CATAMENIAL PNEUMOTHORACIES (CPTs)

BASIC DEFINITION
CPTs are when a woman’s lung (the right lung in more than 90% of cases) collapses within hours, or even minutes, of the onset of her menstrual periods. Although often not confirmed by visual observation of endometrial colonies during surgery, most cases are nonetheless considered to be caused by pulmonary endometriosis.

“Catamenial” is Greek for monthly, and a pneumothorax (PT) is a collapsed lung.

Actually, in my opinion, “collapsed” is a misnomer because a lung doesn’t deflate like a balloon that’s been punctured. Instead, it’s compressed by the build-up of pressure, either by air or by blood (hemothorax), outside the lung. Fortunately, each lung is contained within its own sealed-off chamber, so the compression of one lung doesn’t affect the other. Hence, when a lung’s alveoli are somehow compromised, air escapes with each inhalation and builds up between the visceral pleura which lines the lung and the parietal pleura which lines the ribs. The visceral pleura has little feeling, but the lining of the ribcage is profusely endowed with nerves. That’s why a mere bruised rib hurts so badly. And it’s why a collapsed lung can be excruciating.

Doctors, upon seeing the lung’s x-ray, describe the extent of the collapse as a percentage, with an 85% PT being considered a complete collapse. This method of description estimates how much of the chamber now contains air instead of lung, and the lung, when compressed to its limit, still takes up about 15% of the chamber. So, a slightly collapsed lung might be called a 10% PT, a medium collapse might be labeled a 40% PT, and on up.

MY 12 YEARS WITH CPTs
In 1987, at the age of 36, I suffered what I would eventually learn had been my first CPT, or at least my first huge one. During the next 12 years, my right lung would collapse more than 100 times despite two surgeries. For any woman who has had mysterious, serious, chest pain with her menses, I write my experiences for her to contemplate as this is a little known and even lesser cared about affliction among today’s busy medical profession.

I was 5’3” tall, slim, athletic, and muscular. My periods hadn’t started until my mid teens and were all over the calendar, if I had them at all. It wasn’t until my early 30s that I settled into a very regular 28 day cycle.

On an otherwise normal, physically active day, about an hour after my period started, I was hit with such all-encompassing chest pain that I wondered if I was having a heart attack. In fact, the pain was emanating from my right side, but I couldn’t even tell. I soon decided it couldn’t have been my heart, and I cyclically lived like that until I finally couldn’t stand it and went for x-rays nearly two years later. Turns out, I’d had a complete PT the whole time. I’d recognized early on that whatever was wreaking havoc with my chest and esophagus was coming with my periods and trying to heal after mid month but never had time to give me more than slight relief before the whole list of painful symptoms would start again.

The day my PT was finally diagnosed, I was admitted to the hospital with what was supposed to be a 2-3 day stay on a chest tube, but it was two weeks before I could finally go home. The procedure for relieving a PT is to insert a flexible tube between two ribs into the patient’s pulmonary air pocket, then connect the tube to a machine that gently sucks out the air. In my case, because I’d been collapsed for so long, my lung refused to “rise”, and when it finally did, it took several more days to wean me off the machine without my lung immediately re-collapsing.

It was fabulous to feel normal again, but, of course, two weeks later, my period and my next PT returned. I fought the idea of the doctors’ recommendations for surgery, but, five months after my diagnosis, I did relent to having a surgical pleurodesis.

A surgical pleurodesis addresses the symptoms of a PT, not the cause. It’s an effort to mechanically disable the visceral and parietal pleura, which normally exist tightly alongside each other, from being pried apart by leaking air. To accomplish this, the entire lining of the chest wall is scraped raw with the intent that the two pleura will heal together as one. Whereas resultant adhesions are the fear of many surgical recoveries, this is one surgery whose sole goal is to create one gigantic adhesion.

The surgery was a failure. Performed during the third day of my menses, 25 days later, my period and next PT returned. The only difference now was that the pain of a PT against the still sore lining of my chest cavity was worse than ever. And my incision, which ran from the side of my breast around to my spine, would be hyperesthesic (barely able to be touchable) for a decade, and my resected rib (or something else they did) would cause daily discomfort for the rest of my life.

