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...
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In response to your letter about endometriosis on the lung. Can you please tell me your symtems as i have endeometriosis and always get this severe pain in my back which goes through my rib cage, i can not get rid of this pain with any painkillers and it also coinsides with when my periods should be.
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Hello my name is janeane,35 years old,I have endeometriosis also and have been having the same pain,it goes under my ribcage in my back some times in front,pain radiates and hurts when i breath,happens same time every month right before my period.My doctor said it could not spread up that high and so they checked my gaul bladder was fine.Then ultrasound now they want to do catscan....janeane
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I too was diagnose with endometriosis of the lung about 4 years ago( age 27)I AM NOW 31. far u are the third person I know of that have this rare condition. The other two was a set of twins I met on line when I was first diagnose and was looking for answer. No one sat me down and explain what I have, what to expect or anyting. I had to do the research myslef and that was how I found a specialist. I had pain in my right hand and chest and caugh a lot. for months I would go through this. I did not take much notice untill it happen at a certain time of the month during my period once that was over the pain go away. Then I realize the pain started to stay longer. I could not laugh, or breath deep without being in pain even when I lay down. I called out of work after feeling realy sick and throwing up. That day nomal breathing was difficult. The next morning I went to a walk in medical center instead of making appointment with with my doctor. When I went in after an exam i was sent to do a xray. Then all i know if about 2-3 doctors are asking me questions like did you have an trama like a car accident. I was admitted to the hospital right away. A chest tube was put in my chest. after almost a month with a chest tube I was told I had endomitriosis of the lung. I say so many doctors and interns asking me questions. No one have ever heard of it before. I underwent two surgery where my lung was seal to my chest bone to prevent a nother lung calapse. I also had surgery to remove endometriosis from my uterus. I am still seing a specialist. I was put on the pill at first. when I met my specialist he said because of the lung endometriosis I will have to have another kind of treament. I was put on Lupron depot(harmonal treatment) which make me exprience menopause. after more than a year I was place on depo provero. with that I was having a period and it all start again. I was place back on the lupron. The worst part is I am having all the symtoms of menopause. Each time I am close to another shot I can feel my lung about to hurt. I am unable to see my period because it will start all over again. I am tired of taking meds but I rather that than be in pain. I got married in November06. We are now trying to have a baby. The endomitriosis damage my tubes so we have to do IVF. I may have to go back on the meds after the baby is born.
This is so rare that many doctors are not aware of it. When I talk to people especially women they have never heard of it. Some do not know what endometrosis is. I am living with this four years now. I am not cured. I still feel small amout of pain in my lungs and not sure if that is from the surgery. When I get am pregnant it may help the endometrosis fo the uterus but my lungs will still affect me. Having a period is not a plan for me at this time. To cope with it I pray alot and I do get support from friends and family and now ai have a husdand to help.
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I have had endometriosis of the lung for 7 years I was diagnosed very quickly, within 4 months. I was 24 then, I am now 31, thankfully 11 doctors put their heads together and quickly diagnosed me. However I had to complete a very long stint of isolation in the contagious disease section of the hospital before they released me and realised I wasn't contagious! I suffered stabbing, electrifying chest/lung pain for about 3 years before a visible symptom reared it's ugly head outside piccadilly circus tube station where, horrifically, I experienced a bubbling sensation rise through my left lung which worked it's way up towards my throat, prompting me to need to clear my throat which brought up about 2 cup fulls of bright red bubbly blood... I was horrified. This happened everytime I had a period, about 3 times each cycle, until eventually I was diagnosed with pulmonary endometriosis. My doc gave me the option of 2 treatments, invasive surgery or I could take the contraceptive pill every day without ever taking a break, meaning no periods. My doctor told me that taking the pill every day will eventually make the endometriosis shrink and then eventually disappear. I chose the high oestrogen pill... and it worked. After a bit of breakthrough menstrual bleeding in 2007 and no sign of coughing up blood in 6 years, I decided to have a break from the pill in dec 2007. One year later, December 2008 I went to casualty with acute stabbing pains in my abdomen and severe pain during urination.. even though I gave them my medical history they didn't connect the two and discharged me undiagnosed... since then (in the last 4 weeks) I have been experiencing severe stabbing pains around the middle section of my lung, around my back, on my shoulder and beneath my breast plate...... I went back to the docs today to pick up a repeat prescription of my high oestrogen pill.... It looks like it doesn't go away. I don't have a husband yet, but want babies before I'm 35/6 and this scares me.
