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Post by fishguru on Nov 25, 2011 15:48:47 GMT -5
Aloha all! I have not been on here in a while. Been dealing with my endo and trying to live my life, but something happening this past week that brought my endo to light again. I had a spontaneous pneumothorax (aka collapsed lung) this past Sunday and ended up in the hospital for 3 days with a chest tube. I do NOT fit the usual profile for this (no family history of lung issues, I'm only 43, I don't smoke, I'm not a young man with Marfan Syndrome-type attributes, etc). When speaking with the surgeon, she asked me all those questions and then asked "have you been diagnosed with endometriosis?". Yes, I was!!! Last year December when I had a tubal ligation! The surgeon said that whenever a woman without any of the above issues has a spontaneous pneumothorax, more often than not, she has endometriosis. Whether she knows it or not. Unfortunately, unless my lung keeps collapsing, we won't know if this is true in my case. If my lung chronically collapses, they will surgically affix my lung to the chest wall. At that time, they will see if the endo is up there. In my reading about endo, I never saw anything about spontaneous pneumothorax possible being connected to endo. Or if I did, I never paid attention to it. I just thought that I would share this new info with all of you as all the other doctors/nurses I've spoken to since this happened did not know there might be a correlation. Oh boy.... another thing to worry about with this endo crap! So, if you ever get a sharp pain in your chest that goes into your back and you have a hard time breathing.... go to the doctor or ER and demand a chest x-ray. Explain that you have endo and that you might have a collapsed lung. They'll give you a funny look, but who cares. Happy Holidays everyone!!
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Post by JC on Nov 25, 2011 17:22:43 GMT -5
OH WOW that is scary!!!! I'm so glad you are OK though!!
I have heard of endometriosis causing a spontaneous pneumothorax. If endo is on/in the lung or the plural sac around the lung, when you have your cycle, the tissue can get inflamed and cause your lung to collapse. It's extremely rare. When this happened, did it happen around your period or when you're ovulating? We might have a thread on it already but I don't remember. I'll have to search for it.
I'm just glad to hear you're OK! Thank you for sharing the info too. If this does happen again, try to take note at what point in your cycle you are at. That might give you the hidden clue if it's endo or not.
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Post by Karen on Nov 25, 2011 20:01:53 GMT -5
Yeah, I've heard mention of it somewhere. One member's sister has endo on her lungs and I believe is on femara to treat it?
Sounds scary!! I hope you're doing ok now??
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Post by fishguru on Nov 25, 2011 20:51:52 GMT -5
Ok... here's my timeline...
Sunday afternoon - Chest and back pain. Breathing ok. Think I just pulled a muscle in my back.
Monday morning - No back pain. Chest pain increased. Now having hard time breathing.
Monday afternoon - Go to doctor, end up at hospital.
Tuesday morning - *Period starts*
Interesting, huh??? What was I doing when I felt the chest/back pain?? Vacuuming before a dinner party at my house.
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Post by fishguru on Nov 25, 2011 20:56:20 GMT -5
And yes, I'm ok now. I had the chest tube removed on Thanksgiving morning. Quite thankful I could take a real shower! I think I'll email my Gyno this weekend and let her know what happened. I sure hope this doesn't turn out to be a *monthly thing*!! If either of you find anything on the connection of endo and spontaneous pneumo., pls let me know. And yes.... having my period while in the hospital being stuck connected to a suction pump machine was NOTTTTT fun at all. I begged them to disconnect me from the pump so I could go to the toilet. I was NOT going to use a bedpan at that point! They would only give me my 800 mg of ibuprofen every 6 hours (I usually have to take it every 4 hours). At 4 hours, I started to have horrible cramps, nausea, feeling woozy, etc. I had to request a heating pad. They brought me this HUGE, water filled pad with a circulating pump-thingy!!! It worked, but I missed my trusty little heating pad at home.
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Post by JC on Nov 25, 2011 20:56:21 GMT -5
Oh wow. Could be!!
I'm glad you are OK!
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Post by chasinghope on Nov 25, 2011 21:36:01 GMT -5
Wow! Sorry to hear you went thru this. I am new here and just posted about Thoracic endo, looking for insight as I am 6 weeks post op from Abd endo, have been having Lt chest/rib pain. I'm not sure there are may docs that are well experienced with it Good luck to you!
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Post by fishguru on Nov 25, 2011 22:48:54 GMT -5
chasinghope - Welcome! I'm going to go and check out your Thoracic endo posting.
You know, I never had any previous chest symptoms. This was just soooo weird. I'm going to be doing a lot of researh on this now!
