March 2nd. 2024
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March is National Endometriosis Awareness Month so this blog is dedicated to raising awareness about the fairly common and often debilitating condition. We will dive into the signs and symptoms, diagnosis, treatment options, and how pelvic floor physical therapy can help. So buckle up, I'm going to get unfiltered and let my passion fly!
What is Endometriosis?
Let's Start with the basics. Endometriosis is a disease in which tissue similar to the lining of the uterus grows outside of the uterus which starts around the first menstrual period in females or those assigned female at birth. These abnormal tissues are most commonly found in the pelvic organs including the reproductive organs, intestines, bowels and bladder. It is also commonly found in the pelvic muscles and connective tissues. However, these tissues are not simply a "pelvic disease"; in severe cases endometriosis has been found int he organs of the abdomen, the breathing diaphragm, and the shoulder to name a few. Endometriosis causes a chronic inflammatory reaction that may result in the formation of scar tissue within the pelvis and other parts of the body which can lead to chronic pain and dysfunction.
Now I want to make something very clear here, the tissues are similar to endometrial tissues NOT identical to endometrial tissues. This is an important distinction because if you say identical to endometrial tissues it insinuates that the uterus is the problem but that is categorically false. Although there is no known cause of endometriosis we do know that the disease seems to be dependent on the hormone estrogen. Estrogen is made by the ovaries, fat cells, and adrenal glands in women, not the uterus. There are other factors that may also play a role in developing endometriosis including retrograde menstruation (a largely debunked theory but it is still circulating in the medical field), cellular metaplasia, and stem cell changes. Basically, endometriosis is an extremely complex and not well understood disease so to say that it’s simply a problem with the uterus is not only incorrect but more importantly it is demeaning and condescending to those who suffer with the disease.
I know many of you reading this may never have heard of endometriosis and may think this is a rare condition. But the truth is that at least one in ten women or 10% of the female population worldwide has endometriosis so even if you don’t have the disease you likely have someone in your life that does. And the scarier fact is that the incidence is likely underestimated since most women are not properly diagnosed for 10 YEARS. That’s 10 years on average for women suffering with debilitating pain and infertility to get diagnosed and treated correctly which means some women take much longer than 10 years to get help. That is a statistic that is downright infuriating and needs to be changed but more on that later.
What are the symptoms?
For some people, endometriosis does not have any signs or symptoms. But for the majority of women they do have symptoms but they can vary greatly from woman to woman. Most commonly people will complain of pain in the lower abdomen and pelvic region. This pain may occur during vaginal penetration (sex, gynecological exams, tampon use, etc), during menstruation, or when using the restroom (#1 and/or #2). Other common symptoms include chronic pelvic pain, heavy bleeding during or between periods, bloating or nausea, fatigue, and depression and/or anxiety. Endometriosis can also cause infertility and research has shown that 7 in 10 of those with pelvic pain and infertility will have endometriosis.
How is it diagnosed?
The difficult aspect of the symptoms of endometriosis is they are common with other disorders as well. This is part of the reason it takes so long for many women to get diagnosed. The other part that causes a delay in diagnosis is that there is really only one true way to diagnose endometriosis: surgical biopsy with histological verification. Although other imaging techniques (i.e. ultrasounds and MRIs) can sometimes find lesions, especially if ovarian cysts are found, most endometriosis will be missed with standard imaging and blood work. Unfortunately, many women with these symptoms will be dismissed and made to feel she is “crazy” when she does not respond to the usual treatments for symptoms mentioned above or when testing comes back “normal”. So many women will continue to deal with the symptoms and think it is all in their head which is what happens to a lot of women in medicine in general (read the books “Doing Harm” by Maya Dusenbery, "The Pain Gap" by Anushay Hossain and "All in Her Head" by Elizabeth Comen for more on this).
Another large barrier to endometriosis care is that most doctors, even many gynecologists, do not have proper training in how to diagnose and treat endometriosis. It is just simply not taught in standard western medicine! And if that is not maddening enough, far more research funding is given to erectile dysfunction than endometriosis. In fact, there is about 5x more funding into ED research that affects 19% of men than premenstrual syndrome that affects 90% of women. I could go on and on about the disparity of women in research and medicine for a long time so let's get back to the topic at hand. Furthermore, if your surgical biopsy is performed by a surgeon who is not familiar with what endometriosis looks like, endometriosis lesions can easily be missed. If it sounds complex it’s because it is complex. Ultimately, if you are suspected of having endometriosis you need to find an endometriosis specialist with a good track record.
How is it treated?
