If you’ve been a long-time follower of the blog, you may remember in 2014 when my surgeon found Endometriosis on my diaphragm. Several years later, it had completely disappeared (yay!). And it hasn’t been found in any of my subsequent surgeries. This research has been a lot of fun because of my own personal journey.
We’ve previously shared Endo Lady UK‘s experience with her own diaphragmatic Endometriosis, as well as a surgery to remove diaphragmatic Endo. We’ve even had a few brave readers, Lyndsay and Tabitha, share their own stories about endo on their diaphragm.
Diaphragmatic Endometriosis is considered extremely rare. Some studies stated that it’s only in 1-1.5% of patients with Endometriosis. So I wanted to explore the published cases and share them with you. And express that such a rarity doesn’t mean you may not have it. You may. You may not.
So, what are the symptoms? Read on!
Here’s a list of symptoms I’ve seen that diaphragmatic endometriosis sufferers reported in the case studies below. You may have some, none, or all of these. And they may be indicative of endo on your diaphragm, or not. You know the drill: it may be endo. It may not. It may be something else completely. But I wanted to lay these out for you in one simple place…if nothing else, to be a springboard to a conversation with your doctor. And several of these symptoms coincide with Endometriosis and the lungs as several instances of collapsed lungs also involved diaphragmatic endo..
- Coughing, with or without blood
- Upper arm and/or shoulder pain; usually on the right
- Upper quadrant pain; usually on the right
- Pain under the lower ribs
- Collapsed lung(s)
- Painful breathing
- Difficulty breathing
- These symptoms may worsen around the time of your period, although some people have symptoms constantly
- Some patients had zero symptoms
- Some patients exhibited these symptoms even after a hysterectomy
Diagnosing diaphragmatic Endo, of course, can only truly be done with surgery and biopsy, but here are some diagnostic tests and tools that may be done along the journey:
If you do wish to discuss the possibility of diaphragmatic Endometriosis with your healthcare provider, please be sure to write down your symptoms, when they occur, how long they last, how bad they hurt, what other symptoms you have at the same time, etc. The more details you have, the more you can offer while providing the medical history of your complaints.
Feel free to stand up and point to portions of your body that hurt. Or offer a drawing to your physician of specific areas and locations of your pain.
Use descriptive terms. Does the pain burn? Travel across your body? Cramping? Does it linger or fade quickly? Don’t be afraid to let it all hang out.
The devil is in the details.
The always-present physical examination. You’ll likely be pushed, prodded, poked, palpated, and pressed. If something hurts when they push down, let them know. If it feels weird or maybe doesn’t hurt at all, express that, too. The more information they have, the better.
Our favorite…Endo may or may not show up on imaging studies. But some imaging studies came in particularly helpful in the studies below.
X-rays, usually won’t show squat.
Ultrasounds can sometimes show when things are amiss.
CT Scans and MRIs oftentimes showed masses where they shouldn’t be in the cases of diaphragmatic Endometriosis below. That being said; however, it’s not the end-all-be-all of pre-surgery diagnostics. You can still have a lesion and it not show up on studies. So if you get a normal result, but continue to be in pain, don’t be afraid to push for options.
Of course, I’m a huge proponent of excision surgery, but I know it’s not for everyone! And oftentimes other avenues must be exhausted before insurance will approve one. Every journey is different!
Plenty of doctors will push pharmaceutical treatment for symptom management, either before or after a surgery. The options appear to be what they always are: hormonal birth control, some type of pain management, or suppressive medications such as Lupron Depot, Orilissa, Danazol, etc.
Here’s where the fun begins. I’ve read about plenty of laparoscopic surgeries to find and remove diaphragmatic Endometriosis, but also several that involved a VATS surgery (video-assisted thoracoscopic surgery).
For those of us not in the know (I know I wasn’t before today), a thoracoscopy is a surgery where a teeny camera is placed through an incision in the chest, which allows visualization outside the lungs and into the space between the lungs and chest wall. It’s usually considered minimally invasive.
And there’s choices of ablation versus excision…but you know my thoughts on that.
