Understanding Thoracic Endometriosis

When I was diagnosed with endometriosis and started doing my own research, it took me a really long time to learn about thoracic endometriosis. I don’t think I would have ever made the connection that my strange new symptoms were endometriosis-related if it weren’t for the few women I had met who had endometriosis on their diaphragm. I had no idea how difficult things could get when it isn’t treated properly, especially when your symptoms start to get out of control. Being diagnosed with pelvic endometriosis is challenging enough, but with thoracic endometriosis, it can be a completely new obstacle.

What is thoracic endometriosis?

Simply put, thoracic endometriosis is when endometriosis is found in the chest cavity- more commonly in the diaphragm, but it can be found in the lungs. Symptoms range from trouble breathing, chest pains, right shoulder pain, lung nodules, lung collapse, and coughing up blood during menstruation.

My symptoms

The first symptom I noticed was right shoulder pain, which I eventually learned is referred pain from the diaphragm itself. Within a year it progressed into trouble breathing and sharp chest pains that made it feel as if a knife was going through it. It made it hard to walk upstairs, talk on the phone, and even sing. I had never had problems like these. They felt so foreign and terrifying.

My last symptom was the most scary. A few months before I finally got treatment, they did a CT scan of my chest and they found 3 small lung nodules. My heart sank when I got the email from my doctor. At this point, endometriosis had already been removed from my diaphragm, but the fear of lung involvement was really hard to process.

Surgical treatments

One of the most frustrating parts of having thoracic endometriosis is figuring out how to get the proper treatment. When I had my first excision surgery, my surgeon found Endometriosis on the lower right side of my diaphragm. When my symptoms only got worse months post-surgery, I learned that through a pelvic laparoscopy, they can only see the bottom half of your diaphragm. My gut told me that something was going on, there had to be more endometriosis that they just couldn’t see. I was determined to figure out what the next step would be, but there just wasn’t enough information available to me. I was so worried that maybe it was all in my head, but then I’d have a chest flare and think to myself, no this just isn’t normal.

Thoracic surgery

Thankfully, I had a friend with endometriosis who had the same symptoms as me and she told me about the thoracic surgery she had that relieved all of her symptoms. She explained to me that she traveled to see an endometriosis specialist that did pelvic and thoracic surgeries by having a thoracic surgeon there to assist. She told me they make a small incision, almost exactly as they do in your abdomen, except they go in through a spot near the side of your rib cage area. Then they carefully look around every inch of your diaphragm and lungs and remove the endometriosis using excision.

My journey

Though there are a few endometriosis specialists that work with thoracic surgeons, I decided to choose The Center For Endometriosis Care. They told me beforehand that I’d have to have a chest tube for a day or so to drain any fluid from the chest and that I’d have to be monitored in the hospital for a few days to make sure my lungs were clear.

Thankfully, they only found endometriosis on my diaphragm. It was on the top half of where the first endometriosis lesion was removed, so it made sense as to why my first surgeon couldn’t see it. Once removing that, they searched every inch elsewhere and did a separate surgery for my pelvic endo. A day after surgery, they told me they could remove the chest tube, which was one of the strangest feeling of my life. Then after two more days of doing chest x-rays to make sure my lungs were clear, I finally got discharged!

How I feel now

Over a year post-surgery, I haven’t had any chest pains, I’m able to sing again, and most importantly, I can breathe again. It wasn’t until I had the surgery that I really realized how much damage a small piece of endo could cause. I am so grateful I was able to find doctors who believed my symptoms and were able to treat it successfully. I’m also endlessly grateful to the women with thoracic endometriosis that helped me through each step to relief.

Do you have signs or symptoms?

If you’re experiencing any of the symptoms that I had, talk to your OB/Gyn! If they don’t take you seriously, find an endometriosis specialist close to you. More and more endometriosis surgeons are starting to pair up with thoracic surgeons. Hopefully, this means that fewer women will go untreated, but we still have a long way to go with education about it. It’s important for us to always remember that our pain is real, even if it’s pain that seems “strange” or “rare”. We are our best advocates, as tiring as it can be, and we need to keep pushing to be treated with the best care possible.