Understanding the respiratory system
The respiratory (breathing) system is made up of the nose and mouth, the windpipe (trachea), two tubes that branch from the windpipe into each lung (bronchi), and the lungs. Each lung is surrounded by a layer of cells supported by connective tissue called the pleurae. This has two layers, the visceral pleura (the layer which covers the lungs, and the parietal pleura (the outer layer which lines the ribcage and the diaphragm). The diaphragm is a sheet of muscle that separates the chest from the upper abdomen.
The lungs are a pair of spongy, air-filled organs located either side in the chest (known as the thorax). We have two lungs (left and right). The purpose of the lungs is to oxygenate blood by bringing in the air we breathe (inhale) and transferring it into the bloodstream so that it can get to every part of the body. These organs also help get rid of gas (waste) by removing carbon dioxide from our bodies each time we breathe out (exhale).
What is thoracic Endometriosis?
Thoracic (lung and chest) Endometriosis occurs when Endometriosis is found either on the surface (known as superficial Endometriosis) or infiltrated deep inside the chest cavity – more commonly on the diaphragm, but it can also be found on the lungs.
Symptoms may include right shoulder tip pain, a combination of breathing difficulties, pain in the chest and upper abdomen, benign growths, lung collapses and coughing up blood, particularly around the time of menstruation.
How is thoracic Endometriosis diagnosed?
Diagnosing thoracic Endometriosis can be challenging because the symptoms can sometimes be non-specific (meaning the symptoms are generalised and difficult to pinpoint). However, a good starting point is to carry out a careful review of your symptoms.
The diagnosis often requires intimate examinations, assessments, and referrals. Some people may experience symptoms in the lead up to their periods which can be a good indicator for thoracic Endometriosis, being that the symptoms most commonly appear around the time of menstruation.
The diagnosis itself can sometimes be challenging as currently, without a non-invasive diagnostic test, the only way to definitively diagnose the condition and its stage of progress, is by undergoing laparoscopic surgery. This is an invasive procedure.
Which tests will I find most helpful?
more about these tests and what to expect.
What treatments are available?
Treatment for thoracic Endometriosis is similar to that of pelvic Endometriosis. It can be helped with a combination of pain relief and anti-inflammatory medications, pelvic floor physiotherapy, and alternative therapies such as acupuncture.
Hormone therapy treatments to limit, help regulate or temporarily stop your periods may also benefit. However, for more severe cases, treatment of the Endometriosis may require surgical intervention, if other treatments are not effective.
When is the right time to consider having surgery?
Your doctor may recommend surgery for several reasons, these may be:
When your symptoms are severe and medical treatments have not worked
When you may be experiencing difficulties breathing
When there is visible distortion of the chest cavity (collapsed lung)
What to expect during surgery
When Endometriosis is found affecting the chest, the affected area will often need to be ‘shaved’, ‘burnt’ or in some instances (depending on severity) part of the lung or respiratory organ may need to be removed. As with all other surgeries for Endometriosis, this type of operation should ideally be carried out laparoscopically (via key-hole surgery).
Thoracic Endometriosis surgery is often performed in conjunction with a video-assisted thoracoscopic surgery (VATS) where the Endometriosis is surgically removed.
Your surgeon may place a thoracoscope (a thin tube-like instrument with a light and a camera located at the tip) into your chest through a small incision usually between the ribs or the upper abdomen. This allows surgeons to look inside your chest and examine the surrounding areas.
Small (sometimes) tiny incisions are then made around the chest area where your surgeon will insert surgical instruments which they’ll use to remove the Endometriosis and any fluid or air found in the chest.
Once the surgery is complete, the instruments are removed, and the incisions are closed, usually with stitches.
It's important to know...
Depending on the severity of your Endometriosis and whether or not you may have a build-up of fluid or air, a chest tube may be inserted for a short duration of time.
Your doctor should discuss the available treatments with you taking into consideration the severity of your symptoms, your age, medical history, whether or not you’re looking to start a family, and various other individual circumstances along with any possible side effects, risks, and complications.
