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Endometriosis. Painful chest and pelvic pain. Had a hysterectomy. Have thoracic endometriosos?

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Hi. I am a 34 year old Norwegian woman who has suffered from endometriosis for about 20 years. I was diagnosed as late as 2010. By then it had caused me a great lot of pain which kept me from work and made social aspects of my life difficult. Summer 2010 I started noticing pain in my chest. It increased on the same time as my pelvic pain increased. I allso noticed tiny amounts of blood in my sputum and had episodes with problems breathing. When I started treatment for my pelvic pain with GNRH agonists the chest pain dissapeared. After few months I started using addback whivh caused great bleeding and again pain in my chest. Because GNRH tratmentleft me with severe migreene I desperatly had a hysterectomy. Few months after this (using no hormones) all symtoms reoccurred. On fall 2011 my symtoms were severe and during a flight from China I experienced great problems breathing. Days after I had a strange sound in my chest and I started coughing. I have now had severe cough for 4 months and no doctors here in Norway can help me. All ct scans, pet ct, and Mr images, respiratory tests and 4 broncoscopies, all with no unusual findings: except thickening of the right bronchial wall and a small collapse of the right airway. Doctors here can not do anything and I am left to my self.. Do you believe I can have thoracic endometriosis? How can I find out? Where can I find someone who can help me? Thank you so much for your anwer.
Posted Mon, 30 Apr 2012 in Lung and Chest disorders
Answered by Dr. Gyanshankar Mishra 2 hours later

Thanks for posting your query.

After going through your query, I would like to comment the following:

1. Considering your history, and association of your symptoms with cyclic duration of your menses previously, there is a possibility of thoracic endometriosis. Also the symptoms response to gnrh agonists further adds to this diagnostic possibility.

2. However remember that thoracic endometriosis is a very rare diagnosis.

3. Remember that "Medical treatment often serves merely as a diagnostic tool. A positive response to medical treatment in women with suspected Thoracic endometriosis may be considered diagnostic." In your case you seem to be having this medical response.

4. Since all your investigations are almost normal , any major respiratory disease has been virtually ruled out.

5. The right bronchial wall thickening may provide us a clue. Please consult your pulmonologist and ask him to take a protected specimen brushing (PSB) via bronchoscopy from the bronchial wall thickening. Presence of endometrial cells on the PSB will help clinch the diagnosis. Remember that this procedure should be done when you are symptomatic because if done during the asymptomatic period , it may not yield the result. The collapse of the right airway needs to be evaluated.

6. An endobronchial ultrasound if available may be of diagnostic value in your case.

7. If despite all efforts, the diagnosis is not confirmed then I suggest that you should start empirical treatment of thoracic endometriosis in consultation with youir physician and gynaecologist/endocrinologist.

8. You need to know that thoracic endometriosis can only be confirmed on histopathology and histopathology can only be done if there is a visible lesion.

Thus you need to visit a pulmonologist and get yourself evaluated accordingly. An academic medical institute/ pulmonary tertiary care center will be an ideal place for you to approach if possible.

I hope I have answered your query. I will be glad to answer any follow up queries.

Please accept my answer if you have no follow up queries.


Dr. Gyanshankar Mishra
Above answer was peer-reviewed by
Follow-up: Endometriosis. Painful chest and pelvic pain. Had a hysterectomy. Have thoracic endometriosos? 3 days later
Thank you for your answer.
I have been to two hospitals here in Norway. No one seems to believe that this is thoracic endometriosis and they do not have any experience with this condition. Only 4 million people live in this country. Therefore it is kind of hard to convince them that the CT scans and the bronchoscopy with PSB must be done when I am symptomatic. Even when my pulmonologist consulted Norway`s most recognized endometriosis surgeon he was told that without findings on CT or pet CT scan there is no possibility of thoracic endometriosis. Unfortunately they continue to focus only on the cough which I experience appeared after having problems breathing during flight.

As for the hormonal treatment that you suggest I am afraid that the side effects will be as bad as last time. I had continuously heavy migraine when using Procren depot. Any use of add-back caused bleding, pelvic, sciatic and thoracic pain.

I have a few more questions for you:
Could my experience with problems breathing and increasing chest pain during flight indicate hypoxemia due to lung disease, even though all breathing tests and measuring of oxygen in my blood are normal?

In some cases I know thoracic endometriosis can cause pneumothorax. Could there be that in my case it caused a collapse a little further up in the airways instead?

Do you know of any specific hospital or clinic which has experience with thoracic endometriosis in Europe or in the USA?

One thing I also want to mention for you, even though this concerns nerves and not the chest. The wright side of my face becomes numb, and my eyebrow and eyelid drops at the same time as all my other symptoms occur... My face becomes asymmetric about 2 weeks every month. They found a 1 cm hemangioma by the 7th cranial nerve on MRI scan. When I had the same scan in 2008 the hemangioma was the same size but on the 6th cranial nerve. I did not experience the same face symptoms in 2008 but I had a great deal of pain in my arm and shoulder. Doctors say that the hemangioma is of no concern. What is your opinion?

My condition is very confusing but I hope you will be able to answer me. Thanks again.

Answered by Dr. Gyanshankar Mishra 59 minutes later

Thanks for the follow up.
After going through your follow up query, I would like to comment the following:

1. As I have already said, you need to get yourself investigated at exactly the time of your symptoms.

2. Cyclical chest symptoms need to be explained if , endometriosis is being ruled out for lack of objective evidence.

3. You need to take a pre flight fitness assessment for prevention of inflight symptoms. Your inflight breathlessness - hypoxemia could have been caused by partial airway collapse on the right side. Pneumothorax during flight will be detected in the chest xray taken after the flight. In pneumothorax you have sudden onset bronchoscopy from the walls of the partially thickened airways during symptomatic period may help in diagnosis.

5. Thus if your symptoms are cyclical in the same way as your previous menses, then there is a likelihood of thoracic endometriosis. If the symptoms are not cyclical and had developed only after flight, then less chances of endometriosis.

6. Hemangiomas are benign lesions and the symptoms you have described are classically due to the pressure effect of the hemangioma on 7th nerve. If the pressure symptoms are increasing with time then such lesions may need surgical removal, however this is a very rare occurrence with hemangiomas which normally do not cause much trouble.

7. Mayo clinic is an internationally reputed medical care center. It has a very qualified pulmonary department. It has centers at Arizona , Florida & Minnesota. You may contact them. Details of pulmonary and critical care department are available on their website.

I hope I have answered your query. I will be glad to answer any follow up queries.

Please accept my answer if you have no follow up queries.


Dr. Gyanshankar Mishra
Above answer was peer-reviewed by
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