Idea Transcript
Bloomin' Uterus
Endometriosis & The Lungs MARCH 25, 2015NOVEMBER 28, 2017 | BLOOMIN' UTERUS
(https://bloominuterus.files.wordpress.com/2015/03/download.jpg) I’ve read bits and pieces here and there that Endometriosis can grow on or inside of your lungs. An EndoSister had posted in one of the many Facebook support groups that I follow that she has Endo on her lungs, which causes her to cough up a lot of blood. Others replied that they have it as well, but it leaves them in the hospital with collapsed lungs every month. Which got my juices flowin’ to find the documented cases of Endometriosis on the lungs, how it was excised (if at all), etc. Here goes! This is NOT meant to scare you. Just educate us all, including myself. Endometriosis is usually found within the pelvic cavity, but has also been known to be found northward and latching onto the liver (https://bloominuterus.com/2015/03/04/endo-liverfunction/)and diaphragm (http://theendotheworld.com/2015/10/14/my-experience-of-living-with-diaphragmatic-endometriosis/). It has also been found on the membranes surrounding the lungs and heart (https://bloominuterus.com/2015/09/16/endometriosis-the-heart/). Even rarer, it has been found on the brain (https://bloominuterus.com/2015/06/03/endometriosis-the-brain/), in the lymph nodes, and on the eyes (https://bloominuterus.com/2015/04/09/endometriosis-the-eyes/). Thoracic or Pulmonary Endometriosis is when Endometriosis implants/adhesions are found in your thoracic region, and can be found on your trachea, bronchi, diaphragm, lungs, or heart. It was first medically documented in 1953. Today, we focus on the lungs. This CAN be fatal. If you suffer from these symptoms, or suffer from recurrent lung collapses, seek emergency medical attention. If you suspect you may have thoracic Endometriosis, please, I urge you to have a talk with your physician. 75% of women who have pulmonary Endometriosis suffer from catamenial pneumothorax, which can cause her lung(s) to collapse during her menstrual cycle (usually starts within 72 hours of her menstrual cycle beginning). Endometrial cells have implanted themselves along the lining of the lungs and when menstruating may cause air and blood to enter the lungs improperly, causing a collapse. Symptoms include stabbing pain, shortness of breath, dizziness, fatigue, neck pain, and a “pop” or “cracking” sensation. And, yet, some women have absolutely NO symptoms and it’s discovered by accident during surgery. It’s most common among 30-40 year old women with Endometriosis.
A 31-year-old woman had a prior medical history of iron deficiency anemia and several months of acute bronchitis went to the ER due to shortness of breath that had been progressively worsening. A chest x-ray showed her right lung had collapsed and filled with fluid. They drained her lung with a chest tube, but due to complications nearly two weeks later, she returned for VATS surgery. During the surgery, endometrial lesions were found along the lobes of her right lung, which were removed. At the time this publication was written, she had one period since surgery, with no recurrence of the collapsed lung; however, she did complain of right-sided chest pain during her period. She had since started oral contraceptives. A 32-year-old woman had chest pain and shortness of breath for the past two months. Now with the onset of right abdominal pain for two days, she was admitted into the hospital. An ultrasound showed an endometrioma and fibroids. A chest x-ray showed a collapsed right lung. She received a chest tube and fluid was drained. Prior to being discharged from the hospital, the fibroids and endometrioma were surgically removed, and she hadn’t had any recurrence of symptoms two months later. A 35-year-old woman with a history of a prior lung collapse went to the emergency room because she was having chest pain and shortness of breath. She had a known history of Endometriosis and infertility, as well as a collapsed lung two years prior. She was not on her period. It was discovered that she had a collapsed right lung and was sent in for VATS surgery. Bluish-brown lesions were found her her pleura and diaphragm, which were all resected, removed, biopsied, and confirmed to be Endometriosis. As of one year later, she had not had any recurrence. A 36-year-old woman had gone to the emergency room because of abdominal pain, chest pain, shortness of breath and feeling faint. It was the second day of her period. She had a longstanding history of anemia, infertility, and a surgical Endometriosis diagnosis. The ER did some imaging studies, found fluid in her pleural cavity, and drained it – taking one litre of fluid! She also had some fluid in her abdomen. While at the ER, she collapsed and was rushed to surgery – they found blood clots in her pleural cavity, as well as suspected Endometriosis inside her lungs and on her diaphragm. They observed the blood was slowly leaking from the lesions…the lesions were cauterized (boo) and a portion of her lungs was resected. Biopsy confirmed Endometriosis and three months after her surgery, she still had not had a repeat collapse. She was referred to a gynecologist for future care. A 43-year-old woman who had had ablation surgery for Endometriosis several years and who took Provera woke up one night due to sudden pain in the right side of her chest. Three hours later she was having trouble breathing. So she sought medical care. She was found to have fluid buildup along her right lung, which was drained via a needle procedure. A day later, she started her period and six days later underwent VATS surgery to remove a hematoma and more fluid buildup. The biopsy of tissues revealed chronic inflammation.
