The 5 Stages of Endometriosis We Shouldn't Be Ashamed to Talk About
Uterus. There, I said it! Uterus! Periods. Ovaries. Fallopian Tubes. Bleeding. Tampon. Rectum. Hormones. Bladder. Cervix. Menstruation. Vagina. Discharge. Pelvis. Pads. Endometriosis.
For me, these “uncomfortable” words are normal conversation starters. Conversations that cost hundreds of dollars and occur during painful, exposing and demoralizing “internal examinations” that make a pap smear feel like a stroll in the park. Conversations with a plethora of in-depth questions about the most intimate details of my life – sex, bowel movements, urination, contraception, pregnancy, pre-menstrual syndrome, weight, fractured relationships and mental illness… Oh, did I mention they’re with complete strangers?
Honestly, I don’t fully understand why I have found conversations about religion easier than talking about a disease that affects the reproductive organs of one in 10 females worldwide. I think it may have less to do with endometriosis and more to do with what’s associated with it. Most people don’t know how to react during conversations about chronic illness. If you compound that with chronic pain, emotional suffering, periods, sex, cervixes or uteri, I guess it makes sense why it’s awkward. Maybe it’s also because talking about your vagina is so personal — I mean, it’s a “private part” after all. The feminist in me wonders if it has something to do with living in a historically male-dominated society. In the end, it’s just not seen as “kosher,” but if we stay silent, society remains ignorant.
Here are the five stages I went through with endometriosis.
Stage 1: Faking It
Courtesy of polycystic ovarian syndrome (PCOS), acne sprouted when I was 11 and once puberty kicked in, my face resembled a pepperoni pizza. At 15 I started taking Roaccutane — a potent pharmaceutical to treat cystic acne. Roaccutane is believed to cause birth defects, so the dermatologist refused to prescribe it unless I also took the birth control pill (which never made sense because I wasn’t sexually active).
Within a few months, chronic abdominal pain started. The result: X-rays, ultrasounds, specialists, painkillers, frequent school absences and a colonoscopy. Diagnosis: psycho-sematic pain. It was all in my head. Treatment: psychology and cease taking Roaccutane. I was in pain all the time and there was no physiological cause. I stopped taking both medications and a few months later the pain resolved, but ovulation and menstruation had become hell. No one suspected a gynecological condition or that “the pill” was the culprit. Rumor was that I was “faking it” and it wasn’t long before I started to spiral into a dark, damp hole I couldn’t escape from.
Stage 2: Diagnostic Conundrum
Fast-forward five years: The pain returned after four months of hormonal contraception. Again: scans, ultrasounds, blood tests, specialists, painkillers, weight gain, isolation. Again: No answers. I was a “diagnostic conundrum.’” But I ended the silence. Something was wrong and I knew I wasn’t faking it.
Stage 3: Diagnosis
An ovarian cyst eventually showed up on an ultrasound, so I booked in for a cystectomy. After six months on the surgical waiting list the cyst resolved itself. Instead, I had a diagnostic laparoscopy where the gynecologist found endometriosis, a tissue similar to the lining of the uterus found outside the womb. Turns out I also have PCOS. Unfortunately, treatment did not stop the pain, but I had a name! Oh, the relief and closure.
A diagnosis meant there were legitimate, medical reasons for the constant pain, chronic fatigue, cramping, nausea and bloating. I finally understood why I had persistent acne, headaches, heavy periods, skin tags, difficulty losing weight, erratic mood swings, a dodgy immune system and pain during urination, bowel movements and sex. I was so glad I hadn’t been silent. Something was wrong and now I had proof.
Stage 4: Grief
What followed was a three-year process of watching all I deeply valued in this world fall away. I ceased being an independent adult. I was 24, divorced, obese, unemployed, suicidal, incapable of doing housework, eating frozen meals, dropping and breaking my valuables, constantly losing stuff and sharing a bedroom with my mother. I felt like a dependent child, living in a dark, damp pit with no exit plan. I had such regular appointments, my general practitioner became like a best friend.
By the world’s standards I felt like I was a complete failure. I spent five years grieving the death of my dreams, goals and hopes for my life because there is no cure for endometriosis.
Stage 5: Acceptance and Healing
I never stopped fighting for my health. After 10 years of symptoms and five-and-a-half years of non-stop pain, I eventually reduced the severity of my symptoms. Slowly, day by day I came to a place of acceptance.
I gave myself permission to grieve the loss of life as I knew it. Allowing myself to mourn the loss of my marriage, career, body and independence gave me the emotional space needed to heal and move on with this my new life.
I spent thousands of dollars in conventional and alternative specialist fees, I had three excision surgeries in the space of three years and two were with well-renowned endometriosis specialists — but I was still sick. Eventually, I started to give myself credit. I never gave up, even when I wanted to. I tried anything and everything and never stopped fighting for the best medical care I could afford. I’d done all I could and that had to be enough.
I formed emotional and medical support teams; my friends, family, a peer support group called Grow, choir, church, general practitioner, gynecologist, osteopath, mental health nurse and pain specialists supported me all in different ways. Individually, their help had limited success, but together I had a large team of various people to support me emotionally, physically, socially and spiritually.
I started participating in the endometriosis sisterhood, mostly online. Engaging in various Facebook groups and online forums helped me connect with other endo suffers. I wasn’t alone, I could seek advice from people who understood and find a sense of purpose in encouraging and educating others. I also participated in a documentary called “Endo & Us” which was cathartic and is previewing alongside the Australian showings of “Endo What?”
I began engaging with endometriosis creatively. I wrote and recorded a song, started painting and writing blogs and poems — again. It helped me process the last 10 years. It helped me express it, so others could begin to understand. It inspired me to share my story so other women may not have to suffer alone in silence.
I had 100 percent dedication to an intensive chronic pain program at my local hospital. It was three weeks of increasing my ability to exercise, function in society and accepting the pain. How? Stretching three times a day, learning about medication, sleep hygiene and the physiology of pain, increasing my exercise, sitting and standing tolerances, thought management, practicing desensitization, reducing the pain medication, and support from building relationships with other pain suffers.
I found faith and hope. For me, it was trusting in a God who created me, loves me and will give me a perfectly healthy body one day. I also began to see that my pain and suffering was not in vain. Somehow I was encouraging and supporting others — because I was in pain, they weren’t alone in their suffering.
I was finally “OK.”
Acceptance led to physical, spiritual and emotional healing. I can now do basic housework, cook, socialize and exercize. I have a part-time job, am studying again, lost weight and travelled. I can do these things despite the fact I still have constant pain and regular flare-ups.
If you have endo, speak up and don’t be ashamed. If you have symptoms, speak up and don’t be ashamed. If you never speak up and advocate for yourself, you will never learn to manage the symptoms.
Go on! Say it, just once. I dare you. “Yoo-ter-uhs.”
See, it’s not that scary.
Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.
Follow this journey on Breaking Stigma.
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