Thoracic Endometriosis

[BlueTit98]

Hi lovelies,

I’ve got stage 4 endometriosis, spanning 16 years or so.

I had a CT scan on my thorax to see what’s going on in my diaphragm and lungs as I had endometriosis found on my diaphragm in 2019 and since having my little girl in 2020 now my pain is pretty much constant on one side of my chest (right) intermittent on the other side and painful with certain movement, lying on my front back or side and lots of other symptoms which are all around thoracic endometriosis.

I haven’t been told my CT results yet but have been called for an emergency MRI of my thorax. Feeling quite nervous.

Those of you with thoracic endometriosis, how were you diagnose? A lot of endometriosis clinics class diaphragmatic endometriosis as thoracic endometriosis alone but my current surgeon does not. His response was ‘oh no you don’t have that..that’s heavy’ I’m like yes I know it’s heavy I have many many symptoms and you already found it on my diaphragm 🤦🏻‍♀️I know it’s much worse than before as the symptoms are so much more frequent and intense. The pain is always there, like a pulling pain/raw like someone has grated me, sometimes stabbing and like lightning shooting down, shoulder pain strangely on the opposite side, a lot basically.

Has anyone been pregnant whilst having thoracic endometriosis too? I would like another baby if my body can do it but I’m really worried about the impact of it during pregnancy. I had some pain in the middle of my first pregnancy in my chest but it did subside, but I didn’t have chest symptoms anywhere near to what I have now before I had my little girl.

Because it’s so uncommon there’s very little about it online!

Thank you x

[Avourneen]

I think I have this. It isn't actually anywhere near as rare as doctors think. For women who have stage 4 endo it is quite common. The problem is that it is really hard to scan for. I asked two gynaes and they both said it won't show up on MRI unless it is really thick. It seems to be much harder to get to see on scans than endo in other places.

Only a handful of doctors in the UK can deal with it. I can give you the name of someone who does but he completely refused to help me, becuase I had already had surgery with a different specialist. He said that would make further surgery too hard.

I'm at a loss as to what to do. A good friend who had her ast op at the same time as me went to a doctor who is meant to be the UKs top endo surgeon paid 20,000 for a huge op and 6 months laters her scans are showing it has all grown back.

I think there are two or three specialist in the US who are meant to be good at dealing with this I can give you their details. But basically it seems like you need to have your thorax opened up and have an exploratory op there to check if that is what it is.

Let me know if you hear form anyone who has had this and who has had successful treatment.