Endo, Hysto.

The self you leave behind is only a skin you have outgrown.

Don't grieve for it. Look to the wet, raw, unfinished self, the one you are becoming.

— Pat Schneider “Instructions for the Journey”

I am writing this for the thousands of women out there with this chronic debilitating disease.

I see you.

And know that for years you have sat in doctor’s offices and had hundreds of tests. And for a lot of the time, the doctors have said they can’t find anything wrong. When every day, every month you are crippled with pain. That when they finally do find something — because it has always been there — you weep with relief that someone finally believed you. You want them to say, “Yes, it is bad; yes, it is severe; yes, it is a wonder that you have been able to do as much as you have. You are not alone. You are 1 in 9.”

This interior world that is dark and painful, that is unseen to others because you are trying your best to get on in the world and prove that you can beat it. This monster that has literally stuck you together, obliterated, distorted and strangled your reproductive organs. At times you have never seen so much blood. You wonder if you are dying. Where having a period is a major event… and as you black out with the pain you hope to god, you are dying! This inner war, that prevents you from being well, from sharing yourself in the world, having children, being intimate with your partner… and when getting up each day is like walking through concrete.

You see, you have probably had it your whole life. From the moment you were born, it was already there — this chronic inflammation disease. You remember the flooding of your periods when you were young, doubling over with pain and doctors saying it was normal. Where finally it took six and a half hours the first time, they operated to exorcise these lesion-demons from your body.

You were told then that you would not have children naturally, if at all and you felt so ashamed by the disease. That perhaps you deserved it because only two years earlier you had terminated the one and only pregnancy you would ever have. In your adult life, you went on to experience daily: vertigo, dizziness, nausea, bloating, diarrhoea, back pain, leg pain, leg tremors, sciatica, anxiety, panic attacks, joint pain, headaches, anaemia, menorrhagia, fatigue and more fatigue. You lose time, you lose your mind, and you wonder what the **** is happening.

Endo. Sounds sweet right!?

Endometriosis — so insidious… like choke weed — where the endometrium cells in your uterus grow outside their natural home to adhere to the internal pelvic structures and become hard like rock. They grow on your ligaments, bowel, ureter, ovaries and fallopian tubes. These cells that are literally trying to escape from your body can be found in your lungs, liver and even shut down your kidneys.

You are embattled, at war with yourself and eventually at war with the world.

Your body is literally on fire in a pro-inflammatory environment that is in a vicious cycle. The nervous system is always on high alert. You try everything from anti-inflammatory diets, hormone treatments, Chinese medicine, naturopathy… you meditate, you do yoga and more yoga. You drink wine to self-medicate and pain killers are your best friend. You look away as friends have children. At times you have stood at the kitchen sink with a knife and thought ‘I could just cut it out. Go on!’

You become completely disconnected from yourself. You hate your body, this bloated constipated vehicle of flesh that maybe — if you’re lucky — has one week, a few days a month of relief from the symptoms.

The tentacles of endometriosis have finally rendered you emotionally and physically paralysed, you become absent from your relationship, family and friends and throw yourself into work, work, work to block out the pain and disappointment. And as you get older and spend thousands on fertility scans and assessments, your diagnosed hostile uterus has deeply embedded in you that you are a complete failure.

This is what you believe, you beautiful, talented, strong, clever, determined, amazingly strong human… that this is somehow your fault.

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On the 9th of June 2021 after twenty years of having endometriosis, I said goodbye to pretty much all my reproductive organs. I was first diagnosed with Endometriosis in 2001. I was luckier than some. The gynaecologist suspected it on only my second time in Emergency. I had my first Laparoscopic surgery on the 22nd of February 2001.

The resources and information about endometriosis back then were limited and not really talked about. It was certainly not on the agenda in Parliament. Women’s health issues were not given any value in the greater conversation. It was just another thing that women had to quietly suffer and maybe like me, feel ashamed about… this disease that had destroyed their insides.

You just had to get on, until for me, you just don’t.

The decision to have a hysterectomy was a difficult but necessary one, by the end of 2020 I had reached the absolute precipice. Even though the first surgery in 2001 had mitigated the blackout pain, I was still plagued by so many ongoing symptoms and problems. I had been holding down a once-in-a-lifetime job for the last five years, but with 12-hour days, a highly stressful environment and the job being intensely physical, I knew something had to change.

Most days I could hardly function. I would cry in the mornings and say, ‘I just can’t do this anymore’ and still drag myself to work. This had been my mantra for some years, as my husband watched on helplessly.

In the end, it was the extreme fatigue and the fact that my body had finally had enough of the war… the white flag had been raised in defeat. The doctors and surgeons, after more tests and scans, suspected deep infiltrating endometriosis, growing fibroids, cysts and adenomyosis. Being well into my 40s it was time for — what I hoped — would be some relief and a better quality of life.

What they found when they went back in, twenty years later, was “disgusting” (the actual quote from my surgeon). They could not see the bowel through the adhesions and tentacled structure. It was much worse than imagined.

So here I am nine weeks post-operatively… and I am not the same person.

I don’t regret it but honestly, I am not sure I can tell you yet if it has been a success because you are replacing one set of symptoms for another in the first weeks. However, there are these moments, slivers of a self I am becoming.

What I do know, is that having a hysterectomy is major surgery — and for bodies wired for pain, the excision of the endometriosis can make the recovery longer.

So, patience is key.

It is also critical to understand that no two recoveries are the same. I got a post-operative infection which put me back in the hospital — so be prepared to go slow like a snail. Recovery can be unexpected.

Most importantly don’t be hard on yourself. You won’t necessarily fulfil your dreams of writing a book during recovery… in fact reading at all may very well be too exhausting. Your tummy may swell like a balloon. You may lose or gain weight. There may be pain. It will be difficult to sleep. There will be so many strange sensations, but hey, you have endometriosis. You may have nightmares, night sweats, nausea and fatigue. Your already terrorised internal organs will be rehousing themselves’, so it is a big deal. And this is just speaking to the physical recovery.

But what is surprising is this — you; you beautiful talented, strong, clever, determined, amazingly strong human — are also recovering from years and years of chronic disease.

You have taken extreme action to rid yourself of this internal war that has held you under siege. And like Stockholm syndrome, you have become very well acquainted with it. To the point where you think it may have defined you… or even given you purpose.

This requires perhaps the greatest compassion and realisation — that you are not your disease or its consequences. That you will need time to rewire your over-cooked nervous system to welcome some ordinary days without pain. That you are not less than, and importantly that it was not your fault.

So, go now.

Take your flesh and bones, your unbelievably brilliant mind that has weathered so much. Look in the mirror and see into the deep lake of your strength and with great love say: “you are amazing — dear one — to be holding all this with such grace and resilience. You are not broken.”

By Sam

9 August 2021

Procedure:

Total laparoscopic hysterectomy + excision of endometriosis + adhesiolysis +bilateral ureterolysis + left salpingo-ooherectpmy.

Diagnosis:

Severe Endometriosis

Endometriosis of uterine serosa and left ovary,

Endometriosis within the Pouch of Douglas

Ovarian serous cystadenoma,

Adenomyosis,

Intermural lesions,

Benign Cervix, Benign Fallopian Tubes