The importance of seeking specialist help
Because of the complexities of Endometriosis, surgical treatment is preferably carried out by accredited Endometriosis specialists in a multidisciplinary setting – meaning a thoracic surgeon working with a gynaecologist where required.
This is because not all gynaecologists are familiar with Endometriosis. Furthermore, not all surgeons are experienced in diagnosing and treating the condition.
Finding expert help early on can help prevent delayed or misdiagnosis, poor treatment, and inadequate care.
Meet Maggie: Having painful periods has always been an accepted norm, and you just have to find ways to cope. Then one day you’re told your lung has collapsed. I used to curl up and crawl on the floor in pain. I was put on a pill to help with this. The first period of being on the pill was the worst. I booked an emergency appointment with the GP the following morning. The GP tried to examine my stomach, but I couldn’t lie down because I was in agony. They concluded I was having a miscarriage, but that was wrong as I was on my period. I was given an urgent note to show at A&E. I was examined and admitted for being tachycardiac. There was a lot of confusion at the ward as the nurses wanted me to confirm a miscarriage. I had a chest Xray and there it was — pneumothorax. We went through all the usual causes i.e. smoking, genetics, lung disease etc but none fit. In passing catamenial pneumothorax (a condition of air leaking into the pleural space (pneumothorax) occurring in conjunction with menstrual periods) was mentioned. Air was removed from around my lungs, and we moved on to stomach pains. All focus back to the stomach pains. I was discharged and referred to an imaging department for a trans vaginal ultrasound. I was told it was likely PCOS causing the agonising pains. In 2013, 5 years from the first signs of thoracic endometriosis; at a regular GP check-up the nurse noticed my shortness of breath and prescribed an asthma pump. For obvious reasons this didn’t relieve my symptoms. I continued to suffer from shortness of breath, ribs and right shoulder pain, and carried an enormous, bloated belly. I could hear water sloshing around in my belly at times. Remembering the mention of PCOS I visited the GP to get a follow up ultrasound of the abdomen. During imaging, I noted a concerned look on the sonographer’s face. She had moved the ultrasound probe (transducer) more to my chest and asked lots of questions. After the scan she asked me to see my GP immediately. The next day the GP referred me for a chest X ray. After the scan the radiographer asked me to wait around. Anxiety anyone!!! The radiographer returned and asked me to follow her to A&E. The X rays showed fluid in the chest and a collapsed right lung. I was admitted and more than 2 litres of fluid was drained from the chest. Unfortunately, the lung didn’t re expand after draining the fluid. I spent 5 days in hospital carrying out tests and waiting for the lung to re-expand. On a morning ward walk a consultant mentioned endometriosis. I was sent for a chest, pelvis and abdomen MRI scan; it concluded the appearance are suggestive of endometriosis. Later that evening, I was transferred to a different specialist hospital. The plan was to have a video-assisted thoracoscopic surgery (VATS) to clean the diaphragm and allow my lung to expand. As planned, I went to theatre; to wake up from a 4 hour long open thoracotomy surgery. The consultant explained that there was a lot of damage and decortication was also performed. The thoracic surgeon had done his bit and was brilliant at checking in. In the background there was a bit of a fuss regarding my case. It seems the gynaecology department didn’t want to take my case on. Personal opinion; they didn’t believe the cause of my symptoms to be endometriosis. The thoracic department insisted I get seen by the gynaecology department to prevent the issues with the lung to rear its ugly head again. For this reason, I was prescribed a Zoladex injection to stop my period and to allow the gynaecology department to come on board. Thanks to the thoracic department efforts I was discharged after 2 weeks with a referral to a gynaecologist. I was again lucky to end up with an appointment with a consultant gynaecologist with an interest in endometriosis. In 2014 she performed a laparoscopic surgery. Following on from both surgeries my stomach pains are bearable but the dull ache in the right shoulder rears its ugly head now and them at the onset of the period. I will get this checked when hospitals are under less strain. I note since I’ve taken to jogging the right shoulder ache is very minimal.
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