Throughout the following year, I tried to attack the problem from the angle of stopping my periods. My husband and I had never wanted children, but the US government still considers women baby machines above all else, so it was difficult to find a surgeon who would risk his career by spaying me, despite the fact that I was now pushing 40.

Consequently, I had to endure various drug administrations to stop my periods until I finally demanded enough was enough. Stifling my periods this way wasn’t stopping my PTs anyway, so I finally found a gynecologist who was familiar with CPTs and willing to perform an oophorectomy. Removing one's ovaries is all that's necessary to stop one's periods, obviously, but I also wanted a complete hysterectomy (uterus and cervix) to eliminate as many possible future cancer sites as I could.

So, at age 39, three years and nearly forty PTs after the onset of my condition, I had an oophorectomy and complete hysterectomy. But, amazingly, a couple of weeks later, my PTs returned and continued to plague me every 28 days for another three years. Eventually, they became smaller and further apart until, by the time I was 48 or 49, I could confidently declare myself CPT-free.

In summary, nothing could stop my CPTs other than reaching what was probably my natural menopausal age. Other than the annoyance of an occasional small PT if I have a violent cough for several days, my worst lingering symptom is the nearly nonstop discomfort from the lung surgery.

I was a reference person for CPTs for the national Endometriosis Association, and of the handful of women around the world who contacted me, many of those who'd had a pleurodesis also continued to have strange rib pain. It's been described as fingertips inside one's ribs clawing to get out and a tight metal band that relentlessly digs into one's ribs from the outside. Since our pain is in front, I assume it’s referred pain, which means the actual site causing the pain isn’t the site where the pain is felt.

A couple of women during the 90’s told me they’d had their pleurodeses done via thoracoscopy, meaning, like a laparoscope in abdominal surgery, their thoracic procedure was done through a tiny incision. However, recent patients have told me that the older, more invasive procedure has proven more successful, so it appears that, at least depending upon one’s doctors, the status quo has gone back in time.

There is also chemical pleurodesis where a caustic cocktail is injected between the pleura to wound them, but I was told it's not nearly as effective.

WHAT TO DO?
So, what can a woman with CPTs come away with after reading this? Well, I’m not in the medical profession, and I’ve been, for the most part, out-of-the-loop for years, but I do know that a woman with this condition needs to take her destiny into her own hands. She needs to learn all she can, question her doctors’ decisions, and take control of what’s done to her. The common denominator among all the women who contacted me was their horror stories of doctors’ disinterest, skepticism, and blatant incompetence.

With that in mind, and sparing the reader my own list of outrageous medical insults and malfeasances (well, okay, I do include a couple), I can offer the following suggestions:

• Get chest x-rays during a couple of periods to determine if your monthly pain is due to CPTs.
• If you opt for surgical pleurodesis, know that the success rate isn’t great, and don’t do it during the first two weeks of your cycle because the hormones that are causing and maintaining your collapse will continue to do so until approximately mid month before they switch off (it’s an estrogen versus progesterone thing). And as long as your lung isn’t fully re-inflated, your pleura can’t contact each other enough to adhere.
• Also, if you have a surgical pleurodesis, make sure you tell your surgeon to reconnect any ribs that he resects (cuts apart). My surgeon removed an inch or so of my rib and left it to grow back together. Instead, the two ends grew past each other. Who knew I had to tell him not to be so lazy.
• Don’t bother getting chest tubes for your PTs. For the same reasons as just mentioned for surgery, a chest tube will only “stick” after mid month, and by then, your body will be starting to heal by itself. A small PT will have time to heal quite a bit. A large one won’t, but in both cases, it’s just going to happen again with your next period, anyway.
• However, if and when you do need a chest tube, be sure to ask for it to be directly inserted into your air pocket. This will cause the least pain, both during its insertion, which is done without anesthesia, and throughout the time it's in place. My two week chest tube was inserted outside a bottom rib, snaked through the muscles outside my ribcage up to my collar bone, then curved 180 degrees before being inserted between my ribs. Because such a long stretch of muscle was invaded, constant, powerful muscle spasms tried to reject the tube and I was in amazing pain the entire time. The surgeon’s reason for this when I asked him two weeks later as he ripped it out? He assumed I wouldn’t want a scar showing if I wore a bikini, and complained that, unlike most women, I had no fat lining my ribs through which he normally slides the tube. So I guess it was my fault.
• If you’re planning on having children, note that, not surprisingly, pregnancy stops CPTs. In some cases, they never return. In others, they do recur after giving birth, with the length of time post-partum varying among women.
• Consider getting an oophorectomy. They have a higher success rate than pleurodeses, and logic dictates that they should always work, despite the fact that mine mysteriously didn't.
• If you do have an oophorectomy, ask for an epidural and twilight sleep (or stay awake as I did) instead of risking the more dangerous general anesthesia. You’ll be safer during surgery and will awaken more easily and quickly afterward. In addition, if you ask that they leave it in during the 2-3 days you’ll be hospitalized, being nearly pain-free will greatly enhance your recovery. I was cleaning stalls the day I got home and riding my horses 7 days later, and, yes, I did have regular surgery, complete with 6” incision. Unfortunately, an epidural apparently won't suffice for a pleurodesis which is, of course, a much more complicated surgery.
• If you’re approaching menopausal age, you might just want to hang in there and do nothing because menopause should slowly resolve your CPTs naturally.
• Your pulmonary doctor may warn you of the potential danger of large PTs causing what’s called a tension pneumothorax . This is when the pressure behind a complete PT suddenly compresses the mediastinum (the center of the chest behind the breastbone) which contains such vital organs as the heart, trachea, and esophagus, and quickly kills you. Tension PTs are said to be 100% fatal. Listen to your doctor, but know that a total of at least 3 years out of my 12 still relatively active years with nonstop CPTs, was spent with complete PTs, and I’m still here.

WHAT DOES A PNEUMOTHORAX FEEL LIKE?
Women who suspect they may be suffering CPTs usually ask what my own symptoms were like so they have a comparison.

My PTs always started with pain and tremendous pressure in my esophagus for an hour or two until the pain of the “rub” began. Repeated PTs, in fact, can cause hiatal hernias from the constant, tearing pressure, and I would become a case in point. The "rub" is the first little air pocket that’s strong enough to pop the pleura apart. My rub was low on my ribs toward my spine.

As the air pocket enlarged with each breath, the pain spread throughout my right chest and across my entire diaphragm and expressed itself as pressure (like an elephant standing on me), continual searing pain, plus stabbing pain with each breath. This would last 3-4 days before my body adjusted to the pain, which I'll call "stabilizing" at this state, until mid month whereby things slowly subsided to a half or third of what they'd been, depending on how large the PT was. And then, of course, day 29 triggered the start of it all once again.

Air always seeks the highest point, so there was additional pain whenever my torso changed angles. For example, when I bent forward, the pain of the air pocket rolled from beneath my collar bone to around my back and toward my hips. When I straightened up, the pain reversed the course. Each little bubble in the pressurized, frothy pocket felt like the sharp edge of a stone against tender flesh.

For six years, I could only sleep on my back or in a chair because any other position triggered increased pain and uncontrollable coughing. Eventually, I was able to lie on either side for increasingly longer periods until I finally reached normalcy. I'm not able to lie on my stomach due to injuring my back in a horse wreck when I was 25, so I don't know how PTs would have affected that position.

So, such was life with CPTs. If you think this scenario fits you, do get x-rays. Today’s treatments may be more successful than mine were so many years ago, but again, make sure there’s some sense in what your doctors tell you. And remember, the term “hysterectomy” means to remove a woman’s hysteria. No joke. That’s what surgeons thought of women many decades ago, and that attitude can still be found in today’s medical profession.

Wendy Tobler

w*tobler@tobler*glass.com (remove both asterisks)