A 47-year-old woman went to the ER complaining of right flank pain, dizziness, and sweating. Testing showed she had fluid in lining of her lungs and she underwent VATS surgery. Tissue that was removed was biopsied and found to be Endometriosis. After surgery, she went on hormonal suppression (didn’t disclose if birth control or other) and has not had a recurrence of symptoms. A 20-year-old woman went to a clinic because she had been coughing up blood. A month later, it happened again and she went to the hospital. A month later, again. Two weeks after her period, she was admitted for further studies, but her symptoms had ceased. Two years prior, she had undergone an abortion and had since taken contraceptive pills – then her coughing started about a month after she stopped taking the pill. Birth control pills were once more prescribed to her, but she did not take them and continued to cough up blood. Six months after her initial clinical visit, she underwent surgery and the biopsied tissue from her lungs tested positive as Endometriosis. While inside, her surgeons also found blood within her lungs. They removed what they could and she was symptom free at least four months after her surgery, without going back on the pill. A 37-year-old woman was admitted for treatment in 2010 for shortness of breath, chest pain, and coughing, which would usually come about during her period. She had previously been diagnosed with Endometriosis and had always suffered from painful periods and sex. Her mom, sister, aunt, cousin, and grandmother all also had Endometriosis (whew!). Also, her current complaints breathing issues had been an ongoing issue, but blood and hormone tests yielded no answers. She had several imaging studies (x-ray and CT) on her lungs, as well as an abdominal examination. Her pelvic examination and ultrasound were painful, and her CA-125 levels were elevated. They suspected a return of her Endometriosis. A secondary CT scan of her chest cavity led to the further suspicion of the presence of Endometriosis lesions in her pleural cavity. VATS surgery was performed and the lesions were excised. Biopsy confirmed the lesions were Endometriosis – and she was diagnosed with pulmonary Endometriosis…which vindicated all of her prior chest complaints. Not all women who have catamenial pneumothorax (lung collapses on their period) suffer from Endometriosis in/on their lungs. A study published in the December 2016 issue of Current Thoracic Surgery found one woman who had recurrent lung collapses on her period, and subsequent surgeries for those collapses, did NOT have Endometriosis. She just had collapses during her cycle. She was placed on birth control and it helped stop the collapses. Not everything is Endo…Just one more reason why conversations with your doctors and thorough medical histories are so important.
(https://bloominuterus.files.wordpress.com/2015/03/blausen_0742_pneumothorax.png) 10.7% of women who have pulmonary Endometriosis suffer from catamenial hemothorax and/or hemopneumothorax, which is a build up of blood (and sometimes air) in the pleural cavity , which is the space between our lungs and our chest cavity. During a menstrual cycle, that inflammation and blood of the Endo implants cause pressure on the lungs, which can lead to shortness of breath, chest pain, clammy skin, low blood pressure, and rapid heartbeat. 8.5% of women who have pulmonary Endometriosis suffer from catamenial hemoptysis. This is when the Endometriosis implants/adhesions are found on the lung or lung nodules. This may cause the woman to cough up blood during her menstrual cycle, as well as cause back pain, a “bubbling sensation” in her chest, fatigue, and may obscure lung imaging studies during her menstrual cycle. How does the Endometriosis get into the thoracic cavity and onto the lungs? Unfortunately, there are only theories: it spreads through the uterine veins into the venous system, it travels through the lymphatic system, we’re born with it there already, the prostaglandin (hormones) damage the lungs and pleural wall, it travels via the air circulated through the fallopian tubes, there are defects (holes) in a diaphragm which may allow the passage of these cells. The theories go on and on. Regardless of how it actually gets to the lungs, many believe that the recurrent hormonal changes that the implants go through during a woman’s cycle may weaken the lung lining, or the lungs themselves, causing the pneumothorax and these issues to occur. How is it diagnosed? Diagnoses may be delayed, and has been known to take as long as 8 months or more from the onset of symptoms until diagnosis. Imaging studies may rule out infection or malignancies, and may be helpful in supporting the suspicions of pulmonary Endometriosis. Just as surgery is the “golden standard” for diagnosing pelvic Endometriosis, VATS (video-assisted thoracoscopic surgery) is the “golden standard” for diagnosing thoracic Endometriosis. Some physicians may opt to perform a thoracoscopic and laparoscopic surgery at the same time to search the pelvic and thoracic cavities for Endometriosis.
