Thoracic Endo - advice needed

[Pink32]

Hi, I’m currently dealing with Thoracic Endo and could really use some advice from anyone else struggling with it.

I had VATs surgery last year to treat a catamenial pneumothorax, but air still seems to be getting through holes in my diaphragm. My Thoracic surgeon has suggested having more major surgery to try to repair my diaphragm and remove any endometrial tissue.

I’m not sure if I should proceed because a private consultant told me I should also have a gyno specialist in the surgery room to make sure all the tissue is removed and a hepatobiliary surgeon to check the abdominal side of my diaphragm. But I know this holistic approach isn’t possible on the NHS. ☹️

Any thoughts or experiences you could share would be a huge help. Thanks!

[Robin2021]

Hello

Sorry to hear you’ve had to go through all of this… I have Stage IV endo and had a laparoscopy a couple of years ago. The surgeon confirmed that there was “deeply infiltrating” endo on my diaphragm. He was a gynaecological surgeon and he removed as much as possible from the pelvic/bowel region and also the diaphragm but there was some left on the diaphragm that he was unable to remove. He said it would require a thoracic surgeon to be removed in the future.

I’m not ready for more surgery yet but the plan is to have a gynae and thoracic surgeon operate at the same time as I need more work done on the bowel and the diaphragm. I’ll be having the surgery privately in Ireland so having two surgeons is possible but I’m not sure about the NHS. I think it’s more important that a thoracic surgeon operates on the diaphragm than a gynae surgeon doing it alone.

I had a pneumothorax separately during this time but the endo didn’t stop it healing up thankfully.

Hope this helps but sorry I can’t give any other advice…

Take care x

[Pink32 in reply to Robin2021]

Hi Robin2021 , thanks so much for taking the time to reply.

I haven't yet had my appointment to discuss whether I'll need a laparoscopy aswell but it's really helpful to hear about your experience. Was your lap carried out under NHS or did you also go private for this?

Wishing you all the best for when you do decide to have your next surgery x