There is no cure for endometriosis but there are ways to manage the disease. The gold standard for treatment is complete excision of the tissues, meaning surgical removal. This is the best way to remove the abnormal tissues and in many cases this is permanent. Recurrence rates are low when the procedure is performed by an endometriosis surgical specialist, however, if areas of diseased tissue are left behind, endometriosis will likely continue to grow and return. There are two forms of surgical treatments that do not eradicate the disease and leave the individual vulnerable to progression of the disease and continued symptoms: ablation (burning the tissue off) and incomplete excision (not fully removing the tissue). If your doctor is mentioning one of these two options, it might be worth getting a second opinion. Other forms of medical management include medications to decrease inflammation, hormonal birth control to stop menstruation or hormonal medications to induce menopause. In many cases, endometriosis will become less of a problem in menopause since estrogen levels decrease during this time but for some the symptoms will continue.
Additional therapies that can help immensely with symptom management and returning to function include pelvic floor physical therapy, diet and nutrition counseling, pain management, and mental health counseling.
What can pelvic floor physical therapy do?
All of the therapies mentioned above are so valuable but let’s focus on pelvic floor PT. So what is pelvic floor PT? Pelvic floor PT is a specialized form of physical therapy that helps address dysfunctions in the pelvic floor muscles including pain conditions, urinary or bowel problems, weakness, and prolapse to name a few. Specifically for endometriosis, PT will focus on assessing pelvic floor muscles for tightness, pain and overall coordination as well as looking at the ligaments, joints, nerves, and fascia of the pelvic girdle and spine. Proper assessment of the pelvic floor does include an internal vaginal and/or rectal evaluation. Although this sounds invasive and intimidating it is vital to finding areas of dysfunction that you cannot get to otherwise and is the only true way to see how the muscles are functioning. Once areas of concern are identified, your PT will create a plan of care to address those areas with a combination of hands-on manual therapies, stretches and exercises, and lifestyle modifications to allow you to return to doing what you love.
For many people with endometriosis, years of chronic pain have caused their body to go into protection mode. Muscles will guard around the painful area and gradually the muscle guarding spreads over time to other regions of the body. This serves a purpose if you are temporarily guarding to prevent injury but when it occurs for years it becomes a huge problem and creates a cascade of negative events. For instance, if you are tensing and guarding your abdominal muscles chronically you will start to have more shallow breathing which in turn will make your nervous system more sensitive and your body won’t be able to get as much oxygen to promote healing. Poor breathing then can cause higher anxiety, disrupt sleep patterns, and raise cortisol levels. If your abdominals are too tight to allow for normal spinal and rib motion then your neck, shoulders, and hips will all have to work harder and in turn get tight and angry. And so on it goes.
Fun fact, everything in the body is strongly interconnected so if something goes awry in one area it will cause issues throughout the entire body. So if you find yourself clenching your jaw and grinding your teeth or your shoulders are always up in your ears you are likely clenching your pelvic floor muscles. What’s the big deal with clenching your pelvic floor muscles, doesn’t that mean they are strong? Uuuuummm that’s a big fat NO. Having tight pelvic floor muscles causes pelvic pain, back pain, and hip pain to name a few. And tight muscles are almost always weak muscles. So not only will you not be able to have pain free, enjoyable sex, you will also have urine leakage. I don’t know about you but that sounds miserable.
As you can see, endometriosis wrecks havoc on your entire body from head to toe. In my experience in working with patients with endometriosis the pain can be completely debilitating and life altering. I have had patients lose their jobs due to severe pain causing them to miss work. I have had patients have relationship trouble due to the pain disrupting their intimacy and social activity. I have had patients struggling to conceive and having emotional distress related to infertility. That’s why I am passionate about spreading awareness about this disease and trying to do my part in progressing how care is given to women. Trust me, I never thought my PT career would take me into pelvic health but now that I am here I can never go back and will continue to fight for women.
Last thought that not only relates to endometriosis but relates to all pelvic health and women’s health. We need to break down the stigma around talking about pelvic health, normalize sexual education and mental health, and tear down the patriarchal medical system that marginalizes women. And that change starts with you and I.
If you want to learn more about endometriosis or get involved please visit the unaffiliated links below.
Nancy’s Nook (education and resources)
Endometriosis Research Center (education and resources)
Center for Endometriosis Care (education and resources)
EndoWhat? (Watch documentary “Below the Belt”)
iCareBetter (endometriosis specialist finder)
If you or someone you know is struggling with endometriosis please find a pelvic health physical therapist to add to your care team. A book that is highly recommended for anyone with endometriosis is "Beating Endo" by Iris Kerin Orbuch and Amy Stein. And as always, reach out to me with any questions or if you are interested in receiving care from our team. Drop a comment, question, or thoughts below! Like and share to spread awareness.
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