(https://bloominuterus.files.wordpress.com/2015/03/thoracic_surgery-2.jpg) But how is it removed? A procedure called a thoracoscopy is performed, and is very similar to a robotic laparoscopy. Small incisions are cut along the right of left sides of your upper torso, rather than your stomach. The little tiny instruments many of us EndoSisters have become familiar with are used in detecting, destroying, or excising Endometriosis in the thoracic cavity. Portions of the lung may also be removed/resected for biopsy. Drainage tubes may be present after surgery and remain during the healing process. And treatment? It appears that thoracic Endometriosis and pelvic Endometriosis share the same treatment: hormones. It is believed that it is estrogen dependent. So Danzanol, progesterone, oral contraceptives, or GnRH treatments are used. Horrifyingly, I’ve read today that hysterectomies or removing the ovaries “is the treatment of last resort…” Can you imagine? Removing your lady bits for something that’s infected your lungs. I cannot. The horror. Especially when there has been no proof that a hysterectomy fully relieves your Endometriosis symptoms… Horror. In 2005, a 43-year-old woman received a hysterectomy, only to suffer a bilateral lung collapse in 2011. A thoracoscopy was then performed and Endometriosis implants were discovered and removed from her lungs and diaphragm. Again, I say : a hysterectomy is not a cure. And one more thing we already knew: there is no cure. Whether it be on your lungs, your uterus, your bowels, your urinary tract, your diaphragm, your ovaries, or anywhere else it decides to sprout : there is no cure. But there will always be hope. And we are all in this together, regardless of the location of our Endo. *Updated November 28, 2017* Resources: ATS Journals (http://www.atsjournals.org/doi/abs/10.1164/ajrccm-conference.2016.193.1_MeetingAbstracts.A3411)– 2016 publication; Unusual Cause of Pneumothorax ATS Journals (http://www.atsjournals.org/doi/abs/10.1164/ajrccm-conference.2017.195.1_MeetingAbstracts.A5672) – 2017 publication; A Different Kind of Premenstrual Syndrome ATS Journals (http://www.atsjournals.org/doi/abs/10.1164/ajrccm-conference.2017.195.1_MeetingAbstracts.A3526) – 2017 publication; An Uncommon Cause of Hemopneumothorax in a Young Female: A Case Report ATS Journals (http://www.atsjournals.org/doi/pdf/10.1164/ajrccm-conference.2017.195.1_MeetingAbstracts.A5508) – 2017 publication; A Vicious Cycle: An Uncommon Presentation of Thoracic Endometriosis ATS Journals (http://www.atsjournals.org/doi/abs/10.1164/ajrccm-conference.2017.195.1_MeetingAbstracts.A3512) – 2017 publication; Non Catamenial Endometriosis Related Pneumothorax ATS Journals (http://www.atsjournals.org/doi/abs/10.1164/ajrccm-conference.2017.195.1_MeetingAbstracts.A3517) – 2017 publication; Thoracic Endometriosis Presenting as a Catamenial Hemopneumothorax Catamenial Pneumothorax : Living with Lung and Colon Endometriosis (http://catamenialpneumothorax.org/)
Current Thoracic Surgery (https://www.researchgate.net/profile/Mahmut_Tokur2/publication/312294958_Tokur_M_Demiroz_SM_Sayan_M_Tokur_N_Arpag_H_Chest_wall_deformities_and_coincidence_of_additio M-Demiroez-SM-Sayan-M-Tokur-N-Arpag-H-Chest-wall-deformities-and-coincidence-of-additional-anomalies-screening-results-of-the-25000-Turkish-children-with-the-review-of-theliteratuere-Curr.pdf#page=43) Endometriosis Research Center (https://www.endocenter.org/ERC%20LUNGS%20SHEET.pdf) European Journal of Medical Research (http://www.eurjmedres.com/content/18/1/13) International Journal of Surgery Case Reports (http://www.sciencedirect.com/science/article/pii/S2210261217301244)– 2017 publication Japanese Society of Internal Medicine (https://www.jstage.jst.go.jp/article/internalmedicine/56/11/56_56.8265/_pdf)– 2017 publication Radiology Case Reports (http://www.sciencedirect.com/science/article/pii/S1930043317302418) – 2017 publication Society of Laparoendoscopic Surgeons (http://laparoscopy.blogs.com/prevention_management_3/2011/01/thoracic-endometriosis.html) Thorax (http://thorax.bmj.com/content/64/10/919.full.pdf)publication University of Southern California (http://www.cts.usc.edu/lpg-thoracoscopy-thethoracoscopyprocedure.html) US National Library of Medicine (http://www.ncbi.nlm.nih.gov/pubmed/14626406) – 2003 publication US National Library of Medicine (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3407434/) – 2012 publication US National Library of Medicine (http://www.ncbi.nlm.nih.gov/pubmed/27405565) – 2016 publication ~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
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64 thoughts on “Endometriosis & The Lungs” MEVDEMON
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SAYS: MARCH 25, 2015 AT 2:29 PM How awful. I knew it could travel to other organs but that must be very scary! I hope mine never spreads to the lungs. Good luck to everyone out there who not only is suffering with the more common endo problems and pains but these serious and more complicated issues. And thank you for raising awareness- I will certainly remember this if I ever do have any problems with my lungs in future Reply 1. BLOOMIN' UTERUS SAYS: MARCH 25, 2015 AT 2:34 PM Likewise on the “will certainly remember this…” Very scary! My doc said he removed Endo from my diaphragm, so this was a big eye opener when I was researching this today. Thanks for reading! And taking the time to offer feedback, and encouragement to other EndoSisters! Yours, Lisa Reply 1. MEVDEMON SAYS: MARCH 25, 2015 AT 2:36 PM Did they find it on your diaphragm during a normal lap? I never really know what areas they can get to in the operation but in sure my surgeon never looked very far! Reply CRYSTAL
