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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]

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  • kelsey1989
    kelsey1989

    Posted

    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.
  • rhonda13
    rhonda13

    Posted

    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!
    • Lanilove
      Lanilove rhonda13

      Posted

      I'm going to research them now. Thanks for the info! God Bless!
  • crapribs
    crapribs Guest

    Posted

    How dd you fnd this out what were your symptoms please .
  • lisa86217
    lisa86217 Guest

    Posted

    Hello my name is Lisa, Im 32 years old and I just had surgery a week ago for  Pneumothorax,My right lung kept collapsing, the symptoms were shortness of breathe, pain while laying down and shoulder pain. My Thoracic Surgeon stated there was a bleb, which is a cyst like bubble on top of my lung and would leak the air out of my lung. They weren't sure what was the cause because I dont smoke, and there were no severe injuries to the chest, so they guessed it could be my cycle.. The first visit to the ER, I stayed for three days,  they put the chest tube in drained all the fluid that way my lung could expand , everything seemed to be fine, this was in March. The symptoms came back, went to my surgeons office took an xray and was rushed to the hospital, after the surgery he stated that he saw and scraped off the Endometriosis off my lung, I was so devastated.. I would have never known this if my lung did not collapse and it explain why my cramps were severe as if i was having constractions about to give birth, cramping between periods, trying and never getting pregnant and pain during sex most of the time.  I scheduled an appointment to see a specialist for this disease to see what my options are and i may know why this happened, as a teenager i took the depo shot once, after that thats when my cramps became severe, so Im hoping i can get rid of this Endometriosis.
    • Lwinford4390
      Lwinford4390 lisa86217

      Posted

      Okay where to start... I am a 21 year old female who sufferers from reoccurring Pneumothoraxes. This all started when I was around 15-16 years old. According to the Drs I have always fit the "pneumothorax type", considering that I am 5'10 and 113 lbs. When I first starting having pneumothoraxs I didn't know what was happening, all I knew is that I had this awful pain and pressure in and around my left shoulder. The pain would shoot up my neck and I would feel this bubbling/popping sensation. I was a hard headed teen and I ignored my symptoms and would just manage until it healed itself. When I first had them I would have the pneumos maybe once a year... maybe twice and then they went away for a while. This continued until July of 2016, when I turned 20 years old. It had been a while sense I had experienced any symptoms so when it happened again it caught me off guard. By this point I just wanted answers so I went to the ER. Since I had "reoccurring spontaneous pneumothorax", the Dr. scheduled surgery the next day, to perform a VATS "video assisted" surgery. After surgery I was left with 2 drain tubes and was told that it would take maybe a few days for my leak to seal. I was in the hospital for a week before my "air leak" sealed. When I was sent back home I didn't feel right... I would lean back and could feel air bubbles and a leaking sensation. It took me almost 3 weeks to fully heal.... When my leak finally did seal I felt amazing.

      About 2 months later the dreaded bubbling and pressure started again. I felt awful and so discouraged thinking I had surgery for nothing; I still kind of feel that way. Ever since this episode of my lung leaking again I haven't felt the same. I constantly battle my lung leaks and pressure. It almost seems like it's a pattern. I went back to the ER and they confirmed that I had another small pneumo and referred me to a specialist. The specialist didn't really tell me much, and what he did tell me I have heard before. The specialist then proceeded to tell me that it could take time and to just live my life. It's hard to just live my life... I can't sleep on my back with the fear of feeling that awful popping sensation. I can't run or exercise because of the fear of my lung reopening or another bleb popping. I honestly just want answers but at this point it seems impossible.

      --Also I would like to throw in this post that today I currently have this strange fullness feeling under the bottom of my left rib cage. To stick my finger and push is awkward feeling and painful...

      --Every time before my pneumos I have this burning sensation right around where they cut the top part of my lung off and adhered it to my chest wall... (this has only happened since surgery not before.)

      It feels like a part of my lung is being cut with a knife. Very sharp/burning feeling.

      -- The dr. that performed my lung surgery told me that my surgery had a 98% success rate so when I returned with another pneumo after surgery he was shocked and at loss for words. He considered catamenial pneumothorax... and the proceeded to send me to the specialist who immediately threw that idea in the trash and didn't even look into it for me.