Yes, I too have experienced what was diagnosed as \"Pulomonary Endometriosis\" 2 years ago. I've been treated with hormones and have a wonderful team of doctors in Boston, MA. Literally saved my life. I never had pain or other serious symptoms. Only, Persistent coughing, winded easily ( which was odd as I am very athletic), heavy breathing and ongoing menstrual bleeding with horrible cramps. At times felt faint during menstrual cycle. Apparently I was first diagnosed with pneumonia and collapsed lung (pheumothorax) which kept filling up with fluid. Long story short- I was referred to a Pulmonologist who literally had this \"running theory\" that it may be a rear pulmonary disease. Had chest surgery better known as thorocoscopy and have been ok since so far. (Thank God) I would also recommend having a experienced fertility specialist. Mines is great and specializes in endometriosis. From what I understand its possible to still have children but it can be tricky. A good team of doctors is the key. Hormone therapy is not ideal but from what I can see it works.
hi i have endo and have just been told i may have endometrial polyps on my lungs. i suffer every day with all different kinds of symptoms from cramps which leave me unable to move,painful sex,problems going to the loo, pain before while and after i go to loo,feeling sick alot, loss of appetite, headaches,pains in my chest,being ill all the time,having no energy but to name just a few. im hoping someone can help me by telling me more about this endometrial polyps on the lung as i cant find any info on the net and know one seems to have herd of it or what it will/can do to the women that has it. im 27 soon and have been fighting this since i was 17,only found out it was endo when i was 20 and in the last two years everything has got much worse i can no longer work as it has got so bad. please please any info would be much help thanks
carina x
How and where can I get diagnosed. My diaphragm is stuck up into my lungs, my heart is being pulled and putting me in the hospital due to it racing out of control. Doctors won't believe me. "Something" even showed up on the CT scan but doctors won't believe me and its killing me. I need help quick.
Those of you that have been diagnosed with endo. on the lungs please let me know how it turned out and what you did to cure it. I have had endo. since I started my periods. Around 12. They didn't diagnose me with it until I was 23 after I got married. I have had about 4 laporoscopys and tried the pill, but I still have it. I have always had pain on the left side of my chest and hard to breath from that side about two weeks before my period and then after my period it calms down. Some parts of my spine is very tender and the left side of my neck hurts very bad two weeks before my period and then calms down. I have stroke like symptoms when it gets real bad. Sluring of the speech, left eye and face drooping and i have to very little movement on my left side, if any at times. I do feel weeker on my left side even when I am not going through all that. My heart has been checked out when I was in the hospital for about a week, And I have had an MRI and several other scans and nothing shows up. Besides the little spots on the right side of my brain that can be a sign of small strokes. They let me go and said that it was all due to migraines. No doctor will listen to me, but I think that I have endometriosis on my intestines,( I have alot of pain over there and I had a test where the scope is put in to look at your intestines and the doctor said that it showed a turn where a turn was not supose to be and that it could mean that endometriosis is there and pinching it off.) on my spine, neck , lungs and maybe brain. I already had it on my cervics and had my uteris and bladder attached. When the uteris and bladder was attached I was having pain and burning when I went to the bathroom. They didn't believe me when I said that I believed it was endometriosis, but they found out I was right. I don't know how to convince them about these other places. And If I do what can they do anyway that could improve my way of life? I am 35 now and God has miracualously given me 4 kids, but I have also had 5 miscarriages. I just want something done that I can take care of them now and not have to lay down all the time. Any answers?
I have been diagnosed of endometriosis on the lungs and heart what happens next for me??has anyone else had this. Drs dont really know what there doing. I cant deal with the pain much longer. Have been prescribed tramadol. Thank u
There is am endometriosis. Specialist in Atlanta Georgia that I was going to go to but all of a sudden miracle happened and I became expecting. There is also one in New York and California. I wouldn't go to any other dr other than a specialist that cuts all the endometriosis out and doesn't just burn it. Google endo specialist and see if you can find them. I did a lot of research on this and those are the only dr I found. I wish success. If you can't find them just let me know and I will try and look for there info.