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SAYS: JUNE 8, 2015 AT 5:34 PM my doctor keeps me on birth control around the month so I don’t have my period so things like that don’t happen when my cycle comes up am I the only one who’s Dr or Obgyn has said that to them that having their period Makes thinhs flare up and its not a good thing to have your period when you have endometriosis unless you want to have children right then. Reply BLOOMIN' UTERUS
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SAYS: MARCH 25, 2015 AT 2:40 PM My surgery was a robotic lap to remove cysts from my ovaries. It was just supposed to be an hour & a half under the knife. My wonderful surgeon opened me op and immediately saw evidence of Endo. Bless the man…he took 4 hours to thoroughly go through my body, locate and remove any Endo & adhesions that he could. I’m so grateful that he even knew to look up north. Found it on my liver, too. So I guess it all depends on who’s lookin’ and how deep they care to go, eh? Have you only had the one lap? When? Any recurrent symptoms since? blah blah blah, so many questions PS – I love your avatar. Reply 1. KITTEN SAYS: MARCH 27, 2015 AT 7:25 AM ^ My story is very similar! An hour long surgery turned into 4 hours. We were both (the doctor and I) shocked by the severity of adhesions, as neither of us suspected endo at all. Thank you for sharing the information, scary though it is. Reply 1. BLOOMIN' UTERUS SAYS: MARCH 27, 2015 AT 8:03 AM I’m so glad that your doctor knew what he was doing when he opened you up and saw it and was able to remove it while you were under, instead of having to schedule a 2nd surgery YAY! Reply JLAW
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SAYS: JUNE 1, 2015 AT 11:29 PM Did the woman you reference who had a bilateral lung collapse in 2011 have her ovaries removed in 2005 or just her uterus? Reply 1. BLOOMIN' UTERUS SAYS: JUNE 2, 2015 AT 9:03 AM According to the study, the woman had a total hysterectomy in 2005, so her uterus and cervix were removed. Unfortunately, the study doesn’t reference the status of her ovaries. You can read the study here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3407434/ Wonderful question! Reply LATISHA
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SAYS: JUNE 8, 2015 AT 5:42 PM I have had my cycles stopped since 2009. I still had laparoscopy surgery 2 years ago. Stopping my cycle does me no good. Good luck Reply BARBARA
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SAYS: JULY 7, 2015 AT 9:56 PM My symptoms didn’t even start until about 18-24 months after my total hysterectomy. The flares in the lungs doesn’t have to correlate with your cycle. Other than that note great information! Reply 1. ALEESEYCHAN SAYS: MAY 24, 2016 AT 5:20 PM Very true, I am on continuous birth control now since August 2015. I have pelvic, rib, and right sided chest pain almost everyday now. Reply KRISSY
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SAYS: AUGUST 24, 2015 AT 1:19 PM I am 6 weeks post op from VATS procedure to remove endometriosis in right lower lobe. I had hemoptysis with almost every period for about 3 years. The surgery was the hardest thing I’ve ever gone through and I’ve had several abdominal surgeries for endo, however I am glad I did it before it became life threatening. Has anyone else gone through this? Reply 1. BLOOMIN' UTERUS SAYS: AUGUST 24, 2015 AT 3:30 PM Krissy, I’ve posted your question to our Facebook page hoping to elicit more responses for you! Check it out here, if you have Facebook. If you don’t, let me know and I’ll paste the responses here for you. https://www.facebook.com/bloominuterus/posts/868101196614381?comment_id=868132223277945¬if_t=share_comment Reply SHAILJA
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SAYS: DECEMBER 7, 2015 AT 3:26 AM I m suffering from this disease past 4 years and i didnt even knew about it… Ive known it since 2 days.. I already had a lung surgery this year.. the doctors took it as a contagious disease maybe they’re not aware of this disease … I only cough up blood when i m on my periods i m only 17yrs old…. what can i do to cure this completely?? Reply 1. BLOOMIN' UTERUS SAYS: DECEMBER 7, 2015 AT 6:53 AM Unfortunately, Shailja, there is no cure. They can operate to remove the Endometriosis implants and scar tissue, but it may grow back. They may put you on birth control pills, injections, or an IUD to control your hormones. Many women have found some relief this way, but many have not. You can alter your diet to cut out inflammatory foods like sugar, red meat, or caffeine. I am so sorry for your diagnosis. Just know that you are not alone in this. Reply MONIQUE W
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SAYS: FEBRUARY 2, 2017 AT 10:36 AM Hello. I realize this post is old but I am trying to connect with others that have similar symptoms as my daughter. Reply KELSEY WILSON
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SAYS: SEPTEMBER 8, 2015 AT 8:25 PM I was diagnosed with endometriosis August 6th 2015. I’m currently in the ER due to experiencing severe pain in my stomach, lower back and neck. I have a very hard time walking due to the pain. Hoping something can be done for the pain. Anyone else who suffers from endometriosis just know your not alone in the fight. Reply 1. JASMINE SAYS: MARCH 29, 2016 AT 10:49 PM I started seeing a chiro weekly and extra when needed for my period pains. My lower back always hurts and gets out of whack 2 days before I start… and continues until after day 1. I go in for an adjustment and instantly half my pain is gone! Some months ae worse than others and I have a plethora of pain killers, but going to the chiro helps a ton too! …I’ve been battling this for 15 years now although wasn’t formally diagnosed until 2012 when I developed a lump and couldn’t walk until the lump (size of large bouncy ball) was removed from just above my uterus. ..that was a fun call to get (took a week for them to test and verify it was endo). Reply CARLALOUISE89