  • krista42440
    krista42440 Guest

    Posted

    I have had 15+ pneumothorax on the right side.  I had a mechanical pleurodesis July 2014.  It failed and I have recurrent pneumothoraxes.  I am 46 years old with 2 children (thru IVF).  I have been on the pill nonstop for 9 years and it's not helping.  I am doing lots of research to find out if this is a catamenial pneumothorax.  I also have pain in my diaphragm.  Again, doing my own research.  I'm hoping to do a laparoscopy with my pleurodesis and putting mesh over the diaphragm.  After surgery I want to do Lupron for 3 months.  I can't imagine what it will feel like to breath "normal."  For anyone that has to have a pleurodesis, it's really not that bad.  I had surgery on a Tuesday.  By Wed evening I was only taking ibuprofen.  I was out of my bed all day Thursday and sitting in a chair.  I left on Friday.  I was at a soccer tournament on Saturday.  Good luck
    • ksav
      ksav krista42440

      Posted

      Hi Krista, can you tell me how you're doing now?  Trying to decide whether to have the VATs pleurodesis -- many say it didn;t work.

      You want to -- or did -- another pleudodesis?  2?

      Thanks

      Kim

  • carolyn22517
    carolyn22517 Guest

    Posted

    Hi Ladies, 

    I have been dealing with Thoracic Endometriosis syndrome sice I was 17. I am now 33. The first episode I had, I was misdiagnosed with a pulmonary embolism. I was put on blood thinners. The pain that took me to the ER in the first place kept on reoccuring every month and I would go back to the ER only to be told that there was nothing wrong with me as nothing was showing on the scans anymore. This continued until I became pregnant at 23. Pain continued after I gave birth, and then when I gave birth to another child two years later. Finally at age 26 with the help of a good dcotor we figured out that it was pulmonary endometriosis. We didnt do a biopsy to confirm. Have any of you had a biopsy? So i went on a continual cycle of birth control pills, which worked for me for the past 8 years. I didnt have a period and no lung pain. This week it happened all over again. Luckily at the ER I was able to tell them that I have pulmonary endometriosis, so they did a cat scan right away and found four pieces in my right lung, one of them 10cm long. The problem is now that the BCP isnt working for me anymore, they want to put me on Lupron. I really dont want to go on it as I have done some reading on the side effects and honestly would rather just have the lung surgery to have it taken out. The doctors dont want to do the surgery except for one at Stanford, but I have to have it approved through my insurance which may be hard. My question for you all is, what are the pros and cons of Lupron and of the lung surgery? I am trying to gather as much info as I can so I can present it to the doctor and they'll help me to get the surgery approved. Please help me if you can! It's so nice to see other women out there with the same condition, sometimes it seems a very lonely thing!

    • krista42440
      krista42440 carolyn22517

      Posted

      I'm having pleurodesis surgery next week. The OB/GYN is going first to do laparoscopy and them a pleurodesis. I plan on going on Lupron right after. I could do a full hysterectomy (take out Ovaries). But I don't want to try and heal from both at the same time. I took Lupron years ago (IVF) and didn't have any problems. In looking forward to the surgery. I've had the surgery last year and it was pretty easy. I'll let you know about the Lupron. Good luck
    • Sharlynn
      Sharlynn carolyn22517

      Posted

      Hi Carolyn.

      I'm sorry to hear you've been suffering with this issue - there is hope!

      In Jan of this year I was hospitalized with an over 50% right lung collapse.    Like many others ladies on this forum I was initially told it was a Spontaneous Pneumothorax caused by a bleb(s) bursting.  I had just turned 49 and had been suffering from extremely heavy periods for many years due to fibroids. After a very frightening and painful two weeks in hospital with a chest tube inserted, my lung failed to reinflate.  I was transferred to another hospital where they specialized in thoracic surgery and underwent a right video assisted thoracoscopic surgery (VATS) - Bullectomy &  Pleurectomy.  I was released a few days later and at my two week check-up  in mid Feb my lung had partially recollapsed again so I had to be re-admitted for yet another painful chest-tube insertion.

