5 Stages of Endo*

                                                                             *Not scientifically proven. 

‘Uterus.’ There, I said it! Uterus! Periods. Ovaries. Fallopian Tubes. Bleeding. Tampon. Rectum. Hormones. Bladder. Cervix. Menstruation. Vagina. Discharge. Pelvis. Pads. Endometriosis. 

Awkward.  

These words are often avoided. They’re not ‘kosher’ and they make people cringe. Slipping them into a conversation causes tension and awkward-turtles, but if I keep my mouth shut and stay silent, society remains ignorant.

For me, these ‘uncomfortable’ words are normal topics of conversation. Conversations that cost hundreds of dollars and occur during painful, exposing, vulnerable, demoralising and uncomfortable ‘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, PMS, weight, fractured relationships and mental illness… Oh, did I mention these ‘chats’ are with complete strangers? Unfortunately, when you’re chronically ill, second, third and even twelfth opinions are often necessary.

Ironically, I have found conversations about Jesus, faith, religion and politics are easier than talking about a disease that affects the reproductive organs of 1 in 10 females worldwide.

Stage 1: Faking it 

Courtesy of 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. Falling pregnant while taking Roaccutane guarantees a deformed foetus, so the dermatologist refused to prescribe it unless I also took the pill (which never made sense as I wasn’t sexually active).

Within a few months, the 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 a perfectionist with anxiety falling behind at school and an extrovert isolated from the world. Rumour was that Alex was “faking it” and it wasn’t 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 physiological cause. I never finished the course of Roaccutane and I stopped taking the pill. A few months later the pain resolved, but ovulation and menstruation had became hell. No one suspected a gynaecological condition or that ‘the pill’ was the culprit.

Stage 2: Diagnostic Conundrum

Fast-forward 5 years: the pain returned less than three months after my wedding (and four months of hormonal contraception). I took over three months sick leave and deferred my third semester at college. Again: scans, ultrasounds, blood tests, specialists, painkillers, weight gain, isolation. Again: no answers. I was a ‘diagnostic conundrum.’  

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 (keyhole surgery of the pelvis) where the gyno 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 I wasn’t crazy! 

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.

Stage 4: Grief

What followed was a three-year process of watching all I deeply valued in this world fall away. I lost control of body; my nervous system was overworked and my mind was dulled with painkillers. The depression worsened and my financial security vanished. I had to leave my amazing job and eventually my marriage completely dissolved. I left the life I had built in the city to return to my hometown, move into my Aunt’s granny flat and share a bed with my mum. (I actually have no idea how I would have survived without such an amazing family!)

I ceased being an independent adult. I was 24, divorced, obese, unemployed, severely depressed, unable to exercise or even stand for more than a few minutes, incapable of doing my own laundry (and most other housework), living on frozen meals, dropping and breaking my valuables, constantly losing stuff and sharing a bedroom with my mother. I was like a dependant child, living in a dark, damp pit with no exit plan. I had such regular appointment, my GP became like a best friend.

By society’s standards I was a complete failure, Darwinism says I should have died years ago. I spent five years grieving the death of my dreams, goals and hopes I had for my life because there is no cure for endometriosis

Stage 5: Acceptance and Healing

I never stopped fighting for my health. After ten years of symptoms and five and a half years of non-stop pain, by the grace of God, the severity of my symptoms decreased. 

It took:

  • permission and space to grieve,
  • three surgeries,
  • trialling Visanne,
  • thousands of dollars in (conventional and alternative) specialist fee’s,
  • a willingness and determination to try almost any treatment options
  • improving my mental health,
  • forming emotional and medical support teams,
  • being active in the endometriosis community and sisterhood, 
  • taking the opportunity to participate in the documentary “Endo & Us,”
  • engaging with endometriosis creatively by expressing myself through photography, art, music and writing (click here to hear a song I wrote),
  • 100% dedication to an intensive chronic pain program,
  • taking the initiative,ignoring ignorance, never giving up,
  • and finding faith, hope and acceptance to finally be ‘okay.’

Sure, I still feel uncomfortable, bloated and nauseous. I cramp regularly and remain tired and in pain 99% of the time. But my flare-ups are shorter, less intense and not as frequent because I no longer react emotionally to the symptoms. Acceptance has led to spiritual, emotional and physical healing. I can now do basic housework, cook, socialise and exercise. I have a fulfilling part-time job, started losing weight, travelled, stood in the middle of a mosh pit and started my Masters degree.

I smile and laugh now because through the pain, the fight, the sleepless nights, the isolation and rejection, the lies, the heartbreak and the suffering my faith has developed. God never ceases to sustain, challenge and strengthen me as I eagerly wait for my restored, New Creation body that will no longer be plagued by endometriosis, PCOS or depression. Chronic pain has helped me find tangible hope and now my faith is solely in God, His holy and never-changing character and His perfect plan.
It saddens me that ten years from the onset of symptoms to a diagnosis and recovery is common but it will only change when we ‘end the silence.’

So for the sake of 178 million women around the world, I will fight, advocate and educate for increases awareness, research and a cure. I will continue to engage in awkward conversations on behalf of other adolescent girls and adult women who are being told the same thing in 2016 – “there is nothing wrong with you. It’s all in your head.”