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SAYS: DECEMBER 22, 2015 AT 5:16 PM Can this happen to younger women? (I just turned 26.) My endometriosis has recently gotten far worse, and I’m only allowed 2-3 periods now. However, I’ve been having some problems with random chest pain (it started last year, I think) when I was having more regular periods. The doctors told me I just had bad reflux and had to deal. But it sounds exactly like what you’re talking about. And since I haven’t had a period for a few months, I still get chest pains, weird shortness of breath, and a rapid heartbeat, but it’s not like it was before. Before, the pain was so bad I barely slept for three days. I’m just a little worried now. Reply 1. BLOOMIN' UTERUS SAYS: DECEMBER 22, 2015 AT 9:29 PM Never hurts to talk to your doctor about it. I know several readers who have Endo on their lungs. Reply 1. CARLALOUISE89 SAYS: DECEMBER 22, 2015 AT 9:47 PM Thank you! Reply JANAE
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SAYS: FEBRUARY 14, 2016 AT 10:20 AM I’ve had symptoms of thoracic endometriosis since I was 26 and have been ignored by doctors until March 2014 when I had an emergency appendectomy. At that time I was 33. I was in the ER for bleeding from my belly button (umbilical endometriosis; which My symptoms of that had also been ignored until this) CAT scan showed appendicitis which was actually endo. Anyway…the surgeon confirmed endo on my diaphragm but was never removed. Fast forward to October that same year, I had the dreaded lung collapse. The surgeons repaired my lung but I still have endometriosis on both diaphragms and my right lung. I’m excited to be traveling to the Center for Endometriosis Care in Atlanta, GA! I will have excision surgery for all the endometriosis as well as VATS to remove the endo from my thoracic cavity. You are correct, hysterectomy is NOT A cure for endo! Thank you for a great article of awareness! Reply 1. BLOOMIN' UTERUS SAYS: FEBRUARY 14, 2016 AT 11:14 AM Janae, thank YOU for sharing your experience! It’s mind boggling to me how often symptoms are discredited or ignored. And I am SO grateful you’ll be going to the Center for Endometriosis Care soon!! Please keep us posted on your recovery and how the operation went. I am told time and time again that Endo on the lungs is so exceptionally rare that I’m just scaring women into believing they have it. Well, I don’t believe it’s as rare as we are told. Women like yourself (AND umbilical endo!) prove that. I think it’s just lesser diagnosed…or paid attention to. Wishing you luck on your upcoming procedures! And recovery
Yours, Lisa
Reply 1. JANAE SAYS: FEBRUARY 14, 2016 AT 1:08 PM I’m in agreement with you! I don’t think it’s as rare as they say. In fact, I’m part of a Facebook troop with over 2,000 women who have been diagnosed or are experiencing the symptoms. I believe it’s lack of education and doctors, unfortunately, passing us off to someone else and getting no where with answers. I also have Adenomyosis, so I’m choosing to have hysterectomy for that. But all endo will be excised. Ready for my life back!! Reply 1. BLOOMIN' UTERUS SAYS: FEBRUARY 14, 2016 AT 1:11 PM Again, please keep us all posted. And if you'd like, you can feel free to Share Your Story, which will be published here and shared on Bookface. If you'd like to wait until after your excision, hysto, and recovery, feel free. But…no pressure, rush, or obligation. I'm just so proud of you for hunting down other Sisters, and getting into The Center! https://bloominuterus.com/share-your-story/ Reply JANAE
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SAYS: FEBRUARY 14, 2016 AT 1:15 PM I would love to tell my story! Anything to help others recognize the symptoms and create more awareness. ….I don’t mind doing one now and then another after my surgery and recovery, if you’d like? Reply 1. BLOOMIN' UTERUS SAYS: FEBRUARY 14, 2016 AT 1:16 PM I LOVE that idea!!!!!!!! Thanks, Janae! Reply WYVERNSROSE
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SAYS: APRIL 1, 2016 AT 5:38 AM This is what we think has been going on with me for DECADES…. When the endo isnt treated i am an acute asthmatic….and during my cycle I am prone to opportunistic bacterial pneumonia infections…..my immune system takes a complete beating….hormone treatments keep me out of hospital the depo for 9 months kept me functioning like a perfectly normal person even throughout devastating black Saturday Bush fires when we were surrounded by 5 fire fronts and the sky went black and rained embers on us which should have landed me in hospital, but didnt because the treatment worked…..i have had symptoms for 20 odd years in relation to my lungs….diagnosed with asthma and COPD and all symptoms vanish when the endo is properly treated….. But even after approaching 7 surgeons i cant convince anyone to look. Or that it is a possibility…. Reply 1. BLOOMIN' UTERUS SAYS: APRIL 1, 2016 AT 6:03 AM Keep trying, hun. Are you in the US? What about writing to one of the supposed Endo experts and seeing if they’ll look at your case file? Reply 1. WYVERNSROSE SAYS: APRIL 1, 2016 AT 6:49 AM Australia….general attitude is that I have 3 kids so why treat it…… Reply 1. BLOOMIN' UTERUS SAYS: APRIL 1, 2016 AT 7:13 AM I wish they would stop dismissing this! I’m so sorry
But *yay* on your kiddos!
