✨What is Endometriosis?✨
Endometriosis is a chronic illness where there is presence of endometrial-like tissue found in extrauterine sites. Although Endometriosis largely affects females, the disease can affect both menstruators and non-menstruators, including cis males.
There are four stages of disease: I-minimal, II-mild, III-moderate, and IV-severe. It is important to note that oftentimes, the severity of symptoms do not correlate with the staging. The endometrial-like tissue typically develops on the pelvic structures in the early stages, but is often later found in areas outside the reproductive organs including the diaphragm, lungs, gastrointestinal tract, urinary tract, and more.
✨What does Endometriosis feel like?✨
Symptoms range from mild to debilitating and include but are not limited to:
chronic fatigue
bloating
abdominal pain
crippling menstrual pain
low back pain
leg pain
joint pain
bowel dysfunction
urinary dysfunction
infertility/pregnancy loss
painful intercourse
migraines
coughing up blood in cases of pleural/thoracic endometriosis
lung collapse in cases of pleural/thoracic endometriosis
ruptured cysts
It’s important to note that Endometriosis can be wildly unpredictable. This is a very general list of symptoms and no two cases are the same.
✨How is it diagnosed?✨
The unpredictability of the disease and delay in correct diagnosis creates the perfect storm for patients fighting for answers. Due to limited research, dismissive doctors, and a wide range of symptoms, patients are often misdiagnosed. While exams, bloodwork and imaging tests are typically used to gather information about a patient’s symptoms and can help in forming suspicions, Endometriosis can only be diagnosed through surgery and biopsy. If your doctor diagnoses Endometriosis before surgery, that is a big red flag 🚩 and an indication that it is time to consult an Endometriosis excision expert.
✨What types of treatment are available?✨
Although there are hormonal therapies and medications available, it is important to note that these options suppress the disease, not treat it. While some patients may find relief from symptoms this way, the disease will continue to progress. If your doctor recommends hormonal therapy or medication, that is also a big red flag 🚩 and an indication that it is time to consult an Endometriosis excision expert. This method only treats the symptoms, not the disease!
The 🏆 gold standard treatment for Endometriosis at any stage is excision surgery with a multidisciplinary approach. In this type of surgery, the disease is cut out with support from different types of expert surgeons, including bowel surgeons and thoracic surgeons. Generally performed laparoscopically, excision of 100% of the disease gives patients the best chance for long term relief. Few surgeons have the training to effectively diagnose and perform excision surgery, often resulting in significant delay in diagnosis and multiple failed surgeries.
Following surgery performed by an excision expert, many patients find further relief with pelvic floor physical therapy.
✨How do you find an excision expert?🩺
The place to start is the iCareBetter list. All doctors listed have had their principles / philosophies, approach to treatment, and surgical skills reviewed. Members of their multidisciplinary teams are also reviewed. Surgeons are listed with their specific expertise so patients are able to choose a surgeon based on their needs and surgeon skill.
✨Want to learn more?📖
Visit Nancy’s Nook, a resource that has been life changing for me and so many before me. Nancy’s Nook is a self-guided learning library in the form of a website and Facebook group, containing information collected and shared over many years. Files contain scientific studies on Endometriosis, hospital packing lists, questions to ask your surgeon, doctor reviews, and much, much more. I cannot recommend this one highly enough!
Leading the charge standardizing expert Endometriosis treatment is the Center for Endometriosis Care in Atlanta. Their website is an invaluable resource containing countless files of the most up to date information. I also cannot recommend this one highly enough!
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Thank you for reading my Endometriosis summary! Wishing you pain free, musical days always! 🎶
Sincerely,
