Has anyone got or heard of endo in diaphragm or on lungs?!

[Agilitina]

I'm at the end of my tether. Please help. If you can.

Im still getting the pressure and pain under my right rib during cycle or with vigorous movement. Which travels across under ribs. Its very sore and naggy feeling.

I suggested to my doc could it be endo and she said it only effects pelvic region?!

Im sure this isnt strictly true.

Still having water infection feelings but with no infection. Again usually just before cycle or after sex. I get this pain under ribs sometimes during sex too.

The docs just seem to look at me blank. I'm worried im going to be left with this.

They found mild endo when they did lap in my uterus. But they seem to think thats it. No more. Which i should be happy about. But the problem is still there. Anyone have any suggestions?! Please im desperate x

[Gemmasee]

Hi - I have pelvic pain in my lower back and in my left shoulder blade which is definitely linked. I haven't been diagnosed yet with endo but I think that's what I've got as until this month it was cyclical pain when I was on my 7 day break off my combined pill. This month I've seemed to have it all month. My dr said that inflammation in your pelvic area can cause 'shoulder tip' pain.

[Agilitina in reply to Gemmasee]

I hope they find and treat your problem. Its so frustrating isnt it. I do occassionally get tip of the shoulder on left pain too. Not on every cycle. Also left flank. Thought i had kiney infection few times. These symptoms are crazy. Ive started taking evening primrose to try and settle things down a bit. I hope you get answers soon. Thsnk you for replying to m xxx

[Katie22x]

I've recently been diagnosed with stage 2 Endo, my symptoms actually began with chest pain, pressure feeling in centre of my chest and sharp pains on sides of ribs, more so on my left (made me feel awful) My symptoms progressed, got worse and I began to suffer with severe pelvic pain, so had a lap to diagnose, now doctor believes the chest pain was referred pain. Endo was found on both my ovaries but worse on left side, hence why my chest pain was worse on that side. She doesn't believe I have Endo on my lungs more that nerves were agrovated and displaced the pain. Hope that makes sense. I took amytripyline for a year (before they even considered Endo) but that helped a lot and I would go on it again if I felt I needed to.

[Agilitina in reply to Katie22x]

Thank you Katie. I hope you are starting to feel a bit better now. I am coughing up blood occassionally too which is concerning me. I have been fighting for over a year now with these pains. Ive had to give up my physical job for a sit down job as when i am resting its not so bad. Unless on my cycle. Before that i was dancing 3-4 times a wk. Now i work and go home to bed. Its not much of a life really. But i should be grateful as it could be worse. I hope they will get more educated on this soon. Im not taking pain relief and nothing they perscribed worked for me. Its great something worked for you though xxx

[Katie22x in reply to Agilitina]

Oh bless you, it really is so horrible, I'm currently looking for a less active job as I can't see me being able to continue doing what I do as I also feel better sitting down. Coughing up blood sounds concerning, maybe you could get a second option on it all? I'm still new to it all and learning about specialists, lifestyle and just endometriosis in general. I am planning on trying a diet route in the new year see if that helps, as no pain killers ever seem to work and at times I take so many it's hard to function properly! Amytripyline stops the neve pains which is why I think it helped my chest but I still suffer with it. Feel free to inbox me anytime, some of our symptoms seem similar and just nice to speak to someone who understands! X

[MissyTx]

It could easily be deflected pain from implants pressing on a nerve. I have stage 4 endo and I have pain in the strangest places, under my ribs being one of them x

[Agilitina in reply to MissyTx]

Hmmm its a tricky one. What to do.

[Hidden]

It’s could certainly be endo (because endo can attach to any organ in the body), but statistically it’s unlikely. However, if you are really concerned, keep pressing to get answers. This may mean you’ll have to see other doctors if your current doctor doesn’t take you seriously.

[Maxi72]

My endo effects were extremely rare and therefore I had 15 years of having to deal with it on my own. Knowing what I know now, I would had asked to go on a contraceptive pill to see if the symptoms improved. If they do then the GP cannot argue that it may be endo or at the very least refer you to a Gynae. Not sure if taking a contraceptive pill is appropriate ( or if you’re already on it) but it’s my only idea for getting yourself heard. Good luck!

[Agilitina in reply to Maxi72]

Well done you for dealing with it that long. Ive always suffered with my periods. And i remember days that i could hardly walk and be rolling around in pain. Ive been on the pill in the past. But i was suffering halo migraines and they were concerned in case id stroke so they took me off. Im now scared to go back on. Ive been off pill for 3 years and these symptoms have been building up. I always seem to get sick or ill around my cycle too. With flu like symptoms. Its so exhausting. I tried then coil and it made me worse. Im now waiting for my gynea to speak to urology and come up with ideas. Even she sid she doesnt understand it fully. They really seem cagey about investigating anything other than bowel pelvic region.

How are you now?

[Mel80]

Yes you can get on diaphragm and in the lung. There is a thoracic endo group on Facebook with many women diagnosed in these areas. Unfortunately Drs are way behind in this. You'll find loads of info on there. X

[Agilitina in reply to Mel80]

Thank you so much Mel. Ive been coughing up blood sometimes with phlegm for about a year now. And sometimes comes up after im sick as i feel sick too with food. More around cycle.

How do they diagnose this?!

They seem afraid to go there.

[Amarjit84]

It's definitely possible, I had lumps growing in my abdominal wall, which turned out to be endometriosis. One time, before I had been diagnosed, when I was in so much pain that I ended up in A&E. The doctor there told me he'd just diagnosed someone recently who had endometriosis in the lung.

[Agilitina in reply to Amarjit84]

Thank you so much for replying amarjit.

How did they diagnose you?

The docs seem cagey and tell me its rare or not possible. But im hearing it is. Are they just scared to approach it?! I just need to know. Its so unnerving.

How do you feel now?xxx

[Amarjit84 in reply to Agilitina]

I had to really push them to do anything about it, you know your own body better than anyone else. If something doesn't feel right, keep pushing for them to carry out investigations. That's what I had to do.

I still have the same on going pain, waiting for some more surgery. I can feel more lumps growing in my abdominal wall, think they will be taken out during my next surgery.

Stand your ground! Endometriosis needs to be taken more seriously.