lissy Posted April 25, 2011 Report Share Posted April 25, 2011 Well the day after Halloween I have a small pheumothorax (lung collapse) and pleurisy.I started having these pains while breathing Thursday and it went away and came back Saturday severe pain when breathing went to the ER and they did an xray and said I had pleurisy...So I am in so pretty bad pain the interesting thing is I asked the NP that seen me why would I be having these problems happen during my cycle? I mentioned that I read something about endometerosis affecting your lungs & brain in rare circumstances she replied NO I have never heard of that endo only affects your pelvic region. So I was thinking to myself OHHH boy I'm dealing with someone with NO knowledge so I decided to ask " do you know what POTS is or dysautonomia"; she said NO I'll have to look it up.I felt so alone thinking who is really handling my care do I actually have pleurisy or is something else going on I'm still kind of worried I will get in with a specialist soon but this is the reason why I have a phobia about medication I feel in a real emergency with *rare people what chance do we really have. Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted April 25, 2011 Report Share Posted April 25, 2011 That must have been so scary. It's really hard when doctors dont understand what's going on because they have never heard of it. The best thing we can do is to arm ourselves with as much knowledge as possible, and write it down. It is very helpful to have a list with you that includes your medical conditions (and possibly a very brief description of what it is if it's rare), medications you are taking, allergies or adverse drug reactions, and your normal vital signs (I say this because ours are frequently off and they need to know what your normal is to even begin to treat you). I keep mine in my purse so it is always with me. As far as endometriosis goes, I have also read that in rare cases it can travel to your lungs...although I'm not sure if that includes your pleural cavity. When I read it I assumed that it was more pulmonary embolism related, but who is to say for sure! Have you been evaluated for any other autoimmune diseases?Sorry to hear you're having such a rough time Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted April 25, 2011 Report Share Posted April 25, 2011 I am wrong, it can affect the pleura. Here is some information you may find interesting:http://en.wikipedia.org/wiki/Catamenial_pneumothorax Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 25, 2011 Report Share Posted April 25, 2011 Sorry to hear you are having a rough time also. Pleurisy really hurts bad. I hope you are feeling better. I often tell the ER docs to come to this site and read the Web site info pages. I wish I dared to carry my POTS video changes with me so they could watch it They don't seem to understand my doctors notes and we have discussed this at my last visit and he has written a letter to the admin of the hospital on how important my meds and how they are dispensed are. Also, that I do know what I'm talking about when I sick and can't argue with ER docs about my meds as it take too much energy out of me. I hope and pray for a miracle for for each and everyone of us tonight.I hope you all have a good night's sleep. Hydration all day tomorrow and I never know what that may bring along with that. Good night all ~Hugs Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 25, 2011 Report Share Posted April 25, 2011 So sorry, Lissy. I recall that lung collapse/pneumothorax (and perhaps pleurisy) can be linked with a connective tissue disorder, like EDS.. Just a thought.Hugs & Prayers-Julie Quote Link to comment Share on other sites More sharing options...
lissy Posted April 26, 2011 Author Report Share Posted April 26, 2011 Thank you all for replies, its getting alittle better everyday. I haven't been eating good for a few weeks and its making me weaker along with this pain! I got to get a grip real quick...I guess once in awhile we had to have out of the ordinary medical problems to make our POTS seem not as bad:)Lissy Quote Link to comment Share on other sites More sharing options...
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