Hi all,
I've had a flare up of what seems to be endo symptoms recently. My consultant thinks my endo has spread to my diaphragm so i'd be interested to know if the location of my pain seems like endo of the diaphragm. Excuse the shoddy drawing, i was trying to do it on my tiny phone screen. It would be good to know if this is typical areas for pain with this type of endo.
X
I am putting an extract below from a file I have written which was drawn from papers written by endo experts treating diaphragmatic endo. I hope this might be useful. x
Symptoms and diagnosis of diaphragmatic endo
The diaphragm is the most important muscle for respiration and comprises a long, thin convex organ (like an upturned bowl) located below the heart and lungs, attached to the lower ribs, sternum and lumbar spine to form the base of the thoracic cavity and top of the peritoneal cavity. It can range from 6 to 12 inches in length and is between a quarter and an eighth of an inch thick. So it is very thin. It is formed of two lobes, the left and right, which are clearly demarcated while still adjoining. The two sides are often referred to as the right and left hemi-diaphragms. The main nerves that serve the diaphragm are the phrenic nerves, but there are also peripheral nerves called the intercostal and the subcostal nerves. It is the phrenic nerves that are irritated by the CO₂ during a lap and this causes the referred pain to the shoulders.
Diaphragmatic endo will usually be suspected based on symptoms in the presence of already confirmed pelvic endo or symptoms of suspected pelvic endo that may well have been neglected for years. Diaphragmatic endo affects the right hemi-diaphragm in an estimated 95% of cases so the symptoms described will refer to those cases. In rarer cases of left or bilateral disease the symptoms are virtually identical in the corresponding locations. The classic symptoms are right sided chest and shoulder pain prior to or during a menstrual period. The pain can appear to be deep in the chest, radiating to the shoulder and sometimes up the right side of the neck or into the right arm. It can feel like a muscle strain. There can be shortness of breath and breathing can aggravate the pain and lead to reduced activity due to increased pain with deep breathing and exercise. Sometimes there is upper abdominal and upper GI pain. As disease progresses the pain can remain all month, worsening at period time. Redwine reports hiccuping as a rare symptom. The onset of symptoms will usually be gradual and may not be noticed at first or put down to unrelated causes. Not all women experience symptoms; superficial lesions may not cause any symptoms. Due to the thinness of the diaphragm when symptoms are present the full thickness will usually be involved. Since this presentation of endo is rare many gynaecologists may not know even the classic symptoms.
Due to the initial cyclical nature of symptoms, some gynaecologists may prescribe GnRH agonists (such as Prostap) in the belief that if the pain does not go away then it cannot be endo. But this is a flawed test as published evidence has shown that such medications are rarely effective and just like pelvic endometriosis, even if symptoms are relieved, they will quickly return once treatment ceases. Scans don’t show diaphragmatic endo well due to the small size of lesions on account of the diaphragm’s thinness. Most scans will be negative. In cases of diaphragmatic endo there is almost always accompanying severe pelvic and/or intestinal disease. Typically symptoms of pelvic and/or intestinal endo will be long standing and chronic before those of diaphragmatic disease develop. Some gynaecologists may erroneously put down symptoms of diaphragmatic endo to the effect of severe pelvic disease irritating the entire pelvic cavity, including the diaphragmatic peritoneum, since it is possible for an inflammatory process within the pelvis to cause diaphragmatic symptoms without disease being present there. Any woman known to have or displaying symptoms of severe pelvic and/or intestinal endo who develops the symptoms described above should immediately raise suspicion for diaphragmatic endo until ruled out.
Differential diagnoses – the rare but more serious and potentially life threatening conditions of catamenial pneumothorax (cyclical collapsed lung), hemopneumothorax (to include blood in the pleural cavity), chest wall lesions, and lung parenchyma involvement can also cause similar symptoms and sometimes occur concomitantly with diaphragmatic endo although they are thought to have different origins. Although rare still (with Nezhat noting less than 20 cases reported in literature as at 2012) liver endometriosis should also be part of differential diagnoses, since it too can cause cyclical abdominal pain.
As previously mentioned, a lap should always involve inspection of the diaphragm, but this brings with it potential limitations especially when carried out in gynaecology departments. If an umbilical port is used with the patient in the normal horizontal position on the operating table the liver will block the view of most of the diaphragm, including the right side, because it occupies the right upper quadrant. The anterior (front) diaphragm can be seen easily but disease there, if present at all, is usually superficial and may be asymptomatic. This may lead an inexperienced surgeon to think that this represents all of the patient’s diaphragmatic endometriosis and that it is causing the symptoms. It follows that treating such disease will not treat symptoms of deeper endo in more classic locations that are hidden from view by the liver, most usually at the far rear right side. In order to inspect the whole of the diaphragm a second further port can be placed under the right ribs and passed over the liver to view the posterior chest wall where the liver joins the diaphragm.
Diaphragmatic endo may be an incidental finding during surgery and if the patient truly doesn’t have symptoms then the recommendation would be not to operate since her life would not be improved through aggressive surgery that carries risks. A biopsy can be done in such cases to confirm the diagnosis but if symptoms develop in the future surgical treatment can then be considered.
My consultant thinks my endo is on my diaphragm now as wellI also have pain were you have and it can travel up my shoulder neck and behind my ear all right sided pain.
Get very breathless as well even when I'm not doing anything
Mine doesnt get up as far as my neck but its pretty much constant around my shoulder area and it flares up under my rib on and off. Sometimes i go through times when the rib pain is fine and its just my shoulder the n it flares up again. It seemed to be the week before my period but now i'm constantly taking the pill and have no periods it seems so random. Is yours cyclical or does it crop up other times?
Hi, I have confirmed diaphragmatic endometriosis which covers my left and right hemi diaphragms. Right more than the left. The pain I have had for years is basically the same as gas pain you get after laparoscopy...I was misdiagnosed for years but found out this month after my lap. Also have constant stitch pain under right ribs and pain when breathing during periods. The rest of the month my shoulder is still painful and agitated by it. I’m also diagnosed 3/4 rectovaginal but am waiting for 6 week app to find out more.. Hope this helps you! X
endo in mid 40s and questions…
Endo of the diaphragm 
Always hope for those with Endo and want a baby
Endo question 
