Diaphragmatic endo is an entity little known to most physicians. Many GYNs don't even know it exists, and most pulmonologists (lung specialists) aren't very familiar with endo. It is an incredibly rare manifestation of endo, with only 30 cases reported in the literature, most occuring on the right side. I actually think it's a little more common that this, as I've seen 2 cases since I've been here in Bend (9 months). Patients typically have pain in the right chest and shoulder around the time of their menses, and sometimes can cause pain with taking a deep breath. Rarely, it can cause what's know as a catamenial pneumothorax (a dropped lung around the menstrual flow). This can cause an increase in pain as well as difficulty breathing and air hunger, feeling like you can't breathe deeply enough. Because it's rare to have this dropped lung condition, as usual, endo of the diaphragm won't typically show up on any imaging studies, so once again, we're back to requiring a high index of suspicion to diagnose this entity. Laparoscopy with the scope through the belly button will allow visualization of the anterior part of the diaphragm, which can give you an indication of whether or not there's endo present, but by far most lesions hide out towards the back of the diaphragm behind the liver, which can't be seen with the usual scope position. We use a smaller 5mm scope through a port in the right upper quadrant (just below the ribs) in order to see the entire diaphragmatic surface in patients that complain of these symptoms. When diaphragmatic endo is present, because it's usually full thickness through the entire diaphragm, we have to remove it through an open incision beneath the ribs (like an open gallbladder incision.) This is because the liver can't really be retracted laparoscopically without risking tearing it, which will cause lots of bleeding (typically considered poor form in surgery...). That's also the reason that just lasering the lesions usually doesn't work (because they extend from the abdominal surface to the pleural (lung) surface).
The amazing thing about diaphragmatic endo is that just like bowel endo, the pain magically disappears even before the incisions are healed. It's truly amazing to see.
Well, that's about all there is to say about diaphragmatic endo. Short and sweet, but oh so necessary for those who have it.
Have a great week and Memorial day weekend, and say a prayer for the families of all the troops who have given their lives to defend our freedom. Take care,
Dr. Mos
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6 comments:
Hello Dr. Mosbrucker,
I am the author of Living With Lung and Colon Endometriosis: Catamenial Pneumothorax. My diagnosis and all surgeries occured while serving in the military. Thank you for your great skills and knowledge in this area. Lung endometriosis is not rare, but under recognised and under diagnosed.(www.catamenialpneumothorax.org)
Glynis D. Wallace DMD
Dr. Mos - thanks for your insight with this. Whether I have diaphragmatic endo or not has yet to be officially diagnosed, although I have many of the symptoms of it and it is suspected. My point with this though is that you made the comment about "air hunger". I am very familiar with this symptom and believe it or not, it is comforting to know there is a label for that particular symptom, I didn't know there was a name for it as it is something I experience. Anyway, thanks for the continued enlightenment, it is very much appreciated.
Thanks again,
Nicola
Dr. Wallace,
Thanks so much for writing. Your website is great - informative and funny at the same time. Thank you also for your service to our country - I trained in the Navy and fully enjoyed my time in service. Pulmonary and diaphragmatic endo may well be underdiagnosed, and I applaud your quest (as is mine) to educate both the public and medical professionals alike about the varying presentation of endometriosis. It has been our experience here in Bend that diapragmatic endometriosis responds well to surgical treatment with a near 100% cure rate. We haven't had many cases of true pulmonary endo, so I can't give you statistics about our experience with that specific site. If I can do anything for you, please don't hesitate to call.
Nicola,
Do yourself a favor and see a specialist in endometriosis surgery. Feeling like you can't get enough air to breathe is one of the most petrifying experiences a person can have, and it's important to know what's causing that symptom (some causes are life threatening if it's not endo). Take care of yourself, and if I can help, please let me know.
Dr. Mos
Hi, I have not see a discussion of the different causes of back pain with women who have endo and what role endo might play in that.
Back pain comes up frequently on the discussion boards.
Thanks
Nancy P
Dr. Mos,
A couple of questions for you that I have...
Does Endo thrive off of estrogen? If so, why are we prescribed Birth Control? Are there any options besides birth control for pain?
Is there a correlation with weight gain and Endo? Would it be because of our abdomen's being inflamed from pain, or water weight gain around the time of ovulation?
Thanks,
Jessie
not sure if this was discussed - exhaustion, even after surgery. it's been a year since excision surgery, and granted there have a couple extra surgeries including wrist.
is it anesthesia, or is it the body recovering from invasion?
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