Anyone veen diagnosed with endo on diaphragm? If so what are the symptoms?

[Thecrazypugglelady]

So ive had a hysterectomy but suffered beforehand with coughing up blood sickness and a catching feeling by right rib alongside the other symptoms. When I had my hysterectomy I had endo all over pelvis, bowel and masses in my stomach wall. But they couldn't check inside bowel or any further time wise.

It was going well until my bowels have started playing up and Ive noticed its lumpy and sore where the pain is and my chest has gotten worse along with numbness in shoulders, kidney pain (I got prior to surgery) and this catching feeling if im putting shoes on etc aswel as my sickness is back! I only have stabbing pains in my kidney area though 😕

Just wondering if anyone had thoratic endometriosis? If so what are the symptoms?

[plotments]

HiI haven't been officially diagnosed with diaphragm endo but my consultant thinks I might have some endo on my diaphragm because of symptoms....right rib/shoulder pain, cough when on period. I don't cough up blood but get a very metallic taste in mouth. I'm currently waiting for a complete hysterectomy with removal of bowel endo.

Do you find your symptoms are still cyclical even though you've had a hysterectomy?

[Thecrazypugglelady in reply to plotments]

Thanks for replying. That does sound tge same 😒 its never ending

Yes pretty much but the rib pain is getting worse especially when I go for a walk or lift. However the I couldn't walk before I can now so that side of things is better and had no choice. When they went in they said everything was just covered. I can't moan too much I suppose Im very grateful I can walk just very annoying that probably have to have yet more surgery.

It sounds like you have a good consultant. Have you got much of a wait?

[plotments in reply to Thecrazypugglelady]

The pain does get worse when your more active, heavy feeling, forgot to the mention the breathlessness, that's getting worse with every period. I've not long had an MRI waiting for MDT, no idea how long it will be before op. Things are getting beyond ridiculous .....on so many pain killers now!!Glad to hear your a bit more mobile now.

Have you spoken to your consultant

[Dogmad6]

I get terrible chest pain and it's much worse leaning forward in any way. I like to lean back and would struggle to sit without back support. I get pain on the right side of my chest only, very debilitating. It's cyclical and hurts to talk for any length of time when it's playing up. It feels hot and constricting. I definitely have Endometriosis on the diaphragm. Hope this helps.

The pain seems to be in a similar place to where you'd have pain from gallstones but I don't have those. I hope this helps. I've never coughed up blood although I have heard some people do. xx

[Thecrazypugglelady in reply to Dogmad6]

Thank you for replying. Yrs this helps a lot thank you. Yes it is! Only not stabbing pains so can't be gallstones just feels stuck or like a stitch.

Yes sometimes if im reading or singing I have to stop

Did you have trouble getting it diagnosed?

[Dogmad6 in reply to Thecrazypugglelady]

No I didn't have any problems getting it diagnosed. My symptoms were classic and believed. Yes it isn't stabbing pain in my case either, just so constricting like everything is stuck and makes me exhausted and sometimes breathless. xx

[Thecrazypugglelady in reply to Dogmad6]

Yes thats what it feels like! Thank you for your help. Thats good make life so much easier! I probably will have trouble my doctors are amazing and refered me back on urgent but consultants may be tough just don't want to repeat every test under the sun🤣

[Dogmad6 in reply to Thecrazypugglelady]

Hope you get the help you need instead of being fobbed off with irrelevant tests. xx

[Badger17]

Hi, during my laparoscopy they found endo on my diaphragm but the surgeon left it there because he ‘wasn’t experienced enough’ to remove it. My symptoms are shoulder, neck and arm pain. Very odd!

[Thecrazypugglelady]

That's not good! My surgeon was a stand in and was on a time limit and as it had already taken much longer than anticipated said I might need to go back just can't afford to keep going in and out of hospital . I thought I could cope with it but its getting worse So frustrating!

So have you got to go to a specialist or anything or have you been left to fight again?