Endo on lungs?

[Sloany]

Hi

If anyone has thoracic endo, can I ask how it was diagnosed please?

I was diagnosed with stage 4 endo following laparoscopy 2 years ago. It was found on my diaphragm which would explain the near constant right sided shoulder pain I have been experiencing for years, and the breathlessness on climbing the stairs that I used to get when on my period. My gynae is very dismissive of the fact that endo is on my diaphragm and insists that my worsening symptoms must be due to something else, as things didn’t improve when I was on prostap for a year (prostap stopped my periods but I was still having pains in my shoulder, ribs and pelvis)

Anyway, for the past year or so the rib pain is getting worse and I’m getting severe stabbing/cramping/spasming pain in my chest. Not all the time, but when I do it takes my breath away. Been to gp and had ecg etc and all is looking ok. Had an appointment with a chest specialist last week and he confirmed that my symptoms are not pointing to anything else so could be caused by endo getting onto lungs.

I am having a ct scan on my chest in a couple of weeks, but will it pick up endo? What do I do if not?

Any advice would be much appreciated.

[Endosufferer1]

Oh, you can't imagine how happy I AM to read your post!!! Thank you very much!!!💞💞💞♥️ Oh yeah, being breathless when walking up the stairs during your periods. That pain in the chest, ribs shoulders. OMG, I'm not alone!!!!!!!! I don't know if anything will show up but definitely use contrast!How old are you and when did you get your periods for the first thing????? I'm only 24 and never got a surgery done (also took for a year the pill to stop my periods but except from helping me not to faint and vomit, things got worse)!!!!

Did you get pneumothoraxes? Do you have issues when travelling by plane du to the air pressure of the cabin???? Are you sometimes in pain when you sit on your chair (especially when you have periods)? Do you have any cysts? Who are your surgeons, which hospital?

Thank you!!!!!!!!!!!!!!!!!!💕💕💕💕💕💕💕💕❤️❤️💓💓💓💓😍🤩

[Sloany in reply to Endosufferer1]

Thank you for taking the time to reply, and sorry that you are suffering at such a young age!I had cysts on my ovary which was removed along with a fallopian tube during my surgery. I have just turned 50, so fertility isn't an issue!

I haven't had a pneumothorax and haven't had a period for 2 years as I was on prostap for a year and things don't seem to have woken back up yet.

Good luck with getting suitable treatment x

[Endosufferer1 in reply to Sloany]

Thank you for your reply! :-)Were they able to detect your cysts prior to surgery (scans)? To be honest, everything went worse after flying by plane (because of having endo somewhere on the lungs). So, if you can avoid travelling by plane until your surgery is done, I think it would probably be safer (if I knew, I wouldn't have travelled by plane to avoid the pneumothoraxes and endo getting worse). It depends from one person to another but I wasn't lucky this time!

I think I got too much stress (because of having to look after relatives with cancer) + Covid + Uni = atomic 💣 for endo. And the worst part is that because you're young, specialists don't take you seriously and say your body can heal naturally (is a fight to get a surgery and young people with endo will end up with debts because of having to go private).

[Sloany in reply to Endosufferer1]

My cysts were detected on ultrasound(endometriomas)

Sorry to hear of your troubles - stay strong and keep fighting! x

[Endosufferer1 in reply to Sloany]

Thank you! 💕 You, too!!!!❤️

[Endosufferer1]

If you prefer to DM me, just let me know.