      A bit of background:  Prior to this I was quite active and fit (cycling, running, hiking, etc.).  Also, for a year or so before my lung collapse diagnosis, I had noticed that I had times of extreme fatigue and would from time to time get pain in my upper back/shoulder on my right side accompanied by a "popping" sound under my right breast when laying on my back in bed reading before bed. It was loud enough that my husband could hear it!  I also experienced a bit of shortness of breath only when I would get up to go to the bathroom at night along with a "sloshing" sensation when bending to get items out of the bathroom cabinet. I would also sometimes have a feeling of heaviness on my chest, almost like there was a brick sitting on my chest.  These symptoms would last for a few days and then disappear for a few weeks or months then re-appear.  At the time I chalked it up to sitting too long at the computer or doing too much at the gym or at home.  A lesson never to ignore your symptoms as this was my lung collapsing!

      In March my lung collapsed again!  My surgeon was baffled as the Pleurectomy had failed to prevent this.  This is when she mentioned the possibility that my collapses could be related to my period and asked if I had noticed that the symptoms coincided with my periods. I of course had no idea as I had not been tracking this.  Anyway long story short, I had another surgery (right VATS pleurodisis and Pleurectomy) in March, my lung partially collapsed again in May requiring another chest tube and then again in Jun (slight collapse which resolved on its own).  I was able to do some tracking of theses collapses and sure enough they were happening just a few days before my periods started!  I was referred to a gynocologist who put me on a monthly shot of Lupron Depot.  This stopped the collapses.  Like many I was scared to go on this drug as I had read so many horror stories. After discussing with my lung specialist, gyno, naturopath and family doc I came to the realization that this was the best option. The risk of (possible) side effects beat having the pain of my lung collapsing monthly, hospitalization, chest tubes and more surgery!  I did experience annoying hot flashes, a bit of insomnia and and restless legs however it was nothing compared to the pain I experienced from the chest tubes, surgery etc.  I am off the Lupron now and had a total hysterectomy on Sept. 21st, including the removal of both ovaries, from which I'm still recovering but doing well.  I had done a fair amount of research on Catamenial Pneumothorax prior to deciding on a total hysterectomy.  The specialists and my doc did not know much about it.  From all the literature I read, this seemed to be the most successful option  in stopping these collapses.  Although there seemed to be a correlation between endometriosis on the lung/diaphragm and Catamenial Pneumothorax, that was not my case.  Biopsies from both my lung surgery and my most recent hysterectomy showed no endometriosis.  I can only surmise that multiple fibroids and one very large fibroid could have caused this issue in my case.

      The great news is I have been collapse free since going on the Lupron at the end of June and also my hysterectomy.  I still have soreness/feeling of heaviness under my right breast/rib area as a result of the numerous surgeries and chest tubes however I expect this will take time to subside.

      Dont give up hope!  I know it is a tough and very frightening experience but there is light at the end of the tunnel.  I encourage you and others going through this to read information and research as well as to Google a video from an episode by the Drs. titled "What is Catamenial Pneumothorax? Period Causes Lung Collapse".  In addition, there are many other research papers on this condition.  I put all of this info together in a package, including a spreadsheet showing the correlation between the onset of my symptoms, period and lung collapses and took it to all the docs/specialists who were treating me for this issue. They were impressed and grateful for this info.  This helped with my diagnosis and subsequent treatment.  I am so thankful I came across this info and hope it will help you also.

      Stay strong! I wish you all the best on your journey to wellness.

      Hugs,

      Sharon (British Coulumbia, Canada)

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    • luluwho
      luluwho carolyn22517

      Posted

      that sound just like me but i dont have any kids how are you doing now
  • pamela11872
    pamela11872 Guest

    Posted

    Wow I am shocked to see so many women with what is believed to be or is found to be lung endo. I was diagnosed with stage iv endo, which had already spread to the intestine by 17, at 28 into my right lung. The tricky thing is that lung endo is Extremely hard to diagnosis, unless you catch it at the right time before or close to cycle. I had a partial collapse twice, then it finally showed its ugly head on images! What type of symptoms do you have? My worse being that it has began to cut my air off during cycle or ovulation, that bought me a quick ticket to Atlanta Ga.

    As there is only 2 surgeons actively operating on this, LSU Medical Center in my home state gave me the option of Ken Sinirvo, or Polo Alto Ca. Sinirvo is crazy booked, but does take you if you are presenting with Lung Endo, he does a case review and if rare enough he will take you. My operation is Sept 9. He is a knowledgeable, kind, very educated man that is compassionate, whole office is. Google them, Center for Endometriosis in Atlanta Ga.

