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

Hello there , 

5 days ago ....I had Total hysterectomy where I had endometriosis on my uterus behind it and stuck to  my sigmoid colon. On my bladder as well. A lot on my left hand side and where they were surprised to find was under my rib cage , I was also shocked! What could have happened if I handnt insisted in having the operation???? 

Now i only have a follow up appointment with my doctor in about 3 weeks time , but I am really anxious to hear what he has to say about what they found. 

Thank you ! 

I also have been diagnosed with Endometriosis in the lung after a laparoscopy. It was diagnosed in my second surgery in 2008. The surgeons diagnosed endometriosis in one lung, diaphragm, liver, intestines, ovaries, fallopian tubes and adenomyosis. Besides the reproductive system pain, I have chest pain and rib cage pain. I'm preparing for my fourth surgery with  GYNOnco Surgeons since I have distorted anatomy due to the severe adhesion disease or frozen pelvis caused by the endometriosis. Lupron, Zoladex and Femara didn't work, but caused me very bad side effects. I developed osteospenia and muscle pains in 2011 and haven't resolved. I'm 38 years old.

I also have hormonal lung collapses. My first collapse was right lung and got a chest tube and was out of hospital in 24 hours. Chest tube is scary while it is being out in and and is extremely painful while it is in your chest. It drains the trapped air in your cavity a your lung can expand.

About 5 weeks later my lung collapsed again. I got another chest tube and requested surgery as I was told surgery would stop the collapses. I did not ask enough questions because that surgery was incredibly painful and left me with a heavy feeling in my right lung and took a long time to recover from. It was a mechanical pluerodesis.

Every month since then I had chest tightness and just a general weird feeling in my back behind my lungs when I ovulated a right before my period. A few days after my period the sensation would disappear.

About 10 months after the surgery, I was working out and felt a weird sensation. Next mooning I woke up with a lung collapse. I got a needle aspiration which was a breeze compared to chest tubes, as the collapse was small. I was offered Lupron but refused.

About six weeks later I got another collapse. I got a chest tube and was pushed to have another surgery. I refused since it was so painful and obviously failed.

About five days later when I was ovulating I got another collapse! Another chest tube. This time even though my lung always reexpands right away they left it in for five days. It was extremely painful and weeks later my insides feel scratched up still and quite uncomfortable. I got the 3-month Lupron injection and aygestin add-back pills because I was desperate. I got headaches for two days and hate taking them but felt I had no choice. It takes a while to kick in though.

It's been three weeks with no collapse but I am being extremely careful to not lift anything or do anything that can stress my weakened right lung.

Today it feels like there is fluid and pressure in my lung. I just started seeing a holistic doctor and changing my diet in order to rebalance myself. I already eat fairly healthy but obviously we can all do better, so it is very frustrating. Since western medicine does not know how to fix anything but the symptoms, I needed to find a better solution. Wish me luck! And I understand how frustrating and painful and awful this is for you all. It is not a sustainable lifestyle to have lung collapses all the time!!!

I am in my mid 40's and still have maybe 5-10 years before menopause. I can't wait and I certainly hope menopause makes this all go away!

Hi I'm 25 and was with endometriosis stage 4 last August through surgery. When they went in they found my pelvic region covered. My bowels had been infiltrated as well. When I woke up I was told two things. "You are the worst case I have ever seen and you need to get pregant right away." Pregnancy, a hysterectomy, and lupron is not a cure. And sadly we are still being told this. This was the begining of my journey.

While all my health issues make sense now I have a long way to go. When I was younger they thought I had ulcers due to the rib pain and blood in my stool. But now I know the real cause. I have helped a lot of my pelvic issues with the endo diet. But the pain in my upper back, right shoulder, right side of my chest, beneath my sternum, and both sides of my ribs is becoming relentless. I only learned a few weeks ago I have all the symptoms for endo in my thoracic region and god knows where ever else.

I am hoping by next year I can travel to the CEC (Center of Endometriosis Care) in Atlanta GA. Dr. Sinervo has helped many women with extensive disease through excision surgery. And if not him than Dr. Mosbrock in Tacoma WA who is also qualified to work on extensive cases. I have learned so much from the Nancy's Nook Endometriosis discussion and education on facebook. It has made me a well educated patient I really recommend joinging my fellow endo sisters.

I was diagnosed with endometriosis in the lung over 12 months ago but recently when the pain starts I have been having like a bubbling oise on the right side of my ribs. I have tried getting referred to the gynaecologist however my doctor won't as my pain is controllable with me being on the pill!? Does anyone have the bubbling noise and is it normal?

Hi everyone. Wow, I’m surprised to see how many women are having a similar experience to my own.  I was diagnosed over 3 ½ years ago with pleural endometriosis. I was initially misdiagnosed with a blood clot in my right lung and placed on blood thinners for 6 months. After 6 months, still having issues, a chest x-ray showed fluid around my lung.  3 liters of a bloody fluid was drained. I then opted to have VATS surgery to remove the rest of the fluid and also have a biopsy. The biopsy showed the endometriosis.  I was advised to get on Lupron but after doing research on the medication I refused. I went on the endodiet for 5 months and although I felt great, my lung continued to fill up. I decided to try the Lupron for 9 months. It really didn’t help. It lessened my cramps and gave hot flashes. I had a hard time finding doctors that were familiar with my condition, I live in NYC.  I finally found a thorasic surgeon that would help. We went thru another VATS and many drains. We finally opted to do a pluerodesis with wire mesh. It was brutal, 2 weeks in the hospital and a lot of pain.  During the surgery, the surgeon noticed something in my abdomen.  Turned out to be an 11 cm mass.  After the pluerodesis the fluid could no longer get in my lung so it backed up into my abdomen.  After long consideration, I opted to have a full hysterectomy at 42 years old. That was one year ago. I was doing great until a month ago. I started to get the fluid symptons again. Boy, I have no uterus or ovaries, where is this coming from smh. They are thinking there may be some pockets of endo still floating around. I just had a x-ray and catscan, looks like the fluid is back but a small amount in abdomen.  I decided today to go back on the endo diet. We’ll see what happens.  

Hello, 

I have been experiencing EXACTLY the same symptoms as you.  Please let me know what the next steps you took.  This has been the worst year of my life living with this and doctors not helping.  

Thank you so much!

Jacqueline

 I am not a professional

I have studied essential oils for over 30 years I am just now needing them I do not know if the essential oils will work or not I am to use the oils for 8 weeks for endometriosis you can find your own oils I use Cleary sage: lavender :frankincense : geranium: tea tree : coconut oils: arnica :  : on my stomache wrists my ankles: & acupressure points where the endometriosis is located: 1 drop each essential oil  on each finger under my tongue : I use napkin to release sour oil taste into :  I got at he