Ep 315 – Endometriosis where?: “I Have a Client Who . . .” Pathology Conversations with Ruth Werner

0:00:01.4 Ruth Werner: Hello, I Have a Client Who listeners, Ruth Werner here, and I'm so excited to let you know that my library of online self-paced continuing education courses has just expanded. I now have a two hour ethics course called A Doctor's Note is Not good enough And What is Better. This NCBTMB approved course goes into why a doctor's permission or approval or even a prescription doesn't provide the legal or safety protection you might think it does. Then we look at how to start useful conversations with healthcare providers that will actually get us to safe and effective massage for our clients with complex conditions. Visit my website at ruthwerner.com for more information and to register for A Doctor's Note is Not Good Enough And What is Better.

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0:01:00.6 RW: Hi and welcome to I Have a Client Who: Pathology Conversations with Ruth Werner, the podcast where I will discuss your real life stories about clients with conditions that are perplexing or confusing. I'm Ruth Werner, author of A Massage Therapist Guide to Pathology, and I have spent decades studying, writing about and teaching about where massage therapy intersects with diseases and conditions that might limit our client's health. We almost always have something good to offer, even with our most challenged clients, but we need to figure out a way to do that safely, effectively, and within our scope of practice. And sometimes as we have all learned, that is harder than it looks. Today's I Have a Client Who story comes from someone who attended a class that I taught a few weeks ago. This was a webinar on gynecological disorders and one of the topics we explored was endometriosis.

0:02:00.9 RW: This is a very common situation with which many of our listeners are probably familiar and one attendee put something in the chat of this Zoom class and I asked them to follow up with me about it later. And here's what they sent me. They said, "Just before I signed off, you asked me to get in touch with you regarding my client that has endometriosis. Just to clarify, to the best of my knowledge, she has not been definitively diagnosed with endometriosis of the lungs. This is what has been suggested as an explanation for the tissue mass and pain. Cancer has been ruled out." Well, I wrote back asking if this massage therapist had ever worked with this client and what they hoped for from massage, and this was the response, "Yes, I have worked with her and her goals are to decrease pain and tension in her chest and back and to increase the ability to breathe and decrease stress. I've been treating her with a combination of massage and cranial sacral therapy."

0:02:58.2 RW: Right. I hope that at this point you are wondering what the what! Endometriosis in the where? That's not possible. Ruth has gone totally off the deep end. Yeah, well, that may be true, but it doesn't change the fact that endometrial growths have been found in the lungs, also in the central nervous system and other places far, far away from where they begin. So we're going to talk a little about what that looks like because it's just amazing. But first, let's start with regular garden variety endometriosis, a condition that has the capacity to seriously interfere with people's quality of life. You already know that the uterus is a smallish organ located down low in the pelvis. In a healthy female who isn't pregnant, the uterus is about the size and shape of an upside down pair and the neck of the pair is the cervix.

0:03:56.0 RW: That's what cervix means. It means neck. We think of the uterus as a hollow organ, but when there's nothing growing inside of it, the muscle layer, the myometrium is so thick that it smooshes out almost all of that inner space. Myometrium muscle metrium, the word root metrium comes from the Greek for womb. It also links to the words mater and maternal all referring to motherhood of course, and the endometrium, remember endo means inside is the inner layer of this organ. It is the endo metrium that under hormonal command builds up every month just in case an embryo traveling down the uterine tube is implanted in the uterus. If that happens, the endometrium becomes a kind of nest for this new growth. But if it doesn't, then a cascade of hormones from the pituitary gland and the ovaries signal the endometrium that it is time to detach and slough off through the cervix and out of the body.

0:05:00.7 RW: And this is of course what we shed with a monthly menstrual cycle. Aren't you glad you tuned in today? Right. So when everything works perfectly, then all of this happens on a pretty regular schedule and it shouldn't really hurt, but it often does. And the whole issue of dysmenorrhea or painful menstrual cramps, that's a different topic. So I'll put that aside for now, but I will ask you to remember a little bit more anatomy. The uterine tubes, we used to call these fallopian tubes, but they don't actually belong to Gabriele Falloppio, the Italian anatomist who put his name on them. So now we call them uterine tubes, right? So the tops of those uterine tubes, the left one and the right one have little finger-like extensions called fimbriae, and the fimbriae caress the ovaries and they coax released ova into the tubes. And if fertilization happens, it probably happens somewhere in there.