That is brilliant news. Congratulations. Im lucky as I have 2 children I was diagnosed after I had mine. Im from the uk so thats a bit far to go lol. Thank u for ur reply means alot :-)
Thank you all for sharing your insight. I really feel that this is what I suffer from too. At age 19 my right lung collapsed. No one could tell me why. The doctors just called it a spontaneous pneumothorax. I had a
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.
My symptoms are/were very similar to yours. In 2005 I had my first pneumothorax. My lung wouldn't reinflate so the thoracic surgeons did a partial pleurodesis on my right lung. I never had symptoms previous to my first collapsed lung. After the procedure, I would have symptoms almost monthly, about two to three days before my period. If I was active and stressed out, then the symptoms would be worse. Nine months after the first surgery, I had another really bad collapsed lung and so the surgeons did a pleurodesis on the rest of my lung. I had initially brought the diagnosis to my doctors but they said it was too rare and I couldn't have that. After the 2nd surgery, they agreed with me because I had documented the symptoms. They could see the correlation of timing and ruled everything else out. I was diagnosed with catemenial pneumothorax. I had a really great OB already and lucked out in the ER with my thoracic surgeons and pulmonary specialist. My pulmonary specialist was great in researching and providing me with information and listening. My OB GYN was very experienced and talented. He actually had a patient years ago with the condition. He put me on Lupron as a treatment after my 2nd surgery. The surgeries keep my lungs from collapsing but it was the Lupron that seemed to shrink the endometrial tissue. After a year off of Lupron, I noticed the symptoms started coming back. So I went back on Lupron for 3 months (one year on the first treatment) and it seemed to help. I am beginning to have mild symptoms again. At least I know what I can do. My symptoms include slight pressure at the bottom of my lung (diaphragm), pain between my shoulder blade and spine, a constant need to clear my throat (not sure why), coughing, feeling tired, and then feeling nauseous after about the third day. I don't even bother going in to the doctor now a days because it isn't that bad. They really can't do anything more anyway. If it gets worse, I will go back in. In summary, what worked for me was my documentation (date and symptoms), x-rays and CAT scans, good doctors (search until you find them), pluerodesis surgeries, and Lupron treatment. After that, my OB GYN also put me on a birth control pill. My pulmonary specialist also had me on dioxicilan (may not be spelled correctly) which is a low dose antibiotic for a long time. We couldn't figure out why, but It seemed like that helped keep the symptoms more mild. My episodes were impossible to ignore but if I hadn't had two major collapsed lung episodes, the doctors may not have been so eager to treat me. Keep at it. I don't have a name for a doctor in Atlanta. I live in WA state. Try your state university, if you haven't done that already. I would first find a pulmonary specialist. An OB GYN would send you to a pulmonary specialist also. They can treat endometriosis but they are not lung specialists. The patient is usually the bridge between the two. Good luck and Prayers!!
Help! Has anyone with stroke like symtoms bern diagnosed eith endo somewhere in spine or head. Im not sure if its possible but the dr says I have migranes but im thinkong spinal endo? Also I have what feels like painful horrible heartburn in my back possibly air trapped in my back or lung endo.
The Dr in Atlanta GA is Dr Ken Sinervo. It is called The Center for Endometriosis Care. Dealing with them by phone and mail they were really nice and helpful. I hope you get your answers and help soon!
I've been suffering for 8 months now with the same symptoms. I had Sugeiry to past my lung to my chest on a April 17th 201. The specialist thinks I have endometriosis but is unsure. How did they detect that you had endometriosis of the lung? Please contact me I would love to understand what's going on from another point of view.
I experienced the same thing. I'm 30 and I have a daughter and I want another child. The Doctors told me that I "may" have endometriosis bug I've never been tested for it. My right lung collapsed and they put a chest tube in and 7 months later it collapsed again. This time they performed thoracocsopy and chest tube to paste my lung to my chest wall. Now I'm approaching my menstural after having the sugery and I don't have any pain now but I have a "bubbly" sensation that makes me cough. I'm not sure what's going on but I need some answers.
I'm going to research them now. Thanks for the info! God Bless!
How dd you fnd this out what were your symptoms please .