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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 on the diaphragm, but it can be found on 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 ON/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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • ayl291
    4 months ago

    Hi Guys,

    I am actually a Nurse and was working on my NP when one day I stopped being able to breathe lol. Its awful how the medical community completely disregards patients!

    I was hoping to ask any of you ladies, do you feel like you have issues physically pulling a breath in?

    And does anyone experience pressure, my right lung feels like there is a boot pushed into it half the day?

    Any info would be beyond helpful!

  • Keri Wiginton moderator
    4 months ago

    I have this problem. It feels like I can push out my diaphragm very far. I also have trouble running because I get a bad cramp in my side (a new problem as of the past couple years). When I asked my gyno about it, she just disregarded it and said there’s no point looking because she can’t take out all my organs. And if there was a really serious problem, I’d probably cough up blood. I have never had a gyno take the “endo happens outside of the pelvis” seriously. But I’m going to a gastro to see if there’s something they can check for. My advice would be to see someone who deals with those organs. – Keri (endometriosis.net team member)

  • BH0108
    4 months ago

    Thank you for this article. I have been experiencing very similar symptoms, and when I mentioned the possibility of thoracic endo to my pulmonologist, he laughed at me – not a fun day. Thank you for sharing your story. It is encouraging.

  • Keri Wiginton moderator
    4 months ago

    I sort of had this experience with my gyno yesterday. I’m having a problem near my gallbladder and diaphragm. It gets worse near my period. My doctor’s advice was to go on lupron or orlissa to “see if that makes it stop.” But I’d rather not undergo 6 months of terrible side effects just because she won’t do a CT scan. I’m going to a gastroenterologist next. Here’s hoping they don’t make me feel quite as stupid for caring about my health! – Keri (endometriosis.net team member)

  • Fela M’tima Dunfee moderator author
    4 months ago

    I am so sorry you’re struggling with it too and the article was somehow helpful. You’re not alone! Keep fighting and try and find an endo specialist that believes in thoracic endo. Your pain is real and you deserve proper treatment ❤️

  • Endo Warrior moderator
    4 months ago

    Hi @bh0108 I’m so sorry your doctor laughed at you, I can’t believe how unprofessional some health professionals are. Sadly, you’re not alone in that respect, I’ve had the same experience with one of my doctors, as have a number of women on this forum. I’m linking to some other stories below.

    https://endometriosis.net/clinical/doctor-laugh/
    https://endometriosis.net/living/need-new-doctor-1/
    https://endometriosis.net/living/need-new-doctor-2/

    You are entitled to find a new doctor, so I hope you’ll be able to find someone who will take your concerns seriously. You deserve to be heard and you pain should be taken seriously.

    Christina (team member)

  • BH0108
    4 months ago

    Thanks. It’s encouraging to know other women are experiencing some of the same things. Sad, but still encouraging. And, yes, I have found a new doctor who is compassionate and looking further into this possibility.

  • Jessie Madrigal moderator
    4 months ago

    @bh0108 thank for you commenting and sharing your experience with us. It’s so disappointing to hear of doctors that laugh at their patients, it just makes me so angry! I hope you can find a doctor that is more supportive and that you can get some effective relief. In the meantime, we are here for you – Jessie (team member)

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