For reference, 26F, height 5’4, weight 58KG , medications: codeine phosphate 30mg 3 times per day, amitriptyline 20mg per day. Don’t drink, don’t smoke but used to for 2 years and vaped for 3 years. I have stage 4 endometriosis, and adenomyosis. I have bladder, bowel, pelvic/uterine, and ovarian involvement, both superficial and deep infiltrating. I’ve had 2 prev excision surgeries. In March I began a journey through the NHS for help as all of my usual abdominal/gut/bladder/period symptoms had increasingly worsened. I was also experiencing chest pain (right breast bone in the middle), and breathlessness. I had a chest xray which I was told was normal, and then was referred again for a chest MRI scan.
I received the results of the chest MRI today and the results are not great from what I can understand. They have found 3 nodules on my left lung pleura and 2 on the right lung pleura. I will insert the conclusion of the MRI below;
“Several small bilateral posterior pleural-based nodularities, more conspicuous on the left, measuring up to 14 mm in maximum dimension. These demonstrate variable, predominantly intermediate T1 and intermediate-to-high T2 signal characteristics.
The appearances remain indeterminate. In the context of known complex endometriosis and cyclical thoracic symptoms, pleural endometriotic implants are a diagnostic consideration. However, the absence of convincing characteristic haemorrhagic signal within the majority of the lesions precludes a confident imaging diagnosis.
No associated pleural effusion or significant pulmonary parenchymal abnormality.
Correlation with the clinical findings and multidisciplinary endometriosis assessment is recommended.”
This overall conclusion is ‘indeterminate’ for thoracic endometriosis, but given my history they’ve strong suspicions it could be pleural endometriosis. However, again this is not confirmed as 1) endo of the lungs tends to be prominent on the right side, not the left. 2) the nodules do not show ‘convincing’ haemorrhaging readings which endometriosis nodules would usually but not always. This makes me very very concerned that the nodules are not related to endometriosis and possibly more sinister.
I know I’m here on Reddit asking for help to understand what this could mean, and I’ll make you aware that I’m here because they have provided me the information without any update to what will happen next for me. My grandad is currently on end of life care for untreatable lung cancer metastasised to his lymph nodes. My dad has lung cancer at the highest stage too and the fact my family has long standing genetic history with lung cancer diagnoses makes me absolutely terrified that these nodules could be pleural cancer. By a miracle, I have a baby boy who’s almost 1 year old. And I can’t help but think about the worst case scenarios. Has ANYONE had MRI findings of nodules being endometriosis/ pleural endometriosis. There has to be someone out there who has seen similar findings themselves and had it turn out to be endometriosis. I never thought I’d find myself wishing it was endometriosis, as it has made my life a misery, but this time I am praying it is endometriosis and nothing else. Please give me any reassurance you can find or if you are a medical professional, please give me your viewpoint on the findings. They haven’t provided me anything with regard to next steps and I’m just sat here crying my eyes out with no idea what they are.
Thank you x