remove and may require a thoracic surgeon to be involved if it needed to be removed in the future or if it became worse etc.

Hope this helps!