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Post by semicolon on Nov 25, 2011 22:57:51 GMT -5
Hey fishguru & chasinghope, I had endo removed from my diaphragm in September, so I'm happy to share my experience (it is pretty damn rare)! After I got diagnosed with endo after my colon resection in February of this year, I started noticing I was having right sided shoulder pain that would start on the heavy days of my period, then would worsen into a right "stitch" near my rib. It would be worse when I took a deep breath. After my period was over it would pass for the most part, except for some twinges here and there. My colon surgeon was the first to mention thoracic endo, my ovarian surgeon swore I had gallstones (duh, argh!) which is why I found an endo specialist. It was like clockwork with my cycle, impossible to overlook the connection. I had about four spots of endo on my diaphragm, some hiding behind my liver; since they were removed I have had two cycles without that pain (so far, so good!).
Needless to say, I was freaked out about having lung collapses so I have done a fair amount of research. Endo on the diaphragm effects the phrenetic nerve, which is felt in the shoulder (like the post-surgery gas pains). Pneumothorax related to endo does not necessarily mean you have it in your lung; you could but it often that it is in the pleural space or on the diaphragm and has caused damage and air is let through, causing air in the pleural space and causing the collapse. If it is actually in your lung, you are likely to cough up blood or show fluid inside your lungs (yuck!).
Long post short, track your symptoms carefully but definitely see an endo specialist before having a thoracic surgeon decide what is best- you may or may not need a pleurodesis (adhering your lung to the wall so it can't collapse)! It is very, very rare- my endo specialist does pretty much all endo for 20+ years and had only seen a half a dozen or so with it in the diaphragm or lung. But it was outpatient day surgery- amazing! Sorry to write so much- but it was so hard to find someone who had gone through this too so I like to share!
fishguru- was it right or left? Catamenial pneumothorax is almost always right, but can be left. chasininghope- are your symptoms cyclical?
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Post by semicolon on Nov 25, 2011 23:01:47 GMT -5
And I meant to say, hope you salvaged some Thanksgiving! What an ordeal, bet you were glad to get that tube outta there!
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Post by JC on Nov 26, 2011 8:41:24 GMT -5
What I'm curious about is what kind of doctor should treat endo in other places like the chest? I don't think and OBgyn should be poking around the lungs but does a cardiothoracic surgeon do it? Do they work together?
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Post by semicolon on Nov 26, 2011 9:51:57 GMT -5
Right, I made it sound like ob-gyn's are surgery superheros! I didn't mean to do that For my diaphragm, I had an endo specialist and a general surgeon who does a lot in that area (such as hiatal hernias), they have done this together in the past. I think for endo in the pleural space or lung you would want a thoracic surgeon and an endo doc, but that is hard combo to come by. During my diagnostics, I had a conversation with a cardiothoracic surgeon (friend of a friend who is the chair of his department), who had seen and handful of pneumothorax related to endo. His approach was a pleurodesis, but with no mention of trying to remove the endo or looking for abnormalities in the diaphragm. This bothered me because the research says most women with collapses have holes in or endo on the diaphragm, so it would seem you have to repair that as well (or perhaps you could repair the diaphragm it that was the real problem, since a pleurodesis is a pretty major procedure). Like I said, I was pretty freaked out so I did A LOT of research and it is very hard to find someone who deals with this more than once every five years. There is a thoracic surgeon in Atlanta who lists thoracic endo as a specialty, I assume because he does surgeries in the same hospital as the folks with the CEC (just a deduction, i didn't investigate it more than reading his website). Here are a couple articles for the geeks out there (one on catamenial pneomothorax, one on thoracic endo): ats.ctsnetjournals.org/cgi/content/full/81/2/761www.ncbi.nlm.nih.gov/pmc/articles/PMC1963754/
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Post by JC on Nov 26, 2011 11:56:58 GMT -5
Awesome! Thank you for the information!
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jtean
Full Member
Posts: 119
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Post by jtean on Nov 26, 2011 13:47:12 GMT -5
Oh man. I know someone who also had it in her lung, but she didn't have this happen. She kept coughing up blood during her period, and eventually had a biopsy done, and suprise!! lung endo! She went on lupron to try to help everything, but it did NOTHING for her symptoms, and she now has severe manic depression that she never had before going on the lupron
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Post by chasinghope on Nov 26, 2011 21:24:24 GMT -5
Semicolon- Thanks so much for sharing your story and info. I will check out the links. My pain does not seem to be cyclical so I am not sure what is going on. My most recent surgery was done by Gyn Onc, as I was diagnosed with Gyn cancer 2 yrs ago. The Thoracic surgeon I just saw didn't seem to have much experience in dealing with Thoracic endo, he suggested a steriod injection to help with the pain, not to fond of that idea. So right now I am just trying to be patient
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