1. Community
  2. Women's health
  3. Endometriosis

I have been diagnoised with Endometriosis in the lung. ...

Posted , 45 users are following.

Guest
Guest

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

84 Replies

Prev Next
  • carina26
    carina26

    Posted

    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

  • veronica2
    veronica2

    Posted

    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.
  • rhonda13
    rhonda13

    Posted

    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?
  • lian1104
    lian1104

    Posted

    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
  • rhonda13
    rhonda13

    Posted

    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.
  • lian1104
    lian1104

    Posted

    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 :-)
  • jennifer78121
    jennifer78121

    Posted

    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.

    • Lanilove
      Lanilove jennifer78121

      Posted

      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. 
    • symone63213
      symone63213 jennifer78121

      Posted

      Hi I just wanted to know how you are coping with this.. I have recently been diagnosed with endometriosis of the lung and your symptoms are actually what helped me get a diagnosis because I have exactly the same bubbling in my chest followed by the coughing if blood and the immense pain. I told my doctor about your case and was sent to a specialist who is currently running tests on me mainly bronchoscopy to find where the blood is coming from.

      Please let me know how you have got on.x

  • kelli19810
    kelli19810

    Posted

    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!!
    • kelsey85
      kelsey85 kelli19810

      Posted

      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
      Kesha78 kelli19810

      Posted

      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
      Sharlynn Kesha78

      Posted

      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
      luluwho Kesha78

      Posted

      Wowww thanks for sharing,, did you have any other symptoms I have not had chest tube yet but I feel like it’s going to get there before anyone believe me,, I also have  experience bloating  in my stomach that I look 3 -4 months  pregnant 
    • Kesha78
      Kesha78 luluwho

      Posted

      Hello,  other symptoms to know your lung has collapsed is your right shoulder blade in your back will hurt like it has a catch in it. You will feel like you are very out of breath doing the smallest things. If you do ever need chest tubes the small ones hurt the worst coming out due to they just snatch them out, no numbing of any kind. The last one they took out of me got stuck on my ribs so he had to snatch harder, I thought I was going to jump off the table. Since this post I made I have had another major surgery, they did a mechanical procedure to rough up chest wall so hopefully the lung will stick from the scarring. So in all my lung has collapsed 4 times this year and I have had 7 chest tubes. After this surgery I had two chest tubes the size of your middle finger coming out of my right lung. It hurt to even take breath. My surgery was September 13th and now a month and half later I still can’t be up all day doing normal things cause that surgery takes a lot out of you. I am a person that goes to the gym 4-5 times a week but that hasn’t happened since early February this year cause of all my problems. I so hope you don’t have to go through this cause this has taken a toll on my mind and my body. I am a strong person so I just keep going as anyone should, plus I have 3 boys that I HAVE to be here for. 
    • jen2223
      jen2223 Kesha78

      Posted

      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
      Kesha78 jen2223

      Posted

      I had 2 VATS surgeries 6 months apart. They did not find any endometriosis tissue but still don’t know why my lung collapsed 4 times. The second surgery has seemed to work, before that I had a total of 8 chest tubes. I still have pain from last surgery in September, it hurts to yarn. I hope you get better and I really do mean that. I wouldn’t wish a chest tube removal on anyone. 
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.