Have anyone been diagnosed with catamenial pneumothorax?

Posted , 5 users are following.

I've had three pneumothoraces and the last two was a few days before my menstruation. I feel like the doctors are not listening to me in regards to making a diagnosis. I feel angry and fustrated because my last pneumothorax was after my vats operation. I have numbness, burning, pulling sensation on my chest, back and weakness on my right hand. I have been able to return back to work and Im getting depressed now.

0 likes, 7 replies

7 Replies

  • Posted

    Yes I have! I have just had a bullectomy and pleurodesis and while they were there they checked my diaphragm and found holes there for the endometriosis to travel through.

    I’m seeing my dr Tuesday to plan treatment!

    • Posted

      Nothing was found on my diaphragm but I have all the symptoms of endometriosis and the pain on my chest gets worst during my periods. I'm going to have a transvaginal scan and the a laparoscopy and treatment plus hysteroscopy. I'm really tired now.

  • Posted

    Hello , yes I had. It took them 3 hospitalizations one VATS and a recurrent one all pneumothorax  that nearly killed i e plus one thoracothomy to  ask for an IRM of my pelvis which showed that I could have endometriosis that was unfortunately asympyomatic. 40 days after my thoracotomy I had to have a laparoscopy ( the only way to really diagnose endometriosis ) . They found out that I had a severe stage that extended to the diaphragm. I had then an oopherebtomy plus I had after to restrict all food and supplements that contains phytoestrogens . 

    Be aware if you have endometriosis that is causing this you will never finish with pneumothorax unless you treat it either with. Medication or surgery . Listen to yourself and visit a gynecologist , ask for an IRM. And even do not worry about a laparoscopy if it will finish your misery 

  • Posted

    I suggest looking up a disease called Lymphangioleiomyomatosis (LAM)

    It causes collapsed lungs. If you think it could be the cause of the problem, visit www.thelamfoundation.org of more info and a list of docs who specialize in treating it.

  • Posted

    Thanks Marie, i'll do that.

  • Posted

    I've looked at the video and I can definitely say I don't have LAM disease. My thoracic consultant say my lung is healthy, there are no signs of any cysts or cancer. Thanked God

  • Posted

    Hi everyone!

    I've found this thread as the newest one on this website related to my problem.

    I am 29 y.o., woman. For the last 5 months I had 3 catamenial pneumothoraxes, although I have never experienced any endometriosis symptoms. I recently had one VATS surgery (pleural abrasion, no signs of endometriosis even with histochemistry, no fenestrations in the diaphragm, a couple of small bubbles found). But the surgery didn't help as pneumothorax appeared again with the next menstruation. Now I am waiting for Endotest (saliva test) result and also I am going to make the MRI of the pelvic organs.

    Doctors want (and don't want at the same time) to do one more surgery: pleurodesis with talc. And also I guess that my gynecologist will prescribe we hormone therapy, which I am really afraid of because of its awful side effects and because I had thrombosis + lung embolism in the past when I took combined oral contraception.

    Did hormone therapy really help anyone? How long have you been without recurrence?

    Has anyone tried to become pregnant being in such situation? (I want to believe I won't have any pneumothoraxes during the pregnancy and lactation period, so... maybe accidentally smth will change in my organism, it's just my hope). But I am afraid that I won't be able to become pregnant, if I really have endometriosis...

    Hope someone still reads this thread. Thanks.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.