What is Endometriosis?
As pelvic floor therapists, we have gotten the privilege to meet and work with many women who suffer from symptoms of endometriosis.
We recently participated in a talk with our fellow pelvic PT’s, and we were able to look at the complicated history of this disease. Although no one is sure how long it has been affecting people with uteruses; it really started to be researched in the 1920’s. John A. Sampson, confirmed the presence of endometrial tissue outside of the uterus, while performing surgeries on women during their menstrual cycles. What he discovered, was that there were lesions outside of the uterus; and that these lesions would bleed at the time of menses. He is the clinician that gave it the name: Endometriosis.
The funny thing is that the theories on endometriosis haven’t been confirmed or changed much since the 1920’s. They have evolved, but the truth of the matter is, we still do not know WHY endometriosis occurs. This is what we do know: it is a condition where the endometrium grows outside of the uterus, and it is most commonly found on the ovaries, fallopian tubes, and lining of pelvis. The endometrial tissue thickens, breaks down, and bleeds each menstrual cycle. This tissue then gets trapped in the pelvic cavity, which creates inflammation, and leads to growth of adhesions and scar tissues. This can lead to the pelvic organs adhering together, and infiltration into the muscles and nerves - leading to dysfunction and pain.
The American Society for reproductive medicine came up with a staging system; categorizing the severity of women’s endo into 4 stages. This is based on how infiltrating the lesions are, and if they are found outside of the pelvic cavity. There are accounts of women having lesions in their noses, and suffering nose bleeds every menstrual cycle. So they surely are not localized to the pelvis. What this tells us, as clinicians, is that no two women are the same. And no two people will present with the same symptoms. This has been part of the reason of why endometriosis is so challenging to diagnose and treat. The other reason is likely because only women suffer from this disease.
In our medical community, women have been historically ignored and under treated. This is apparent in how, on average, it takes 8 years before a woman is able to be diagnosed with endo. On average, it takes 12 years after the first symptoms appear to be diagnosed. Isn’t this unbelievable? So all of this time, women’s lesions are growing and growing, and causing more and more damage. This is also why, the majority of endo cases are diagnosed in fertility clinics. Because a lot of women, who suffer from endo, can also suffer from infertility from the deep infiltrating lesions that penetrate their uterus. So eventually they end up in a fertility clinic, only to discover that they have endometriosis.
Some of the symptoms that develop due to endometriosis are — pelvic pain, painful intercourse, nerve pain, back pain, accompanied auto immune diseases, frequent migraines, fatigue, heavy and painful periods, and fertility issues.
Now keep in mind, that this is not an inclusive list; and not everyone will have one or all of these. One of the most common issues that accompany Endo is bowel and bladder dysfunction. In fact, usually women are incorrectly diagnosed with IBS first, by years, before getting their Endo diagnosis. This is a problem, because then women get sent down the wrong medical path for years. This is why it is important that our medical community become more efficient at finding and diagnosing endometriosis.
Currently, there is no cure for Endo. However, it is of the outmost importance that if someone has more severe endo, that they are given the opportunity to pursue an Excision surgery. This is different than the most common surgical treatment of Ablation. The analogy is that Ablation is the equivalent of taking a flame thrower to a weed; it will only get what is on the surface. While, Excision is physically digging under the root system and fully removing it. The unfortunate thing is that there are few surgeons in the country specifically trained in Excision surgery; and that none accept insurance. This is because there is only ONE charge code allowed by insurance, and that is for ablation surgery. Therefore, the majority of women get treated with exploratory surgery and ablations; which for 40% of the population the lesions will return within 1-2 years. This is why it is important for women to be diagnosed and fully educated on treatment options; before being pushed to exploratory surgery and ablation surgery.
It’s important that women — of any Endo stage — work with an experienced pelvic floor therapist.
Physical Therapists will help treat the symptoms and byproducts of Endo. Often times, women will start to respond to their painful lesions by tightening their abdomen and pelvic floor; this can lead to their bowel, bladder, and sexual dysfunction. As well, their nervous systems get unregulated by the infiltration of their organs, nerves, and muscles. PT’s are trained in providing exercises and manual work to help bring this back down. Most importantly, we are here to help re-educate your bodies on how to move again, in a productive and non painful manner.
Often times, it is a pelvic floor PT that first suspects that endometriosis is the main reason for a patient’s pain and dysfunction. Which is unfortunate; because by the time a patient is referred to us for their symptoms, it usually means that they have had them for a long time. However, we can help advocate and direct our patients in the direction of getting a diagnosis and medical treatment, while helping with in any pre and post surgical rehabilitation, should surgery be needed. Otherwise, with less severe Endo, then we will ultimately be the ones that are helping break up scar tissue and to improve the musculoskeletal dysfunction that has been created.
At the end of the day, women need someone to listen to them, and not just pass them on to the next medical provider. This is what has been established as the norm in our medical community, and it is time that we start changing the rhetoric. Method Physical Therapy feels strongly about helping women navigate the system, so that they can quickly get the care that they need. And this goes for any women centered diseases. Everyone should be educated on their symptoms, and the need to advocate for themselves to help protect the future of their bodies. As mothers and medical providers, we are passionate about advocating for women and assisting in getting this population the care that they truly deserve.