0:06:00.8 RW: But those fimbriae, they don't completely enclose the ovaries. They allow the uterine tubes to open out into the peritoneal space of the pelvic cavity. The earliest people to recognize endometriosis, which began in our medical discussion about 100 years ago, offered an explanation that is still part of the endo story that we understand today. They suggested that some of the endometrial lining that is supposed to leave the uterus through the cervix and into the vagina during this duration instead backs up in the opposite direction. It goes up the uterine tubes and is released out into the pelvic space, and we call this retrograde flow. The idea is that these colonies of endometrial tissue, they set up shop wherever they land, which is usually on top of the ovaries or somewhere in that neighborhood, on the uterine tubes, on the outside of the uterus or elsewhere in the pelvic cavity or on the wall of the peritoneum, including places that might be really hard to reach with a camera or a cauterization tool.

0:07:09.8 RW: Retrograde backflow might not be the only way this happens though. Endometrial cells can spread through surgical procedures. We've seen this sometimes as a complication of a cesarean section or laparoscopies that were intended to look for endometrial growths, and they have also been seen to use the lymphatic or cardiovascular systems to move to other places in the body. Yikes! And we'll get back to that in a minute. But first, let's talk about what happens once they get started somewhere outside the uterus. Because here's the deal, clusters of endometrial cells can secrete chemicals that stimulate the growth of new capillary beds. Well, that's what they're made of, right? And when blood is delivered to this new colony, it brings along hormones including the hormones that signal when it's time for endometrial cells to proliferate. So what do they do? They proliferate. But what happens when the hormonal signal changes and now it's time to detach and leave the body?

0:08:15.5 RW: Well, these new growth, they have nowhere to go. So now we have lumps of decaying tissue and this triggers an inflammatory response. And what happens while we try to build connective tissue walls around these growths to separate them from the body? It's scar tissue. Next month the colony will grow. It will stimulate more inflammation. These growths may infiltrate the walls of their new homes and cause surfaces to stick and adhere to each other, and all of this can really interfere with proper organ function. However, here's another really quirky thing about endometriosis. Almost all people who menstruate have endometrial cells in their peritoneal fluid during their period. It's common, but these endometrial cells don't always develop into permanent colonies on other tissues. Why do some people get this and some people don't? Well, there are probably several factors including the person's unique immune system and inflammatory function and their exposure to exogenous estrogens.

0:09:24.2 RW: That's estrogens that come from the outside of the body and some other things that we're not going to look at today, but that's a quick flyby of endometriosis in its most common presentation, which is somewhere near the uterine tubes in the pelvic cavity. And those repeating cycles of growth and decay and inflammation can cause all kinds of havoc from pelvic pain to anemia to infertility, or an increased risk of ectopic pregnancy because the uterine tube can get too constricted with scar tissue to let an embryo pass through to the uterus. But it doesn't stop there because as our contributor points out, endometrial growths can be found far, far away from their origins. How do they travel? Opinions vary. Some propose that the endometrial cells can move through the peritoneum all the way up to the diaphragm and then through openings that allow our major blood vessels in the esophagus to pass through, and that's how they can make it into the thorax.

0:10:29.6 RW: Others point to evidence of lymphatic or cardiovascular migration. Endometrial growths have even been found in the central nervous system, so that option makes some sense, but the truth is we don't really know for sure. If her physicians are correct, the person in this week's I Have a Client Who story has these growths in her lungs, and I have heard about this before, but I've never looked at it closely. So I took this opportunity to do some searches for thoracic endometriosis, and here's what I found out. This is a fairly rare situation, that's not a surprise. About 12% to 14% of people with endometriosis develop growths not necessarily close to the uterine tubes and the fimbriae and thoracic endometriosis is pretty hard to diagnose partly because lung biopsies are invasive and risky and they're not considered a great way to make diagnoses. The growths may be trapped within the pleurae, which will limit the freedom of movement in the lungs, or they might be directly on the diaphragm or within the parenchyma.

