Although often termed 'rare' in the literature, the CEC actually treats a very high number of thoracic and diaphragmatic endometriosis cases annually. Please let us know how we can help you. You may also wish to join this Thoracic Endometriosis Education & Support Group run by those who have experienced the condition.

Guest Feature by Dr Kongoasa. © 2012. Last updated 2018.

The term thoracic endometriosis has been used to describe the varying clinical and radiological manifestations associated with the growth of endometrial-like glands and stroma in the lungs or pleural surface. Catamenial pneumothorax (CP) is defined as pneumothorax (medical term for collapsed lung) happening around the menstrual period and is the most common manifestation of thoracic endometriosis, accounting for about 80% of cases. Rarely, thoracic endometriosis may present with catamenial hemoptysis (CH), which is expectoration of blood or blood-tinged sputum in association with menses.

In almost all cases, thoracic endometriosis is unilateral and right sided, although there are rare cases of left sided disease. Bilateral disease is rare. The presentation of CP includes cough, chest pain and shortness of breath. The chest pain may be similar to patients with spontaneous pneumothorax or present as shoulder, scapular or neck pain. Some management strategies for thoracic endometriosis follow:

For any individual with a spontaneous recurring pneumothorax, a gynecologic history and evaluation of her menstrual cycle should be done. When thoracic endometriosis is suspected, Video-Assisted Thoracoscopic Surgery (VATS; a minimally invasive thoracic surgery that does not use a formal thoracotomy incision) is the preferred approach whenever possible. The diaphragm needs to be explored thoroughly, including the visceral and parietal pleura, and if necessary, a port should be inserted at the subcostal margin to assess the posterior diaphragm. All accessible lesions and fenestrations should then be resected. Fulguration or ablation of lesions should not be used, as it is inadequate for treatment of endometriosis and will result in higher recurrence rates.

Following resection, plication (a procedure which allows the diaphragm to move and expand better, thereby improving ventilation) is recommended to seal and strengthen the diaphragm. Simple suturing of the fenestrations does not provide tissue diagnosis and is usually followed by recurrence. Lesions close to the phrenic nerve or its main divisions are best treated by limited resection (if possible) and repair. A mechanical pleurodesis is also further recommended after all accessible lesions have been excised.

Medical treatment has long been considered the first choice by some for their patients with thoracic endometriosis. The literature contains a variety of reports on the use of oral contraceptives, progestational drugs, danazol and gonadotropin-releasing hormone (GnRH) agonists. Experience in the last three decades has been greatest with danazol and GnRH agonists. However, the results of medical treatment for CP have been disappointing, as with all manifestations of endometriosis. At 6 and 12 months, surgical treatment of CP resulted in far lower recurrence rate than did hormonal therapy (5% and 25% compared with 50% and 60%). Therefore, before initiating pharmacologic disruption of ovarian steroid genesis in a young woman, all surgical treatment options should have been exhausted.

As a multidisciplinary Center, we propose joint surgery by our thoracic surgeon colleague and one of our gynecologic surgeons specialized in endometriosis. The CEC will always collaborate when thoracic endometriosis is suspected. Not only will this allow for an assessment of the diaphragm from both the pleural and peritoneal side concurrently, this will also allow more thorough identification of endometriosis lesions and fenestrations by both specialists in one operative event. Additionally, there is a significant association between the presence of pelvic endometriosis and thoracic endometriosis, and a joint surgery will further allow the treatment of any pelvic endometriosis at the same time. The thoracic surgeon may want to do some imaging studies first prior to the surgery to see which side of the chest the disease is located.  Depending on the extent of the surgery, individuals may need to stay in the hospital between 1 and 5 days.

Further reading:

Glynis D. Wallace, DMD has written a book on her experiences with lung and colon endometriosis. Visit her site here.

Thoracic Endometriosis by Philippa Bridge-Cook, PhD

Thoracic Endometriosis Case Report

Thoracic Endometriosis

Catamenial Pneumothorax: Literature Review

Refractory Thoracic Endometriosis Syndrome

Thoracic Endometriosis: Association with Pelvic Endometriosis & Fertility Status

Material(s) presented herein are for informational purposes only. Such material is not intended to offer or replace medical advice offered by your personal physicians or healthcare professionals. No portion of this correspondence should be considered as party to any CEC doctor/patient relationship. All contents herein are © copyright by the Center for Endometriosis Care except where otherwise explicitly noted. All rights reserved.