Some women (in the studies below) have even had the nerves around these areas of the body burned in order to achieve symptom relief.
And, always always allllways, Endometriosis is confirmed through pathology and biopsy results.
In 1994, La Revuew de Medecine Interne published a study of a young woman who was diagnosed with diaphragmatic Endometriosis and did not have any history of collapsed lungs. The 21-year-old complained of tight pain along her phrenic nerve (the nerve that runs along the lungs and diaphragm) for a year-and-a-half. During an exploratory surgery, they found pelvic Endometriosis lesions on the underside of her diaphragm. After reviewing medical literature for previous cases of diaphragmatic Endometriosis, the authors “confirm that imaging studies are of little value.” So, please never be discouraged if your imaging study yields normal results and you know there’s something hanky. You know your body. And you know when it doesn’t feel right.
In 1995, the Journal of Obstetrics & Gynaecology published a study of a 24-year-old patent who right right shoulder pain when she was on her period. She also complained of painful periods and had been taking a combined birth control pill. Her shoulder was normal upon physical examination. And the rest of her body was also normal. Blood tests were, of course, normal except for elevated levels of CA-125. A chest x-ray and pelvic ultrasound were also normal. They suspected Endometriosis and opted for an exploratory laparoscopy. She had lesions on her uterasacral ligaments and her ovaries were “tethered” by adhesions. They also found four lesions on the right underside of her diaphragm. There is absotely NO mention of any excision or ablation of the lesions around her ligaments, but they stated due to the hazards presented with the diaphragm they opted to leave the spots alone. They treated her with six months of Buserelin nasal spray (a GnRH agonist) three times a day and and add-back therapy (norethisterone). She remained symptom free.
The Japanese Journal of Thoracic Surgery published a 1999 study of a 30-year-old woman who had two right collapsed lungs within two months of each other; both at the start of menstruation. During surgery, they saw “blue berry spots” and a “pinhole” on her diaphragm. They resected a small portion of her diaphragm and sent it off to pathology, which of course came back as Endometriosis. She opted out of hormonal therapy, but unfortunately had recurrent lung collapses and was later placed on five months of Lupron Depot. She had no further recurrence seven months after surgery when the study was written.
In 2002, Dr. Redwine published a study in Fertility and Sterility. He found that seven out of eight patients that underwent laparoscopic resection of diaphragmatic endometriosis lesions resulted in “complete eradication of symptoms.” The eighth had good symptomatic reduction.
The journal of Obstetrics & Gynecology published a study in 2004 of a 50-year-old woman who had a hysterectomy 10 years previously that removed her uterus, right fallopian tube, and right ovary. She went to the hospital with complaints of upper right quadrant pain. A CT Scan found a lesion on her right diaphragm and an exploratory laparoscopy was performed. She had a 4cm cyst on her diaphragm, which was smooshing into her liver. It was thick and contained “chocolate-like material” (sound familiar?). The mass was excised and pathology confirmed it was an endometrioma. There were no other lesions or cysts discovered in her pelvic cavity. The authors stress that although rare, endometriosis should not be excluded as a possible diagnoses even after a hysterectomy.
Suffer from chronic shoulder pain? In 2006, Rheumatology published a study of a 25-year-old woman who had a three-year history of right shoulder pain. It frequently started with her period and was managed with Ibuprofen. A physical examination, x-rays, and blood tests were all normal. MRIs were conducted of the shoulder and of the diaphragm, which showed evidence of recent hemorrhaging of her diaphragm. A laparoscopic surgery was performed and the diaphragmatic lesions were ablated (ugh). After surgery, the client was on a continuous progestogen pill and her symptoms were resolved.
Dr. Camran Nezhat and colleagues published a study in the September 2009 edition of the Journal of Minimally Invasive Gynecology. It discussed the cases of four women who were diagnosed with diaphragmatic endometriosis from June 2008 through September 2008. All four had a medical history of chest pain, three complained of pelvic pain, two had collapsed lungs, two had previous diagnoses of Endometriosis, and three had been on some sort of hormonal treatment. All were surgically treated with a combination of laparoscopy and thoracoscopy procedures. Nine months after their surgeries, the four women remained free of chest pain, and only one had recurrent pelvic pain. They suggest for patients with pelvic and chest complaints, or exhibiting other symptoms of diaphragmatic endometriosis, that a combination of both laparoscopy and thoracoscopy be considered for surgery.
