As Jenny sat across from me words like brave, courageous, and inspiring crossed my mind. Tears welled in my eyes, and I felt compelled to share her story with others in the hopes that her bravery would inspire other individuals to find their strength and courage.
Endometriosis is an invisible illness that impacts 1 in 10 women. It is under-reported, misdiagnosed, and mistreated. For transgender and genderqueer individuals getting an appropriate diagnosis and treatment is even more challenging. “It is a disease which causes abnormal tissue to grow outside of the uterus and can affect other places in the body. It can cause painful periods, and if left untreated can cause infertility, ovarian cysts, bowel obstructions, and permanent damage to other affected organs. In Jenny’s case a ruptured ovarian cyst turned septic and almost cost her her life.
“I grew up thinking that this is what a period was supposed to feel like” she states. When she initially shared with her mother that her periods were extremely painful, her mother told her that hers were too. “This was normal”, my mother told me. This is normal, she thought as she doubled over in pain. It took years for her to gather the courage to even speak to a medical provider about what she was experiencing.She was met with the same suggestions of birth control and extra strength Tylenol by just about every doctor. When an ultrasound was eventually granted, the risks were unremarkable and so she never spoke of it again. Little did she know that endometriosis does not show up on imaging until it has become deeply infiltrated, creating ovarian cysts. She was pushed aside and made to believe that her feelings weren’t valid. It took a near death experience for her to be taken seriously. Why are women not being listened to, validated, and cared for in their experiences with pain? Why is endometriosis not being taken seriously?
What struck me about Jenny was her bravery in overcoming obstacles after this horrifying medical experience. Here are some signs that you may be suffering from endometriosis, how it may be impacting your life, and how you can overcome it.
You can find your own strength.
Signs and Symptoms:
-Pelvic pain that may worsen during your menstrual cycle
-Pain and cramping using the bathroom
The Impact of Endometriosis:
While women frequently feel pain at several points during the month, endometriosis typically worsens during your menstrual cycle. This pain can be anywhere from distracting to debilitating. The emotional impact remains daily. The invalidation of feeling not listened to by your medical providers is isolating. Being shunned by your family and friends who think you are overreacting with your pain, it is very common for women suffering from endometriosis to experience anxiety or depression. Furthermore, the struggle of infertility is deeply painful for many women who hope of having a family of their own one day. Perhaps your struggle with endometriosis makes it harder for you to keep a job. Or possibly like Jenny, your job may be bullying and ostracizing you due to the effects of endometriosis. This may look like not allowing you time off for doctors appointments or cruel statements about your use of a heating pad in the office.
What You Can Do About Endometriosis: Finding Your Strength
Speak your truth:
Through this journey, remaining true to yourself will help you overcome obstacles. Speak your truth. Share your pain with your medical providers, and with your family and friends. Hiding the reality of your struggles will only lead to mistreatment moving forward.
Endometriosis is something that is still largely misunderstood by the medical community. Many doctors are not aware of some of the latest research on endometriosis and may still be treating patients based off of misinformation. Educate yourself. Do your own research and figure out what feels right to you. Explore treatment options, and decide which treatment, if any, feels right to you. Consider your value system when considering and making choices. For example, if you want to have children soon a medication that might lower your fertility might not be the right treatment for you. Go prepared to your doctors appointments with questions. Look into finding an endometriosis specialist. Perhaps you might need to try a few doctors to find one who you feel you can trust with your endometriosis diagnosis and treatment. That is ok. You are your strongest advocate!
Create a network of trusted doctors:
Both physical and emotional support are important in addressing such an isolating disease. In Jenny’s case finding the right surgeons and pelvic floor therapist Zarina Vitebsky at ProTouch Physical Therapy, helped to empower her and fight this disease. But one of the areas she expressed missing the most was someone to talk to during this trauma. A good pelvic floor therapist will communicate directly with your mental health therapist upon request to find connections that are worsening your symptoms.
Support from other women who share in your experiences is invaluable. Perhaps they can share what has worked for them. For example, cutting out processed foods from your diet can help many women to have reduced symptoms and pain each month. Check Facebook for your local endometriosis support group, and lean on other women who get it!
Through the bravery of Jenny sharing her story with me, I hope to shed light on the experience of endometriosis. Stay tuned for a series of blogs on endometriosis related topics. If this sounds like you and after trying these tips you are still needing support, reaching out to a mental health therapist knowledgeable in endometriosis may help.