Reply 1. WYVERNSROSE SAYS: APRIL 1, 2016 AT 7:27 AM my kiddos are awesome…3 girls…all at high risk of endo…we dealing with the first years of puberty with all 3 of them….welcome to read about them on my blog Reply WYVERNSROSE
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SAYS: APRIL 1, 2016 AT 6:51 AM it makes me very very very very very sick and has landed me in hospital often enough… Reply 1. BLOOMIN' UTERUS SAYS: APRIL 1, 2016 AT 7:14 AM All I can think of is keep trying to find a doc who will listen to ya. Reply JAMIE
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SAYS: AUGUST 2, 2016 AT 7:24 PM Wyvernsrose, Mine presented the same way. “Pneumonias” started about 5 years ago. Just started Lupron. Found 2 complex cysts in my lung that pulm wants to biopsy. I am stalling. Want to see if Lupron works first. Reply 1. WYVERNSROSE SAYS: AUGUST 2, 2016 AT 10:36 PM At this i just need them to look they are refusing too. The mirena hasnt stopped my cycle completely i still get spotting and the whole bus load of lung issues with it. Reply KATHLEEN TRUAX
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SAYS: APRIL 3, 2016 AT 9:37 AM In 1988, I had endometriosis surgery. I was 28 yrs old at the time. It was so thick that the laparoscopic procedure the Doctors tried to perform would not work, so I received a bikini cut. The endometriosis was so thick throughout my abdominal cavity, covering almost all my organs, even on the lower lobes of my lungs. Even though I had a total hysterectomy at 34 yrs of age, I don’t believe for one moment that the removal of the uterus & ovaries removes all the endometriosis totally. I was placed on Danazol for 6 months. Today I am 56 yrs old and still suffer from chronic pain & fatigue. Just like cancer cells that continue to grow and spread, I believe endometriosis is capable of doing the same! Reply 1. BLOOMIN' UTERUS SAYS: APRIL 3, 2016 AT 9:48 AM Kathleen, I am so sorry you are in pain.
And I agree completely with you…
Reply 13. Pingback: Surgeries for Diaphragmatic Endometriosis | Bloomin' Uterus 14. ALEESEYCHAN SAYS: MAY 24, 2016 AT 6:02 PM From what I have learned through Nancy’s Nook Endometriosis discussion and education they are now finding that we are born with the areas the disease will infect. A study done through stillborn infants that had the growths in each of the areas it would reside in including areas outside of the pelvic region. While it cannot spread with time it can infiltrate deeper, destroying tissues and organs in the process. It also steadily gets worse with time. I’ve had this since I was born, I’ve had a lot of the symptoms without even knowing it. Always sick, strange alergic reactions with no known cause since I was a child, extremely painful periods since age 12, and rib pain that occured in my late teens. Over time I have steadily gotten worse. Last year being the turning point and what lead me to finally have a diagnosis. It started in April 2015, my painful period pain became even more painful. It tested my sanity, debilitated me. And at the time I was bleeding for 5 weeks straight going through super tampons almost every hour. The scariest part was the blood clots, which were the size of my palm. I don’t remember if I had any rib pain at this time I was pretty preocupied by how terrible the pelvic pain was. Fast forware to August 2015 I had my first disgnostic ablation procedure done. They found the disease everywhere, including my bowels. I was told I was the worst case they had ever seen. I was thankful for 5 months of mostly pain relief but the pain crept back this March 2016 and with it so did the rib pain. I have been tracking my symptoms in a journal and was surprised to see I have pain now almost every day. My symptoms usually consist of pelvic pain, pain in one or both sides of ribs, right sided chest pain, right shoulder pain, intense upper back pain (esspecially in my shoulder blades) and now some more strange symptoms. Last week I had decided to go off my continous birth control (northindrone) my thought was maybe this was adding to the pain because in a recent survey they found half of lung collapses occured outside of the mentrual cycle while on continous birth control. Well a few days off of it I had felt what I can only describe as someone squeazing my right lung and not being able to breathe. It lasted aboit 10 seconds but was still scary. Then 2 days later I felt what felt like a bubbling sensation around my left lung. This occurred again yesterday. I am currently doing everything I can for myself, following the endo diet religiously, natural remedies like essential oils and raspberry leaf tea, and keeping my stress under control. Interestingly enough when I started taking my birtg control again the pain in my ribs and chest lowered signigantly within hours. It’s very hard to read my body right now but still tracking everything. My hope is that I can see either Dr.Mosbrucker or Dr. Sinervo, both familiar with extensive disease. I have made myself a very educated patient and hope others can do this too
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Reply 1. MYRIAM SAYS: SEPTEMBER 23, 2016 AT 7:12 AM I can’t stop crying as I get knowledge and read the experiences so many women are going thru for the first time. learning how incapacitated and uncontrollable it can be. I am the mom of this wonderful gal and I have learned today that she has this horrific disease which is taking her lungs. I can’ t protect my baby. I am so sorry for all you too. Why is it, that it takes so long for doctors to react to it, knowing that this is something that spread to the organs? I have taken health for granted and it is hitting were it hurts me the most: My child. These doctors you mentioned, where are they? Reply 1. BLOOMIN' UTERUS SAYS: SEPTEMBER 23, 2016 AT 7:30 AM Myriam, I am so sorry to hear of your daughter’s pain and your torment. One day, one day our illness will get the recognition and research it deserves. And, as my mom says, “there’s a doctor out there somewhere who is looking for a cure.” Reply JAMIE