In 2010, the Interactive CardioVascular and Thoracic Surgery journal published a study of a 43-year-old woman who went to the emergency room due to right chest pain. A physical exam revealed diminished breath sounds in her left upper chest. A chest x-ray showed a collapsed right lung and the right side of her diaphragm was raised higher than it should be. A CT scan showed that the liver and a part of her colon had herniated up and into her thoracic cavity. As it wasn’t deemed an emergency, she was sent home to seek a specialist.
Two weeks later, she was seen by a specialist and reported a history of numerous episodes of pain near her scapula, usually a day before her period started. She also complained of right chest discomfort, difficulty breathing, and constipation.
Surgery began with a look in her thoracic cavity. Her liver, gall baldder, and colon had herniated up and into her thoracic cavity as her diaphragm and ruptured in a small area. There was also a small gray nodule discovered on the edge of her diaphragm. They placed her herniated organs back where they belonged, excised the nodule, and repaired her ruptured diaphragm. Pathology came back that the nodule was Endometriosis. The authors suspect that the “invasiveness of endometriotic tissue cause diaphragm fragility, which finally led to its complete rupture…” After surgery, she was given six months of “ovarian suppression therapy.”
In the September 2012 edition of Surgical Endoscopy, a review of seven years of diaphragmatic endometriosis patients was reviewed. Over the seven-year period, 3,008 patients were diagnosed with pelvic Endo. Of those, 46 had diaphragmatic Endo. Each underwent surgery. All but three had excision surgery. The remaining three had “superficial endometriosis” and the lesions and/or nearby nerves were burned (diathemocoagulation). The study doesn’t discuss their surgical outcomes, symptom relief, or recurrence, but does insist that the treatment requires multi-disciplinary care.
The Korean Journal of Obstetrics & Gynecology Science published a 2012 report of a 40-year-old woman who had a recurrent spontaneous collapsed right lungs. Her lung only collapsed during her periods. She had a chest x-ray and a CT scan done, which led to a surgery. They found lesions on her diaphragm, which they resected and biopsied. After they received the pathology results of Endometriosis, she was treated with a GnRH agonist. Unfortunately, the abstract doesn’t mention how she fared after treatment.
In 2018, the International Journal of Fertility & Sterility a 20-year-old woman complained of severe pain over the last year while she was on her period. She had no other complaints. The physical examination revealed two masses affixed to her uterus, and an ultrasound confirmed they were cysts and adhesions. An MRI was conducted and showed normal upper cavity findings (liver, spleen, pancreas, kidneys, lungs), but confirmed the masses along her uterus and sigmoid colon.
Laparoscopic surgery was performed and they found Endometriosis throughout her pelvic cavity, as well as ovarian cysts and adhesions. During that surgery, they explored what they could of her upper cavity. Five to six “areas of superficial endometriosis” were found on the center and right sides of her diaphragm. Those lesions were burned away. An endoscopic exploration of her thoracic cavity was not conducted since her diaphragmatic endo was superficial and she had no symptoms of chest pain, shoulder pain, or collapsed lungs to indicate further involvement of the diaphragm. She was treated with “suppressive hormonal medications” after her surgery.
In the July 2020 publication of The New Indian Journal of OBGYN, a 47-year-old woman complained of a 10-month old cough, sometimes spewing up blood. She also had right upper quadrant pain and right arm and shoulder pain for the past 15 years. The pain and bloody-coughing seemed to follow her menstrual cycle. She had been told previously that she had Endometriosis, but this was a clinical diagnosis with no surgery. Chest x-rays and a physical exam were normal. An ultrasound found a small mass on the right half of her diaphragm, which extended into the right lobe of her liver. Further imaging studies found the mass also extended into the lower lobe of her lung, too.
