Endometriosis: More than a disease


What does it mean to be 1 in 10?

March is Endometriosis Awareness Month. To date, it is estimated that 1 in 10 people who experience a period has endometriosis.

What is endometriosis?

Endometriosis occurs when cells in the lining of the uterus grow outside the uterus – on the ovaries, fallopian tubes, bladder, bowel and in rare cases, the liver, lungs and brain. Each menstrual cycle these cells respond in the same way as those in the uterus, they break down and bleed, but have no way of exiting the body. They just remain, ever present, reacting to hormonal changes and stress sometimes every day, other times every few days. Common symptoms of the disease include painful periods, chronic pelvic and back pain, painful sex, infertility, gastrocnemii issues, the list goes on. No one’s situation is the same. Some living with the disease have no symptoms, whereas others experience so many.

Endometriosis is a complex disease and even more complex to diagnose and treat. There is no cure, only minimal understanding alongside of hormones, pain killers and surgery to treat symptoms which often result in unpleasant side effects.

But is it complex to diagnose?

If a patient gets to the point of laparoscopy surgery (currently the only definitive way to diagnose endometriosis), it isn’t difficult to diagnose. What is difficult is convincing someone that your pain and symptoms are bad enough to warrant the exploratory surgery in the first place.

Grief and Acceptance

To be honest, I delayed writing this post. As Diva’s resident endometriosis expert in the office, having me write this post makes logical sense. But, as someone who lives with endometriosis, it is hard to revisit the reality of the disease through the written word. As a writer I believe words can inspire, challenge and change perspectives.

What they don’t tell you when diagnosed is just how much your life will change – how you will essentially lose the body you once knew and the degree of capabilities you once had. For years I walked around with stage four bi-lateral endometriosis in denial. I pushed myself harder than I ever did in my life. There was no pause. No evaluation on what areas of my life I needed to change. Slowly, though, I began to lose myself and my ability to live a life I loved.

Just last year, our office ordered Abby Norman’s Ask Me About My Uterus, and I was immediately curious. What unfolded during that reading experience was an awareness and acceptance around endometriosis that I never knew before in my entire journey with the disease. At times I needed to put the book down as the words I was reading were playing out in my life in that exact moment. I laughed. I cried. And then cried some more. Up until this point, I spoke about the disease as something apart from me. I didn’t want to acknowledge it as being part of who I was as a person.

What should accompany a diagnosis of any chronic disease is a handbook for how to work through the five stages of grief: denial, anger, bargaining, depression and acceptance. You essentially need to grieve the body you once knew. Depending on the day I sometimes floated through the stages. I like to believe I’ve accepted my body as a diseased body, but those first four stages are ones I visit often.

Maybe a little too often.

Denial and anger help you identify how you truly feel. Bargaining and depression are comforting in a dangerous sort of way. But acceptance, that stage is most frightening. I don’t always want to accept my limitations. I don’t always love my diseased body. I often wish it could do more. Living in acceptance means living a life that is less-than what I want.

Support is Everything

I saw an Instagram post that read: “The average age of endometriosis diagnosis is 27.” I was 28. While I started seeing doctors at 19, my symptoms were brushed aside as common period symptoms. By 25 I had given up on searching for support. However, as time went on my symptoms started getting more intense, and common. The symptoms of endometriosis started affecting me on non-period days, sometimes days in a row or for weeks. I went back to my doctor and requested another referral. Referral after referral came and went until I finally found a doctor who recognized the severity of my symptoms. Unfortunately, by that point, the disease was left untreated for so long that I was clocked in at stage 4 bilateral. Where one doctor told me I was difficult, another wondered how I had gone on for so long without support.

Thankfully studies like the ROSE study and the work of NextGen Jane are trying to find solutions to diagnose without surgery. While surgery may still be a treatment option after diagnosis, the wait time of ten years will be significantly reduced as a result of these diagnostic innovations.

Within the endometriosis support community patients are often referred to as Endo Warriors. I guess we are brave and experienced fighters against this awful disease. While I see myself as a warrior, I too often feel that I am warring against myself. Each day is a battle – physically, mentally and emotionally. Sometimes I fight against the disease, other times against my own stubborn will to want to do more. Sometimes I lose the battle and eat that slice of gluten and dairy rich pizza or stay out past ten with friends only to experience a flare up the next day. Often, it’s the build-up of battling the little things that lead to breakdown, like wearing pants. It’s a struggle for many of us due to surgery scars and bloating, but some days I try, and last until about 2 pm before I need to change. I don’t say these things to minimize the severity of the disease, I say them because life is in the small details and unfortunately, so is endometriosis.

As I write this post, I am ready to get to know this new body, new way of life that has come my way as a result of endometriosis. But tomorrow, I may be back in denial.

If you or someone you know has endometriosis encourage them to talk to someone regularly and to find a supportive community of people who understand. But most of all, start loving who they are today, the new them, so they too can love themselves.

Helpful Resources:
https://www.abbynormanwriter.com/

https://endometriosisnetwork.com/

https://www.endofound.org/

https://themighty.com/

https://www.feinsteininstitute.org/rose-research-outsmarts-endometriosis/

https://www.nextgenjane.com/

http://citizenendo.org/

https://www.endometriosis-uk.org/

https://www.endometriosisaustralia.org/

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