Alexandra is a fellow blogger out of Brisbane, Australia. Today she share’s her Endometriosis journey with us. She was diagnosed when she was 20, and now five years later here she goes, starting us out with a *bang*:
Alexandra’s Journey: “Uterus.” There, I said it! Uterus! Periods. Ovaries. Fallopian Tubes. Bleeding. Tampon. Rectum. Hormones. Bladder. Cervix. Menstruation. Vagina. Discharge. Pelvis. Pads. Endometriosis. Awkward.
Use of the above words are often avoided. Slipping them into a conversation causes tension and awkwardness. I do not intend to be vulgar. I do not want to be rude. But these words simply refer to elements of biology and anatomy. Yet, we stay silent and others remain ignorant. A conversation about ‘religion,’ God, Jesus and faith is (usually) easier than talking about a disease that affects 10% of females worldwide. If I don’t help end the silence, I will never see an end or cure. These uncomfortable words have all been part of many conversations I’ve had; conversations that cost me hundreds of dollars. Conversations that occur during painful, vulnerable, demoralizing, awkward and uncomfortable ‘internal examinations’ (that make a pap-smear like a walk in the park). Next, a plethora of in-depth questions about the most intimate details of my life – sex, bowel movements, stools, contraception, pregnancy, urination, PMS, trauma, body weight, fractured relationships and a mood disorder… with complete strangers. Repeat, over and over again.
This process started ten years ago, and I’ve now had daily pain for five years and two months.
I first got acne when I was 11 years old, courtesy of PCOS, then as puberty kicked in, my face looked like a pepperoni pizza. By the time I was 15, I had started taking Roaccutane – a potent pharmaceutical to treat cystic acne. If a female falls pregnant while taking it, guaranteed the child would be deformed. So the dermatologist refused to prescribe it without putting me on the pill (which never made sense; I wasn’t sexually active).
My Five Stages of Endo:
1. Faking it Within a few months, the chronic abdominal pain started. The result: x-rays, ultrasounds, specialists, painkillers, frequent school absences, a colonoscopy and never finishing the course of Roaccutane. The diagnosis: psycho-sematic pain. It was all in my head. Prognosis: psychology. The word at school was that I was faking it – maybe it was so I could miss school or to get attention? It didn’t take long before I started to spiral into a dark, damp hole I couldn’t escape. I was in pain all the time and there was no visible cause. I was a perfectionist falling behind in my schoolwork and an extrovert isolated from most of my peers. No one suspected that ‘the pill’ was the culprit.
2. Diagnostic Conundrum Fast-forward 5 years and the pain returned less than three weeks after my wedding and four months after starting hormonal contraception. Again; scans, ultrasounds, specialists, painkillers, dramatic weight gain, isolation, three months sick-leave and deferring my third semester at college. Again: no diagnosis. I was a ‘diagnostic conundrum.’
3. Diagnosis After an ovarian cyst eventually showed up on an ultrasound; I booked in for a cystectomy, but the cyst resolved itself. After six months on the waiting list, I had a diagnostic laparoscopy (keyhole surgery of the pelvis) where the gyno found endometriosis, a tissue similar to the lining of the uterus found outside the uterus. Not long after that, a naturopath led me to a diagnosis of PCOS. Unfortunately, surgical removal of the endo and diagnosis did not stop the pain… However a name, a diagnosis, meant I wasn’t crazy. There was a reason I was in constant pain that was compounded with chronic fatigue, cervical cramping, nausea, bloating and painful urination, bowel movements and sex. I now understood why I had persistent acne, headaches, heavy periods, skin tags, great difficulty losing weight, erratic mood swings and a dodgy immune system.
4. Grief What followed was a three-year process of watching the things I deeply valued in this world fall away. I lost control of body; my mind was overworked with pain signals and dulled with painkillers. The depression worsened. I spent thousands of dollars on specialists and alternate therapies. I had to leave my amazing job and eventually my marriage completely dissolved. I left the life I had built – friends, career, family – to share a bed with my mum (who I adore). I was 24, divorced, obese, unemployed, severely depressed, incapable of doing my laundry, living off frozen meals, dropping and breaking everything of monetary value, constantly losing items I used daily and I lived in the same bedroom as my mum. Other than my family (who I was living with), the person I spent the most time with was my GP. By the world’s standards, I was a complete failure. According to Darwin, I should have died years ago. I spent five years grieving the death of my dreams, goals, hopes and desires because there is no cure. If Jesus wasn’t going to return anytime soon, I hoped maybe a brown snake would bite me, or a funnel web (I’m not fussy). I was living in a dark, damp pit and couldn’t come up with an exit plan.
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, socialise and exercise. I have a part-time job, am studying again, lost weight and traveled. I can do these things despite the fact I still have constant pain and regular flare-ups. So, here I am. My uterus hurts, my ovaries have cysts, my cervix cramps and my period is almost unbearable. Urinating is painful, but so is a full bladder. I’ve had a tennis ball size of endo removed from between my rectum and cervix.
See, it’s not that horrible to read.
Words of Advice for Us: 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…. because if we stay silent and society continues to remain ignorant. Go on! Say it, just once. I dare you. “Yoo-ter-uhs.” See, it’s not that scary.
The Last Word: Through all these stages, I’ve always been extremely grateful to have such a wonderful and supportive family, both earthly and spiritual. God has sustained, challenged and strengthened me. I praise Him every day for giving me His Spirit, Jesus sacrifice and Gods love. I give thanks for some tangible hope as I eagerly await the perfect and restored body I’ll have in the New Creation.
I want to send a special Thank You out to Alexandra for being brave enough to share her personal story, struggle, and victories with us today. Such a Warrior and an inspiration! You are a beautiful, brave, and strong woman. Thank you!!!
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.