They presumed it was Endometriosis and a liver biopsy confirmed a diagnosis of liver Endometriosis. Due to her age and “perimenopausal status” (and I’m also assuming the risks and potential complications involved with liver and lung resections) it was decided that surgery would be avoided. Rather, she was treated with GnRH agonists or progestagens. She was non-compliant with the medication and was later readmitted into the emergency room due to ongoing pain. A CT scan found that the endometrioma on the liver had enlarged by 4 cms and the lung lesion was more pronounced. The patient was “counselled” and she agreed to take the drugs with add-back therapy. Three months later, a CT scan found the nodules had not grown. They are hoping she can continue pharmaceutical management of her symptoms.
The authors found that x-rays may help diagnose thoracic Endometriosis, but a CT scan and MRI may be more helpful in further identifying Endometriosis lesions or assist the physicians in ruling out other theories. The study closes on a very knee-jerk-reaction-inducing sentence (well, at least for me):
“Hysterectomy with bilateral salpingo-oophorectomy removes the underlying cause but if hormone replacement therapy is initiated there may be then be a recurrence of thoracic endometriosis.”
Bleh. What a way to close it out. Removing the uterus, tubes and ovaries isn’t a cure, Doctors. It may help some women with symptoms, but it’s not “the underlying cause” of Endometriosis. *sigh* Regardless of my state of irritation at this sentence, I do hope that the 47-year-old patient has lasting relief. And if she decides to pursue it has surgery with a skilled excision surgeon and multi-disciplinary team.
There are plenty more studies out there, but this is all I have digested at the moment. I do plan to add more as I have the time to read them.
As usual, know your own body. Track your symptoms. Feel free and empowered to talk to your physician. Request tests and imaging studies. Find competent care. Pursue whatever avenue of treatment you feel is best for you.
Know that diaphragmatic Endometriosis is considered extremely rare. But, coming from someone who has had it, and after reading the studies above, know that it IS possible.
Advocate for yourself. And get the care you know you deserve.
Do you have diaphragmatic Endometriosis? What are your symptoms? What’s helped (or not helped) you along your Journey? Share with us in the comments below!
Fertility & Sterility (Feb. 2002; abstract) – Diaphragmatic Endometriosis: diagnosis, surgical management, and long-term results of treatment
Interactive CardioVascular and Thoracic Surgery (Oct. 2010; study) – Endometriosis-Related Spontaneous Diaphragmatic Rupture
International Journal of Fertility & Sterility (June 2018; study) – Endometriosis of Diaphragm: A Case Report
Journal of Minimally Invasive Gynecology (Sept. 2009; abstract) – Endometriosis of the Diaphragm: Four Cases Treated with a Combination of Laparoscopy and Thoracoscopy
Journal of Obstetrics & Gynaecology (1995; Study) – Successful Medical Treatment of Sub-Diaphragmatic Endometriosis
Korean Journal of Obstetrics & Gynecology Science (July 2012; abstract) – A Case of Diaphragmatic Endometriosis Presenting with Catamenial Pneumothorax
La Revue de Medecine Interne (Dec. 1994; abstract) – Endometriosis of the Diaphragm. Diagnostic Aspects Apropos of a Case Without Pneumothorax
Obstetrics & Gynecology (Nov. 2004; abstract) – Symptomatic Diaphragmatic Endometriosis Ten Years After Total Abdominal Hysterectomy
Rheumatology (Dec. 2006; study) – Chronic Shoulder Pain and Diaphragmatic Endometriosis
Surgical Endoscopy (Sept. 2012; abstract) – Laparoscopic Surgical Treatment of Diaphragmatic Endometriosis: A Seven-Year Single-Institution Retrospective Review
The Japanese Journal of Thoracic Surgery (Oct. 1999; abstract) – Catamenial Pneumothorax with Diaphragmatic Endometriosis: A Case Report
The New India Journal of OBGYN (July 2020; study) – A Rare Case of Thoracic Diaphragmatic Endometriosis Invading the Liver and Lower Lobe of Lung
~ 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 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa