Help with support and info

[Cat2019]

Hi new here and first time posting, recently been diagnosed with catamenial pneumothorax have suffered with very painful heavy periods for as long as I can remember just wanting advice as getting treatment for the lung side of the endo but as it's such a rare condition is there anyone out there who has the same type of endo ? Such a lonely and difficult condition to get through with no support groups or medical staff knowing anything about it .

[Moon_maiden]

Must be incredibly hard to deal with, endo is bad at the best of times. I can’t help from experience, I’m not sure where the spread may or not be at the moment.

Endometriosis UK has a telephone helpline and may have experience.

Can the consultant who diagnosed it not point you in a good direction, or maybe the British Lung Foundation.

I hope someone can help you, take care 🙂

[Dance_20]

Hi Cat2019, I have just joined this forum and found your post from a month ago. I hope it's not too late to respond. I have recently been diagnosed with catamenial pneumothorax thanks to thoracic/diaphragm endo. My diagnosis was very traumatic. I came to know I had severe endo last summer. I was 36 at the time and wanted a family so my endo surgeon referred me for IVF treatment. Following one cycle of IVF I managed to conceive but my lung collapsed. I had a chest drain procedure in March amidst COVID and then lost my baby. My lung collapsed again when I had my first period following miscarriage. I have just come out of a terribly painful thoracic surgery which confirmed the suspected diagnosis of catamenial pnuemothorax. I am on a temp menopause (having norethisterone tablets 5mg x 6 tablets a day). I am so glad I found your post since I have been so depressed and lonely thinking why me to have such a rare condition. Have you had any luck finding a good thoracic surgeon/endo specialist? Please let me know if I could help in any way and I would love to hear your story too and how you are getting on currently.

[Ecorc in reply to Dance_20]

Hey, sorry I’ve seen this so late as I’ve been experiencing the same for the past 7 months. 4 collapses since then and now looking to get surgery. The surgeon wants to do a pleurectomy and put a mesh on my diaphragm. It’s so debilitating!! I’m so sorry to read what you went through. Have you had treatment for it now? I hope things are looking up for you.

[Anotherdayinsunshine]

I know this post is pretty old, I’m wondering if I have this. Stage 4 endo, last Saturday woke with a really sore shoulder. Have a stabbing pain when I breathe deeply, cough, sneeze yawn. Had blood tests, X-rays and CT. CT shows a nodule, and slightly collapsed lung. Back to the doctors this morning. As now they know it’s not my heart, they are thinking the pain is muscular skeletal. Can you share your symptoms?