So, this is me – Alex. I have endometriosis, it doesn’t define me, but it has changed me and taught me to be bold. I had endo removed from my rectum and cervix. My uterus aches, my ovaries have cysts, my cervix cramps, urinating hurts and my period sucks.

Now your turn – go on! Say it, just once. I dare you. ‘yoo-ter-uhs’…

…see, it’s not that scary 😉

Side Note: Through all these stages, I’ve always been extremely grateful to have such a wonderful and supportive family, both earthly and spiritual. I praise God every day for Jesus sacrifice, the Fathers love and the Holy Spirit’s power to transform my heart and heal my body. I give thanks for some tangible hope as I eagerly await the perfect and restored body I’ll have in the New Creation. 

Endo & Us: Testing 1

When you finally get to see the docco you were part of and get to meet Endo Ambassador @melgreigradio at the #endomarchaust! Thank you #endoaustralia for hosting! #1in10 #allthefeels #endo #endthesilence #endometriosis (at Mercure Gold Coast Resort)

I’ll Endure Until I’m Cured

This is step six in the grow program: I’ll endure until I’m cured.

I will persevere and I will fight. When I feel I can no longer withstand the discomfort and pain I can turn to my sisters to give me strength until I can see a glimpse of hope again.

I can hold onto God’s promise that says one day I will be healed completely. I will have a beautiful, disease free body. So, even if there may be no cure (for me: endo, PCOS or depression) in my lifetime, I know one day I will be completely cured from all that hurts me today.

18 Months

When I returned to the Northern Rivers I told myself I wanted to be well enough to return to work within 12-18 months. It seemed impossible, but I’ve always been a goal setter.

When I returned to the Northern Rivers my life was falling apart. The chronic pain had rendered me useless. I thought my life was going to be the endless pain cycle and an unproductive life… Which I came to accept.

When I returned to the Northern Rivers I thought I had lost everything – my health, my job, my husband, my independence, my ability to process information effectively and the list could go on. I was broken, rejected and hopeless.

The last 18 months have been horrible. They’ve also been filled with healing, joy, peace and love.

By the grace of God I found my purpose and worth in being His child, not in my abilities and work. I found healing from 15 years of mental illness. By the grace of God I can now manage pain I’ve had for over 4 & ½ years and becoming healthier day by day. By the grace of God I know I am loved and valued despite my short comings (and there are plenty). I’ve been able to continue to minister to Children.

By the grace of God I’ll be moving to Brisbane to return to vocational ministry and moving in with one of my dearest friends (also known as my heterosexual life partner).

By the grace of God I lost everything that was important to me so I could be reminded of how blessed I am that the perfect Shepherd found and rescued me. I have a greater understanding of the New Creation and suffering. I’ve learnt to come before my creator, hopeless and able to rely on Him.

I am so grateful for my wonderful friends and family. I am thankful for the illnesses that taught me resilience and gave me a drive to persevere. I am thankful for the pain clinic that taught me how to manage my illnesses while gaining control back over my body.

I am grateful for the grace of God that allowed for healing since returning to the Northern Rivers, 18 months ago.

“Pain Poem”

Pain;
feeling trapped
stuck      
lost
helpless
completely hopless
trapped.

 My eyes open,
I feel the ache
and when they close,
I’ve had no break.
It takes control, I try to fight
but the exhaustion , with its might
     brings me down
                        again
                        again
                        again
                         and
                        again

 …but I’ll try to overcome
but I won’t let it win

I’ll take courage and I’ll accept
these will be my first steps
as I do my best to learn
and my old life,
                        no longer mourned.

So, this is what I’ll do
relax and meditate,
pacing while I exercise.
I’ll stretch my muscles and my mind –
with courage
                  not fear
                              intertwined.
So, amongst the pain and struggle,
thankful I’ll still be
for the grace and endless mercies
my Lord has given me.

And as I wander slowly
through a world tainted by sin,
I’m now hopeful for what is to come:
the perfect healing heaven brings.

                                                                                    November 2013

Who am I?

I feel like I’ve lost the essence of who I am.

Friday night I met a gorgeous, funny and exuberant lady. Her energy was contagious. She reminded of my pre-endo me.

I don’t know if it’s the pain or the medications (probably both) but I feel like I’m not the Alex I used to be. 

I used to run around the school grounds in order to accomplish my weekly tasks – I was a member of many, many groups. I used to be a social butterfly. I used to love going out. I used to love trying new things. I used to love theme parks and walking and meeting new people. I juggled multiple jobs whilst studying full time.

Now, I sit in a chair and hope someone will come and talk to me. I feel like I’ve got nothing exciting to talk about – I usually end up bring the mood down. The thought of walking around a theme park makes my uterus cringe. I desire to go new places and try new things, but the energy it takes makes it almost not worth it. I have left my job and about to study part time.

I don’t laugh as much. My “jokes” don’t make people laugh any more, but make them seriously worried about my mental health, “is she serious?” Well, at least my dark humour is funny to me, right?

I have so many dreams that are left untouched and as I get older and as each treatment fails, they become further out of sight. When I try new things, I am now more likely to fail than succeed.

This seems depressive – but I feel like a different person now and I actually miss the old Alex and I’m sure those who know and love me do too.