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SAYS: JULY 6, 2016 AT 8:02 AM I’m having surgery in August for suspected endo on the diaphragm and thoracic endo. My CT scans have shown nodules on the lower loves of both lungs. I’ve had pain in my right shoulder for years and never thought about it being anything more than maybe overuse. When I started getting severe pain in my chest and shortness of breath she is the one who suggested the possibility of endo there given my history of it. I can’t wait for my surgery. When I have my pain it’s so bad it feels like what I imagine a heart attack feeling. I actually went to the ER the first time thinking that’s what it was. I’m praying it’s not on my heart as well, because my scans did show slight pericardial effusion. Thank you for what you are doing, and I am trying to figure out the best avenue for spreading awareness with my story and helping others. Reply 1. BLOOMIN' UTERUS SAYS: JULY 6, 2016 AT 8:08 AM Again, Jamie, I am SO excited for your upcoming surgery! Just to have an answer!!!! Please keep us posted. And you can always share your story here on our blog (at the top in the right corner) any time. We’ll share it here and on Facebook. You can also write your local politicians to try to help spread awareness and press funding for research. You can start blogging, write articles in local e-zines, start a support group in your area, host a walk, the possibilities are endless. You can do GREAT things!! Reply BLOOMIN' UTERUS
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SAYS: OCTOBER 17, 2016 AT 11:40 AM Hi Jamie! Just checking up on you – how was your surgery and recovery? What’d they find? How was your recovery? And, more importantly : how are you doing now? Yours, Lisa Reply 1. JAMIE SAYS: MAY 9, 2017 AT 9:54 AM My surgery went really well! I ended up finding out that my right ovary was torsing on its own blood supply causing a lot of the pain I was having. Apparently neither of my ovaries had much support. I ended up having my right one removed. There was also lots of endo that had either been missed at my first surgery, or had come back. Thankfully there was none on my lungs or heart. I felt I was finally going to have relief!!! Apparently that was not the case. December of last year I had another surgery. This time to remove my left ovary after a large cyst had formed. It was thought to be an endometrioma, but turned out to be a dermoid cyst. Again I had 15 spots of endo that was back!!! I thought for sure this was going to bring relief!!! I have now been having low belly pain again for about a month. Over the last couple weeks the chest pain and shortness of breath has also returned and progressively getting worse very quickly. I have an appointment tomorrow to try to figure out what is going on. I’m so nervous for the endo to be there again. I’ve already had 3 surgeries in the last 2 years just for endo!!!! It’s really messing with my mind this time around. I am trying really hard not to let the depression get to me. Thank you for checking up on me! I also started a blog, I haven’t written in a while, but started getting a new post ready just yesterday, so I am hoping to get back into it! Reply 1. BLOOMIN' UTERUS SAYS: MAY 9, 2017 AT 9:58 AM I’m so sorry to hear your pain is back That’s been going around with a lot of EndoSisters lately; so you’re not alone in this roller coaster or depression. I wish I could take it all away. Hang in there. I’ve subscribed to your blog so looking forward to following youuuu.
Reply 17. Pingback: 2016 Bloomin’ Uterus In Review – Bloomin' Uterus 18. SUSCWILLIAMS SAYS: JANUARY 11, 2017 AT 3:07 PM I was diagnosed with Catamenial pleurisy last summer. After surgery though it turned out my lungs were healthy. It was the bowel spasm-ing from the foods I was eating that was causing inflammation and pain in my left lung! Follow my blog as I embark on a diet reset to find out what foods are causing the pain!!!! Reply SUSCWILLIAMS
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SAYS: JANUARY 11, 2017 AT 3:10 PM https://expeditionendometriosis.wordpress.com Reply JAMIE ANNETTE
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SAYS: JANUARY 18, 2017 AT 6:47 AM Hi! I wanted to share my experience with all this. Mine is a little backward from what you’ve shared here. For years, throughout my early and mid-20’s I had chest pains. I went to the ER a few times & was always sent home due to suspected heartburn or “anxiety.” It was extremely frustrating because I know my body & knew something more serious was at play. Finally in 2015 (I was 26 at the time) I had an episode that was pretty much excruciating. I researched it and drove myself to the nearest Urgent Care and asked for a chest X-ray. I had a “spontaneous pneumothorax.” Never heard of it before! I was suspecting a serious case of pneumonia or something. My left lung was totally collapsed and they could not get it to reinflate. I spent about 2 weeks in the hospital and ended up having major surgery (VATS) to remove part of the lung and to adhere the lung to the chest cavity to hopefully prevent further collapses. Beyond the typical major-surgery setbacks and occasional flare ups I’m totally fine now! Except – flash forward a year. Once I healed up from my surgery my husband and I started trying to conceive our second child (DD #1 was born in 2013). We had unexplained infertility, the doctor said. We were both very healthy & everything was timed properly. In one of the tests done, though, I did show elevated levels of CA-125 (is that the marker for endo? Can’t remember exactly). However, I guess I was asymptomatic. So I explained to my OB/gyn about my Pneumothorax history and that it did seem that some of my problems coincided with my period–I was actually on day 2 of my cycle when I ended up in the hospital the year before! So, she looked at me like an anomaly (which I guess it probably is pretty rare?!) and told me I need to have the lap done. So, here we are! I hope the lap works and helps us conceive. I had no problems at all with the chest pains while