By Michele Forsberg PT, MS
Throughout my years treating patients with abdominal and pelvic issues, I am astounded by the misinformation and myths about endometriosis. Patients often find themselves hunting online for more information on this disease. That’s largely because the medical community as a whole has let us down. From misinformation to medical gaslighting, where can we turn for accurate information when many of our providers dismiss and minimize our concerns?
Those of us who are looking for information need credible resources to learn more about finding answers, the right ones. This is why websites like Nancy’s Nook along with her Facebook Group have become the go-to source for reputable information surrounding endometriosis. Gone are the days when we can just go to our doctor and trust that what they are telling us is true. It’s imperative for us to become our own advocates when it comes to diagnosing and treating these complex issues. I say this in the “we/us” voice because I too have been a statistic. I struggled for years with endometriosis before receiving the correct information.
What is Endometriosis?
Endometriosis is characterized by the presence of tissue similar to the lining of the uterus but located outside the uterus. This tissue can cause pain, infertility, and organ dysfunction due to inflammation and scar tissue.
Endometriosis (Endo) is a very complex disease that is very difficult to diagnose and treat. The exact cause of endometriosis is unknown. The belief is that there are autoimmune, environmental, genetic, and inflammatory components to this disease. It rarely occurs in isolation and is often associated with IBS, interstitial cystitis, or fibromyalgia, among others. It is an estrogen-dependent disease, meaning that local estrogen production may stimulate the growth of lesions. It’s a non-cancerous cancer.
Myth #1- Endo is a retrograde flow of one’s period.
Nope, endometriosis lesions are similar to the lining of the uterus but are different in both structure and function, they can produce estrogen and make their own blood supply. These lesions can deposit themselves in the pelvic cavity, the abdominal and thoracic cavity, and have even been found on gluteal muscles! Thus, It’s not just a pelvic disease.
Symptoms of Endo
- Severe pain during menstruation, (A hallmark of early onset is pain that actually begins in the few days leading up to menstruation and then peaks during the first few days).
- Pelvic or abdominal pain (associated with or not associated with menses)
- Low back and/or leg pain
- Pain with sex
- Painful bowel movements
- Digestive symptoms nausea, bloating, diarrhea, and/or constipation
- Painful bladder, and urinary symptoms
- Fatigue
- Infertility, (50% of unexplained fertility is likely due to endometriosis).
Less common symptoms
- Diaphragm and lung endometriosis can cause shoulder pain
- Difficulty breathing
- Coughing up blood etc.
Diagnosis–
It is not unusual for a diagnosis to be delayed for 10 years and passed off as “bad period cramps”, especially when an older member of the family had a similar past experience and never was diagnosed. This is unfortunate because left untreated, endometriosis can be a life-altering disease that can alter physical, mental, and emotional health. It can affect relationships, and the ability to work, go to school and care for oneself.
Because endometriosis is a progressive disease, early diagnosis is important.
Here’s the tricky part, the gold standard for diagnosing it is a surgical biopsy by a skilled surgeon who specializes in and is able to recognize endometriosis. It’s super important for primary care and ob/gyns to recognize the symptoms and be able to provide referrals to specialists who know what they’re doing. Unfortunately, there are not many truly skilled specialists in this field. Specialists put in the time and education required to be proficient in this process. If an obstetrician is busy delivering babies, it’s unlikely that they have the time to learn these surgical skills.
A highly skilled specialist will do a thorough medical history intake to look for signs you might have endo that aren’t always as obvious. They’ll perform a physical examination as well. Ultrasound and MRI can be useful and can often identify cysts called endometriomas, or locations and sizes of other lesions. Again, the true diagnosis must come from surgical biopsy, through laparoscopy. If the laparoscopy is done by a surgeon with less skill, this usually means incomplete treatment because not all endo will be found or removed with excision. This could cause recurrence or worsening of symptoms. And, If you see a specialist who wants to perform ablation procedure, please consider another opinion. Ablation only burns endo at the surface, leaving the disease behind.
Treatment –
Treatment really requires a multidisciplinary approach. Medical treatment can involve drugs that can suppress symptoms but do not eradicate the disease. Some of these drugs can cause long-term side effects. And of course, the gold standard for treatment is complete surgical excision to rid the body of all the endometriosis at the root.
That being said, practitioners other than medical doctors do play a vital role in supporting endometriosis patients in managing symptoms, whether they choose to have surgery or not. Nutritionists, acupuncturists, naturopaths, and mental health professionals are important team members. And last but certainly not least, pelvic physical therapists are a crucial part of endometriosis treatment. That’s us!
Myth #2 – If you take birth control pills for long enough periods of time your endometriosis will be gone.
This is not true, It is important to note that they only suppress the symptoms, not the disease. But they can be good options for some people who are not ready for surgery.
Myth #3, 4 and 5 – Hysterectomy cures endometriosis, Pregnancy cures endometriosis, Endometriosis goes away after menopause.
Nope, Nope and Nope! Remember, it’s not a disease of the uterus, it’s like a non-cancerous cancer.
The role of pelvic PT with endometriosis patients.
So, here’s something interesting, some people are mistaken that the cause of their pelvic pain is endometriosis itself. And having surgery to eliminate the endo will rid you of the associated pelvic pain. This is not true.
Inflammation and scar tissue from the endo cause the muscles, nerves, and organs to have increased pressure on them. As a result the scar tissue often pulls on organs like the uterus and attaches them to the abdominal or pelvic wall. Adhesions can cause obstructions in the intestines and can inhibit movement of fluids through the body’s other tubes (blood vessels, ureters, etc). With all this excess pressure from the scar tissue and organ displacement, the muscles can go into a cycle of spasm and pain. After long-standing chronic pain like this, the nervous system gets involved as well. Thus the patient will need training to be able to relax the muscles. This can all be helped with pelvic physical therapy.
This particular realm of treatment is one of our specialties.
We’ve been treating patients with chronic pain and the sequela of adhesions for a long time. It requires a delicate balance of deep release of dense scar tissue with understanding and listening to the more delicate structures. We balance the manual treatment by subtly addressing the psycho-emotional results that all of this has on the person as a whole. Being able to facilitate calming the nervous system can result in more balanced emotions.
Though our sessions cannot eliminate the disease, they are excellent for helping to alleviate many of the symptoms of pelvic and abdominal adhesions from endometriosis both before and after surgical procedures.
If you’re looking for treatment for the pelvic or abdominal symptoms of endometriosis, or any other condition that causes these symptoms, you can set up a Free Discovery Call to discuss your situation. We do offer opportunities for intensive treatments for out-of-town patients, so whether you live in or around Longmont, Colorado, or not, we may still be able to help you.