When Endometriosis Affects Your Lungs, What Can Help?

If your “period symptoms” include coughing up blood

Most people think of endometriosis as pelvic pain, heavy bleeding, bowel symptoms, and fatigue. But in a small number of patients, endometriosis shows up above the diaphragm—most notably in the chest. This is called thoracic endometriosis syndrome (TES).

If you’ve ever noticed chest pain, shortness of breath, shoulder pain, or—most alarming—coughing up blood (hemoptysis) that seems to track your menstrual cycle, you deserve to be taken seriously. TES is rare, but it’s real, and delayed diagnosis is common because many clinicians simply don’t expect endometriosis to involve the lungs.

Recent clinical evidence (including long-term follow-up case data) suggests a practical, non-surgical path that may help some people: short-term ovarian suppression with a GnRH agonist (“GnRH-a”), then longer-term maintenance with dienogest.

What is thoracic endometriosis syndrome (TES) in plain language?

TES is an umbrella term for endometriosis-related problems in the chest. Symptoms often flare with hormonal cycling, especially around menstruation. TES can show up as:

• Catamenial hemoptysis (coughing up blood around your period)
• Catamenial pneumothorax (collapsed lung around your period)
• Chest/shoulder pain that predictably worsens with your cycle
• Shortness of breath or recurrent “mystery” chest symptoms that come and go monthly

You don’t need to have severe pelvic symptoms to have TES—but many people with TES do have a history of pelvic endometriosis.

The treatment approach: “shut it down, then maintain”

For TES, treatment often aims to stop hormonal stimulation of endometriosis implants so bleeding/inflammation in the chest calms down.

A strategy that may be considered (especially if surgery isn’t possible, isn’t desired, or hasn’t fully solved symptoms) is:

1. GnRH-a for a limited course (in the case data: 6 courses)
2. Dienogest for long-term maintenance

What these medications are (and why they’re paired)

GnRH-a (gonadotropin-releasing hormone agonist) creates a temporary, medication-induced low-estrogen state. In real life, many patients experience this as a “chemical menopause.” The goal is to rapidly reduce endometriosis activity.

Dienogest is a progestin often used for endometriosis. It can be used longer term for symptom control and is sometimes better tolerated than staying on GnRH-a.

Why combine them? Think of it as: get symptoms under control quickly (GnRH-a), then keep things stable with a longer-term option (dienogest).

How well might it work for lung-related symptoms?

If your main TES symptom is coughing up blood with your cycle, the case data behind this post is encouraging: after GnRH-a treatment followed by dienogest maintenance, hemoptysis resolved, and CT lung lesions shrank significantly, with no recurrence reported over years of follow-up.

That said, this is very important: this evidence comes from only two patients. It’s a signal of what can happen—not a guarantee of what will happen for you.

Still, if you’re sitting with frightening, cyclical respiratory symptoms and limited options, it’s meaningful to know that:

• Symptom control can be possible without chest surgery in some cases
• Long-term maintenance therapy may keep symptoms from returning

How long until you know if it’s working?

In practice, symptom-based TES often gives you an early clue: if your symptoms reliably flare with your cycle, then effective hormonal suppression often reduces or stops those cyclic flares.

A realistic way to track response is to monitor:

• Whether hemoptysis/chest symptoms occur at the next expected menstrual window
• Whether symptoms reduce in severity month-to-month
• Whether imaging (like CT findings your team is following) improves over time

Imaging changes can lag behind symptom improvement, and not everyone needs repeated CTs. But if you had visible lesions before, your clinicians may use imaging to confirm improvement.

Side effects: what you should realistically prepare for

GnRH-a: often effective, often rough

GnRH-a can be very effective, but side effects can be significant because estrogen drops. Common issues include hot flashes, sleep disruption, mood changes, vaginal dryness, libido changes, and (with longer use) bone density loss. Many clinicians use add-back therapy (small doses of hormone) to reduce side effects and protect bone—this is something to ask about directly.

Dienogest: often more sustainable long-term, but still not “nothing”

Dienogest is frequently used long term in endometriosis care. Some people do very well; others stop due to side effects such as irregular bleeding/spotting, mood symptoms, acne, headaches, breast tenderness, or bloating. In the long-term case experience referenced here, no significant adverse effects were reported—but again, that’s only two individuals.

If you have a history of depression/anxiety, PMDD, migraines, or severe hormonal sensitivity, it’s worth planning ahead with your clinician for close follow-up and a clear “what we’ll do if side effects show up” plan.

Who might consider this option (and who might not)?

This combined approach may be worth discussing if:

• Your symptoms strongly suggest cycle-linked TES (especially hemoptysis)
• Surgery is not available, not preferred, or you need symptom control before/after surgery
• You need a plan that is potentially long-term and fertility-sparing (meaning it doesn’t permanently remove reproductive organs), even though it does suppress ovulation while you’re on it

It may be a less good fit if:

• You cannot tolerate hormonal suppression or have had severe reactions in the past
• You have contraindications to progestins (your clinician can help determine this)
• You are actively trying to conceive right now (treatment would typically pause fertility attempts)

Practical takeaways: what to ask your doctor

Bring these questions to your next appointment (gynecology, pulmonology, or a combined team):

• “My symptoms track my cycle—could this be thoracic endometriosis syndrome?”
• “Would a short course of GnRH-a followed by dienogest maintenance make sense for me?”
• “If I use GnRH-a, will you prescribe add-back therapy to reduce side effects and protect bone?”
• “How will we measure success—symptoms only, CT imaging, or both?”
• “What side effects should make me stop the medication or call you urgently?”
• “If this doesn’t work, what are the next options—surgery, different hormones, or a referral to a TES-experienced center?”

Red flags you should not push through

TES symptoms can overlap with serious lung issues. Seek urgent care if you have significant shortness of breath, severe chest pain, fainting, or large-volume hemoptysis. Even if you strongly suspect TES, it’s still essential to rule out emergencies like pneumothorax or pulmonary embolism.

Reality check: what we still don’t know

This approach is promising—but the evidence base here is low strength (case reports). That means:

• Your outcome could be better, worse, or different
• Side effects in the real world may be more common than what two people experienced
• TES itself has different “types” (hemoptysis vs pneumothorax vs nodules), and the best treatment can vary

Also, hormones are not your only option. Some patients do best with a combined strategy (for example, surgery plus medical suppression afterward). The most important practical point is that you deserve a coordinated plan—often involving both gynecology and a chest specialist—and a way to reassess if the first attempt doesn’t meet your goals.