0:11:35.8 RW: That is the working cells, the alveoli of the lungs, it's almost always just on the left or right side, but I did find one case report about a person with bilateral endometrial growths in their lungs. People with thoracic endometriosis usually also have growths in the pelvis, but not always. Symptoms of thoracic endometriosis might be extremely subtle or extreme and life-threatening. They arise during menstruation when the growths decay and stimulate inflammation and scar tissue production. And when this happens in or on or around the lungs, the person may have shortness of breath and chest pain and shoulder and arm pain, especially if the growths are at the top of the lung and they're irritating the brachial plexus and a cough. Some people develop a complication called catamenial hemoptysis, blood in the sputum. That's hemoptysis during the menstrual period, which is what kata menial means from the Greek kata for by and men for month.

0:12:40.7 RW: That's the same word root that gives us both the words month and moon, and also all those men words in female health like menstruation and dysmenorrhea and menopause and so on. But getting back to our topic, in a worst case scenario, catamenial hemoptysis can complicate to catamenial pneumothorax or hemothorax. The lung could collapse or be damaged from repeating bleeding during a menstrual period. Symptoms are worse during the menstrual period when by the way, all inflammatory markers are high, so many people just don't connect these two phenomena. A cough that gets worse with their menstrual cycle might be a pattern that they just don't notice. If they do, then a variety of images of the chest might be taken at two different points in their cycle to make comparisons. And if endometrial deposits are found, then they could be removed with laparoscopy in the abdomen and pelvis and with video assisted thoracic surgery in the chest.

0:13:41.7 RW: In both treatments, doctors will look for growths on other organs and on the diaphragm. This patient might also be prescribed medications to suppress hormone secretions that trigger the growth of endometrial colonies. And of course, this is something we need to ask about in case there are any side effects. Some of these drugs do increase the risk of blood clotting, so that is something that should at least be on our and our client's radar. What else should we bear in mind about working with clients who have endometriosis? For this client, here are just a few thoughts. To review, this is what our contributor gave us. They said, "My client has endometriosis. She's not been definitively diagnosed with endometriosis of the lungs, but this is what was suggested as an explanation for the tissue mass and pain in her lungs and cancer has been ruled out. I have worked with her. Her goals are to decrease pain and tension in her chest and back and to increase her ability to breathe and to decrease stress, and I've been treating her with a combination of massage and cranial sacral therapy."

0:14:44.7 RW: Let's just think about that for a minute. This client may have endometrial growths in her lungs and she wants to decrease pain and tension in her chest and her back and to increase her ability to breathe and to decrease stress. I have to tell you, I think massage is a fabulous idea. We won't have an impact on whatever is happening inside this person's lungs, but we could have a profound effect on her breathing muscles and her sense of ease. And there's a slew of data about breathing difficulties and anxiety and stress and about massage and breathing and about massage and anxiety and stress, and the whole thing is just a great fit for our work.

0:15:35.0 RW: The combination of massage and cranial sacral therapy sounds great to me if this is what the client likes, but I would also love to promote some focused work on her intercostals and the scalings and whatever gentle pain-free access you can have on the diaphragm just to address whatever muscle tension accompanies this client's perception of her shortness of breath. As someone who lives with a chronic cough, I can speak with experience about what a gift it is to reduce whatever resistance to breathing we can. That said, my general advice about massage for people with endometriosis is to avoid intrusive work in the abdomen while she's menstruating. Things are already inflamed and sensitized, and it may not serve well to interfere in those processes that are already somewhat challenged. I would also remind our contributor to check in about medications and side effects. And if this client does end up needing surgery, remember she's likely to have growths in her pelvis and maybe the rest of her abdomen as well as in her lungs.

0:16:37.1 RW: Well, this is an event with a lot of implications for the timing and intensity of massage therapy. We don't hear about endometriosis in the lungs very often, but endometriosis in the pelvis is extremely common and it can be painful and it can have profound effects on a person's quality of life. Massage won't fix it or reverse it, but we can help to make living with it just a little easier. Hey everybody, thanks for listening to I Have a Client Who: Pathology Conversations with Ruth Werner. Remember, you can send me your I have a Client Who stories to ihaveaclientwho@abmp.com, that's ihaveaclientwho, all one word, all lowercase @abmp.com. I can't wait to see what you send me and I'll see you next time.