2 years post op for catamenial pneumothoraces and on Yasmin, getting pains again. Anyone else?

[Cloud9ine]

2 years ago my daughter experienced numerous spontaneous pneumothoraxes(at least 7 in a 4 month period, then 5 more while in hospital during a 3 week stay) at the very beginning of puberty aged 14. At 15 after a right side pleurectomy the pneumothoraxes stopped though the pains continued until she was considered as someone with endometriosis and it hormonally affecting her lungs. Most people affected with this get pneumothoraxes within 72 hours of a period but more rarely it can happen at ovulation, my daughter unfortunately has both. She was prescribed Yasmin on a permanent basis. Like a switch! for 2 years the pains nearly totally stopped.

We thought we had it sussed and that it would be all manageable from now on, or so we thought.

For some reason now she is getting worse again and beginning to feel pains in her right side now as well and the pill seems to be not doing it’s job for her lung symptoms and she is experiencing breakthrough bleeding too. She has had breaks to see if restarting the pill after 2 weeks would help but it’s just all feeling so reminiscent of the first days and it’s heartbreaking to see her confused and hurting so much it’s affecting college and everyday life again.

This is just such a small portion of her story, I’ve left out so much detail and I make it sound so simple but really my wee girl has to experience the feeling of being stabbed in her back multiple times a day for days on end never knowing when it will stop or even if her lung has actually collapsed once again or if it has now started on her left side.

Does anyone else here still experience the pain after surgery and hormone treatment? Has anyone here had any pneumothoraxes after surgery, should I be worried this is happening again?

Most doctors here don’t even know what I’m talking about, GP never heard of it, her gynaecologist never did a follow up consultation once she thought the drugs were helping.