The Lung Bleed vs. The Lung Period
Bouts of hemoptysis (coughing up blood) that worsen during a monthly menstrual cycle are becoming a frequent problem for CF women.1 Could hormones be playing a part?
I am a well-seasoned lung bleeder. My first bronchial artery embolization (BAE) was back in 2010 and I've had another five since. Kudos to the surgeon who never gets tired of my troublesome, bulging blood vessels.
What causes hemoptysis?
Reasons for hemoptysis in CF:2
- Changes in atmospheric pressure (low)
- Pre-existing pulmonary damage
- Over inflation of the lungs
- No obvious reason at all because CF can to be tricky like that.
Yet, it was only last year that I discovered my bleeds were not always because of cystic fibrosis. A new and quite frankly, freakish phenomenon which I have coined - the lung period, was causing havoc in my airways.
How did I discover my lung period?
After exhausting all treatment options for my recurring hemoptysis, I was still suffering. I decided to use a diary to track what was happening. The idea was to identify a link and I found one. Every Month. My Period. Day 2. Without Fail.
I tracked this for 6 months before mentioning it to my doctor because I thought she would completely dismiss it but she didn't. Medically speaking, the term "lung period" doesn't cut it. The correct term is thoracic endometriosis.
What is thoracic endometriosis?
The lining of the lungs shares the same endometrial cells as the female reproductive system. Yes, that is right. My bleeding lungs were actually purging old, plaque-like legions that thickened and then shed just like in my cervix. This highlighted that my lung bleeds were not always caused by infection, inflammation, or low atmospheric pressure.3,4
Thoracic endometriosis only occurs in a small number of women already suffering from endometriosis of the female reproductive organs. Some women will be non-symptomatic whilst others may go misdiagnosed because of other disorders such as IBS or CF Gut.3
Symptoms of endometriosis include:5
- Pelvic pain and heavy periods
- Pain during sexual intercourse
- Extreme bloating - I thought this was due to bowel blockages, turns out it wasn't
- Acute period pain, causing you to stop managing your daily routines - being curled up in fetal position isn't just a "heavy period"
- Pain when urinating or opening your bowels - again, this was masked by CF gut
- Difficulty getting pregnant - CF problem too, I noticed a pattern here
All the symptoms of thoracic endometriosis were identical to my regular CF flare ups. I always felt unwell in the weeks leading up to and during my menstrual cycle. Symptoms included increased coughing, shortness of breath, chest tightness, chest pain and fatigue. It was not a surprise to learn it had been going under the radar for so long. It can easily be missed when you already have chronic lung disease.
Getting diagnosed with thoracic endometriosis
I was referred to a gynecologist who diagnosed endometriosis on my ovary, bowel, and bladder during a laparoscopy. After removal of the tissue, I was started on a hormonal IUD to slow the growth of endometrial tissue both in my reproductive organs and my lungs. It's known that 1 in 10 women suffer from endometriosis.6 The tricky part is getting a diagnosis which takes, on average, 7.5 years.7
It is tricky to diagnose thoracic endometriosis in CF because most diagnostic tools such as CT scans and biopsies render useless due to all the pre-existing lung damage. In light of this, it was recommended I continued treating my lung bleeds as if it were thoracic endometriosis and, if the bleeds discontinued, we had our answer.
I had always suffered from troublesome periods, heavy bleeding and pain, bowel issues, and bloating, but I just thought this was normal or part of CF gut. I spent years working alongside a CF gastro-consultant who was often puzzled at why the treatments were not working for my chronic constipation and bloating. Now it was all starting to make sense.
Over the last year, the hormonal treatment has worked wonders. I haven't had a lung period since. Finding out about my new diagnosis of thoracic endometriosis was daunting at first but it turns out, it was just another part of the CF puzzle that needed to be put into place.
Have you or a loved one with cystic fibrosis experience thoracic endometriosis? Share your experience in the comments below.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?