I was pregnant with my daughter, so I’m confident that it really is a temporary cure! I’ve always wanted all the babies, so I’d be OK with just staying pregnant in order to control the endo (assuming I can GET pregnant, that is…). Haha. Anyway, what long term protocols can I take? It’s nice having answers as to what I’ve been dealing with all these years but it’s also kinda upsetting that it’s something that doesn’t actually have a “cure.” Let me tell ya, lung collapses are no joke and it’s a huge pain (literally and figuratively). Does BC help (like once we are dong having babies), or does it just exacerbate the problem? I’m rambling now, sorry. Thanks so much for the info! Reply 1. BLOOMIN' UTERUS SAYS: JANUARY 18, 2017 AT 8:13 AM Hi Jamie! Rambling is good Get it allll out! To answer some of your questions (with the best of my knowledge): 1) yes, elevated levels of CA-125 can be considered a possible identifier of Endometriosis, although it’s not a guaranteed answer. Many women with normal CA-125 levels have Endometriosis, and some with elevated levels don’t have Endometriosis. 2) make sure your lap surgeon knows what do to IF you do have Endometriosis – excision is critical – they CUT OUT the lesions and scar tissue rather than ablation/cauterization (burning it off). Think of a melon baller: cut out the bad tissue, leaving the good. Burning just sears the top. 3) expect at least a 2-week recovery…if you’d like more feedback on what recovery is like, let me know. 4) Some women have eased their symptoms with a change of diet, cutting out certain foods/drinks that are may cause hormonal changes or inflammation – look u The Endo Diet in our search feature for lots of info. 5) some women (myself included) may have temporary relief on birth control. I took a continuous pill for a year and a half, only had my period 2-3 times during that time, but my Endometriosis continued to grow and was “worse than before” when I had my second lap last year. Most importantly: hang in there. Keep pushing for answers and for your health! And good luck with trying to conceive!! ~Lisa
Reply 21. Pingback: Feel Good Fridays – Bloomin' Uterus 22. ARDEED SAYS: FEBRUARY 5, 2017 AT 9:46 AM I was diagnosed with endometriosis of the lung 4 years ago and underwent a total hysterectomy a year afterwards. Prior to my diagnosis, I would cough up blood during my period’s heaviest day – which also lined up with it being usually 3 days in. I would have chest pain, in the same area every month. I was told that a hysterectomy would be best for me since I was already having extreme periods that would last for 10 days, twice a month. Removing my ovaries was supposed to remove the chance of it happening again. I had the procedure 3yrs ago, and although I haven’t coughed up blood anymore, I still have the same chest pain every now and then and even difficulty breathing sometimes. I always tell my husband it’s the same exact feeling but we were told the cells would die off on their own without ovaries feeding them. Now after reading this, I feel relief knowing something could actually still be wrong. It’s not just in my head. Thanks for this write up. Reply 1. BLOOMIN' UTERUS SAYS: FEBRUARY 5, 2017 AT 12:41 PM You are so welcome! Never be afraid to bring it back up to your doctor.
Reply 23. Pingback: Feel Good Fridays! – Bloomin' Uterus 24. BLOOMIN' UTERUS SAYS: APRIL 20, 2017 AT 1:39 PM Reblogged this on Bloomin' Uterus and commented: One of our Readers, Monique, has a question for our EndoSisters: I have read your article on endo on the lungs. I have been trying to get in contact with anyone that has had (or has heard of) thoracic endo being successfully treated (no further catamenial hemoptysis or lung collapse) by excision surgery using VATS without the use of non-surgical treatment. If that’s you, please drop a comment below. She’d love to hear from you. Reply ONAGH
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SAYS: APRIL 24, 2017 AT 3:20 PM My Pulmonary (Thoracic) Endometriosis was localized to my Sinus Cavity. Apparently I dodged quite the bullet. Reply ALEX MOOK
SAYS: APRIL 29, 2017 AT 3:07 PM I am a father of a 14 year old. Over the last two years, she has had a lot of menstrual pain and so has been put on Lo Estrogen which has helped control the cramping to a good degree. We are also lucky she has the most wonderful and communicative OBGYN any woman could wish for. About 2 weeks ago, she had severe pain that happened when she would breath, radiating to her shoulder, etc. She decided to just go to sleep but woke us up at 3:00 AM with even more pain so we went to ER where a chest x-ray showed a small pneumothorax. Some hours later we went home and then consulted the thoracic surgeon a few days later who said it was small and would heal up within 10 days. They did another chest x-ray 48 hours after her ER visit and noticed the pneumothorax did not get worse so no surgery or chest tube was necessary. The surgeon said it may or may not recur down the line. We brought up the event with her OBGYN who said it is very possible it could have been a catamenial pneumothorax as she has another patient that had endometriosis that was not on birth control and she was put on birth control to prevent further lung episodes. I am confused since the estrogen medication is supposed to suppress or control endometriosis, but my daughter is also on a low dose. Anyway, we have entered a new and anxious period in our lives, but we just need to take it bit by bit and move on. I am here to learn more about what others have gone through similar to our situation. Thanks, alex Reply 1. BLOOMIN' UTERUS SAYS: MAY 8, 2017 AT 11:19 AM Alex, I updated the blog entry today to include five new case studies, including a woman who WASN’T on her period when she suffered a collapsed lung due to Endometriosis lesions on her pleura lining and diaphragm.
Reply 27. Pingback: Feel Good Fridays! – Bloomin' Uterus 28. Pingback: Feel Good Fridays – Bloomin' Uterus 29. Pingback: Feel Good Fridays – Bloomin' Uterus
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