What is it?
Endometriosis is an often-painful inflammatory disease in which misplaced tissue (similar to the lining of the uterus) builds up outside the uterine cavity. It breaks down and causes bleeding inside the pelvis, which leads to inflammation, swelling and scarring. Endometriosis can also be extra-pelvic, and can occur in the bladder, bowel, diaphragm, lung, appendix, and in rare cases, the eye and the brain. It affects over half a million Canadians, and approximately 176 million people worldwide.
The signs and symptoms
The most widely recognized symptom of endometriosis is pain during menstruation. This is not limited to, but typically felt in the pelvis, lower abdomen, or lower back area. In addition to painful periods, there is sometimes pain associated with urination and bowel movements. There can also be intestinal issues such as bloating, diarrhea, constipation and nausea, painful intercourse, and infertility.
Christina Paruag is a health advocate and public speaker who has struggled with endometriosis for most of her life. Her symptoms began at eight years old with continuous pain in her stomach. When she had her first period at the age of 12, the pain became unbearable. She had to miss a lot of school, and noticed bloating, irritability, trouble concentrating, and chronic fatigue. As she got older, the bleeding became so bad she would sometimes lose consciousness.
While these symptoms are not experienced by everyone, Paruag’s story makes it clear that the impacts of endometriosis are serious and far-reaching.
You’re not making it up
Paruag’s journey is also a testament to the tenacity and dedication it often takes to receive a diagnosis and proper care. She’s faced ruptured ovarian cysts, depression, isolation, confusion, kidney infections, septic shock, and a near-death experience. Throughout her various struggles, she’s had medical professionals insist it was in her head, that it was nothing more than a bad period, and that she should just drink more water. These incidents made her feel dismissed and let down. Many others face similar challenges during the diagnostic process.
Pelvic floor physiotherapist Katie Kelly, who co-owns Reconnect Health, a multidisciplinary clinic in Moncton, New Brunswick, says that it can sometimes take four to 11 years to receive a diagnosis for endometriosis. Kelly says one reason for this is that the symptoms of endometriosis mimic other gynecological, gastrointestinal, and musculoskeletal problems, but there is also “a component of the embedded patriarchy in the medical system […] for women and others who are assigned female at birth.”
While Kelly has seen a positive shift in recent years, gender bias in medicine and research is still prevalent, and can make patients feel like their pain is minimized.
The treatment options
If you are experiencing the symptoms of endometriosis, the first step is to see a doctor and get a referral to a specialist. Tests to get a diagnosis include pelvic exams, ultrasounds, MRIs, and laparoscopic surgeries.
Treatment plans include pain medication, hormone treatment, ablation, or excision surgery to remove the endometriosis.
Paruag has stage four deep infiltrating endometriosis, so she has tried many of these options, including ablation and low-level laser therapy. It was only when she traveled to the UK to receive excision surgery that her symptoms vastly improved, changing her life completely.
In terms of pain management, Kelly says her role as a physiotherapist is in treating the changes the tissue makes to the surrounding neuromuscular tissue. While physiotherapy does not treat endometriosis directly, many methods can be used to help improve the muscles, tendons, ligaments, nerves, and connective tissues in the pelvis.
Pelvic floor physiotherapists like Kelly can be very useful in improving muscle function, which can help with the symptoms. They are experts at non-medical pain management, including stretches, breathing techniques, ice and heat, acupuncture, and electrical stimulation.
The mental health aspect is real
Going through the pain associated with endometriosis on top of trying to navigate the medical system can be especially difficult. Paruag says she started journaling from a young age, writing about her symptoms and frustrations. She also has found help through guided meditation and visualization. She sticks to a strict morning routine, makes sure to listen to her body, and engages in gentle movement.
Whatever your symptoms, it’s important to take care of your mind as well as your body.
How to advocate for yourself
As Kelly says, support starts with a good primary care practitioner. Writing down any questions and concerns in advance can help you prepare to see your doctor. Reaching out to other health professionals, like physiotherapists and acupuncturists, can also be useful.
Paruag says from her experience, engaging in light movement like yoga, eating nutrient-dense foods, and practicing mindfulness can have real positive impacts on symptoms. Trusting yourself to know your body best and asking for multiple opinions are ways to empower yourself and receive the care you need.
You’re not alone
As an advocate for those with endometriosis, Paruag finds her purpose in helping thousands of others who struggle with similar journeys. She is the founder of the Out of Country Excision Fund, which helps people worldwide receive surgeries like the one that changed her life.
Paruag knows firsthand how difficult it is to fight for yourself while experiencing so much pain, and says online support groups like Nancy’s Nook have helped her tremendously in both the emotional and practical elements of seeking help and finding treatment.
Regardless of where you’re at in your journey, and despite the work we need to do to improve care for folks with endometriosis, there is help to be had and people who understand.