    I've almost died twice from my endo now, due to bowel leaking, and been through 15 operations, I wish I'd known of him years ago.

    Good luck to all

    Georgette

  • pamela11872
    pamela11872 Guest

    Posted

    I was diagnosed, clincally, two years ago with Endo in my right lung. It took a few months before it finally showed its ugly head. I was accepted by the Center for Endometriosis in Atlanta Ga for lung surgery, been on the waiting list for 3 months. I actually go in 9 days for my lung surgery. To my knowledge there was only 2 doctors actively treating TES, I live in Louisiana, so I went with Dr. Ken Sinirvo.
    • carolyn22517
      carolyn22517 pamela11872

      Posted

      Hi Pamela,

      I just had my surgery last Wednesday. They found it in my diaphragm also. There was too much of it in my right lung for them to take it out, as I would have lost too much lung capacity, so they took everything off my diagram and we are just hoping that will fix the pain. If not I will have to have a hysterectomy. I wish you all the very best for your surgery! I'm not going to lie, it has been a painful, slow recovery and I hope it is less so for you!!

    • pamela11872
      pamela11872 carolyn22517

      Posted

      Hey there!

      I have to admit I am beginning to get quite worried! They are bringing in 2 additional surgeons in addition to Dr. Sinirvo, one for intestine one for lung. Who was your lung one? Did you like him? I'm skeptical on the other 2 because we've never meet, but I LOVED sinirvo! I hope you heal up quickly. How long where u in the hospital? They are expecting 7-10 days with mine..

    • carolyn22517
      carolyn22517 pamela11872

      Posted

      Hi Pamela,

      I had a few extra surgeons at mine also, I'm not quite sure why but I figured maybe just in case they were needed. I have kaiser insurance so I had to use a kaiser doctor. His name is Jeffery Velotta and thus far I am very happy with him and the job that he did. I was in the hospital for 3 days. I am starting to feel a lot better this week. The pain is definitely subsiding. I actually tried going to work yesterday but it was too much for me so I'm going to hold off until next week and see how it goes.

      Click here to view image

    • pamela11872
      pamela11872 carolyn22517

      Posted

      My surgery is on the 10th. So getting very close! I think the expected stay is because they ordered an intestinal resection too, along with the lung, 3 hernias and my tubes are also blocked. I am worried more so because they have possible complete hysterectomy, which I do not want! Girl I'm basically an endometriosis mess inside apparently! I know I'm hoping for a faster recovery they just told me that it's possible 24 hrs in icu, which is scary.

      It's nice to talk with others that have went and recovering well. It's costing a fortune though, mostly because my deductible for surgery is 3500. Did yall have anyone stay in the room with you? We are hoping for a comfortable couch for hubby lol

    • carolyn22517
      carolyn22517 pamela11872

      Posted

      Hi Pamela,

      I hope all went well with your surgery. Let us know how you are doing!

    • pamela11872
      pamela11872 carolyn22517

      Posted

      Sorry it's taken so long to reply, my surgery ended up taken a bad turn, ending up almost dying in my local hospital trauma center. I knew it was bad when I seen my husband wipe tears from his face and by the rushing of the staff. Jay came in and said, it's going to be okay, but it's time to fight because you are being sent to ICU. They wouldn't let him stay but for a moment, because it wasn't visiting hours. It was bad. The operated on lung had collapsed, fighting hospital grade pneumonia, and was septic. I spent 3 weeks hospitalized.

      As far as my surgery, it was 7 hours most of the hours of work being done by Sinervo. Even with my complications, I thank God I found him. His parts of the surgery I am recovering from amazingly. I have fought pain from endo for years, it is now gone. Now the chest and lung portion, that's a different thing. Due to the complications, I am only allowed to be out of the bed a couple hours a day, and that's about all I can handle. The pain is horrible, now mine ended up being removal of 3 on the right lung. One being so bad they ended up having to remove part of the top lung. Please ladies have a plan for pain management before going in, talk to Dr sinervo before hand. You will need it. Or we'll I feel as if I handle pain pretty well, but not this one. I think it is really because of all the complications added on though. In addition the body is trying to heal from a large midline incision due to them removingredients a 12 cm hernia.

      I will update once I get farther out.

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