I have been diagnoised with Endometriosis in the lung. ...
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I have been diagnoised with Endometriosis in the lung. I was wondering if any one else out their had this condition??? It's such a rare condition doctors dont know what to do...
[i:02b6405ce5]This message was automatically imported from the original Patient Experience[/i:02b6405ce5]
2 likes, 84 replies
carina26
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carina x
veronica2
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rhonda13
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lian1104
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rhonda13
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lian1104
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jennifer78121
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chest tube put in to reinflate the lung and all was better. For about 18 months I was fine. Then the right lung collapsed again. This time they did the thoracocsopy(?) and chest tube to "glue" the lung to the chest wall. A few years later I noticed pain behind my right lung on and off. I didn't really pay attention to the timing of it until 4 years ago or so. The pain starts behind my right lung exactly 3 days before my period starts. The pain lasts several
days then goes away until the next cycle. The pain feels as if there is a giant air bubble trapped in my chest cavity behind the right lung. I am not able to release the pressure, I just have to wait it out.
I have not had any luck getting through to my doctors that this isn't normal.
I have not been diagnosed with endometriosis, but never tester for it either. Fortunately, I have 3 kids.
While I was pregnant or breastfeeding, there is no lung pain at all! There is definitely a connection between menstrual cycle and the lung pain.
I would love to know your thoughts and would appreciate the name of the endometriosis doctor in Atlanta. Thank you kindly.
Lanilove jennifer78121
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symone63213 jennifer78121
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Please let me know how you have got on.x
kelli19810
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kelsey85 kelli19810
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Hi Kelli,
I live in WA state (Seattle area) and have been on a desperate hunt to find doctors who can help me with chest pain which I'm suspicious could be lung endo (I've had two laparoscopies which found endo). I have severe pain every day almost all day (still have pelvic pain as well). Anyway, I've been unsuccessful in finding doctors to help - whether ob gyn/pulmonary, etc. Could you provide me with doctors who have helped you? Any information would be super appreciated. Thank you so much.
-Kelsey
Kesha78 kelli19810
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Hello I am 38 years old and I feel like my world fell apart 6 weeks ago. I went to an urgent care and was told that I had an upper respiratory infection, they didn't think to do an xray when I told them I was having a hard time breathing. I walked around for a week before my primary care Dr did an xray and immediately sent me to the ER. That was the 1St time I heard my lung had collapsed. They immediately put a chest tube in and if you could have heard all the air I coughed up, my lung had completely collapsed. I was in the hospital for 5 days on suction, my lung never completely reinflated but they let me go home. 4 days later my lung started to collapse again, I was put back in hospital to see a specialist. This specialist asked me when my cycle was to come on again, I said in 2 days . That was when I heard that my lung collapse could have something to do with my cycle. He did the surgery where they look inside you with video , they rough up your lung hoping the scare tissue will make your lung stick to the wall again. He said that he didn't see any endo when inside me so he wanted to rule out catamenial . Needless to say my lung still has not inflated completely and now that my lung is acting up again he is now rethinking it dealing with my cycle. I have had 4 separate chest tubes one the size of a middle finger and these things hurt when they are pulled out. I have been in the hospital 3 times in a month because of this , and the way I'm feeling right now I might be admitted again tomorrow. I just want to be fixed and feel whole again. I have 3 kids so I am open to almost again right now. I would not wish this on the devil himself. I don't feel so alone reading all these remarks from all these women. I am not for living off of pain meds so I need them to fix me.
Sharlynn Kesha78
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Hi Kesha,
In 2015 I suffered multiple right sided lung collapses resulting in two lung surgeries and multiple visits to the hospital for chest tubes. It was a very painful and scary year and I completely understand how you are feeling. It was eventually diagnosed as a Catamenial pneumothorax however the surgeons did not know how to treat it as they had never come across it before. I ended up doing a ton of research and found twin sisters in the U.S. who had the same condition and had themselves done research on it as well as a survey. Turns out it's not as rare as the doc's are making it out to be. Many women seem to suffer from it. To make a long story short my gyno put me on a 3-month course of Lupron Depot which stopped the collapses. I then had a total abdominal hysterectomy removing both ovaries. This is also what the twins did. They have been collapse free for over 12 years and I'm happy to report so am I, going on to my second year now with no more crazy symptoms or collapses. The solution is definitely the hysterectomy with removal of both ovaries as it's the hormones that feed the endo. Lupron is dangerous to be on long term from what I have read. I have managed my menopause symptoms naturally with an adrenal and wild yam complex through my naturopath and am slowly getting back to fitness with yoga and Pilates. I go for visceral massages for the scar tissue.
Unfortunately I cannot post a link to these twin ladies' website as this site won't allow it however I'm sure if you google twins plus Catamenial pneumothorax you can find them.
Hope this info can help you and others who are suffering from this very scary and painful condition. There is a light at the end of the tunnel and you can get better. Take care.
sharon
luluwho Kesha78
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Kesha78 luluwho
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jen2223 Kesha78
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Hi Kesha,
I am going through a very similar experience. How did things turn out for you. I spent the last week in the hospital with a chest tube. Finally had a VATS procedure where the laparoscopically tried make my lung stick to the wall. It did't work. I was sent home. My lung is still not fully inflated and original surgeon does not want to touch me now. We have confirmed it is catamenial pneumothorax based on the tissue found on my lung. I will start luton this week. But my biggest concern is my lung and I think I need another surgery.
Kesha78 jen2223
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