‘Felt like I had an alien growing inside me’

By | February 3, 2019

When Annique Fabien was only 17 years old, she discovered an ‘alien’ growing inside her body.

In her ovary was a dermoid cyst — a saclike growth made up of brains cells, liver particles, hair, teeth, and bone fragments.

It was the removal of this cyst that sparked a new life for Annique, one that has been clouded with misdiagnosis, gaslighting, and the distinct feeling that sometimes a woman’s intuition can mean so much more than a medical degree.

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Time and time again we hear that when it comes to reproductive health, doctors are quick to dismiss or misconstrue. And perhaps no story speaks to this more than the horrifying medical journey of 37-year-old Annique.

“They look at you like you’re insane,” the mother of three told whimn.com.au. “It’s distinctly a problem that women face, that even when you’re speaking to medical professionals, everything that’s happening to you is put down to stress.”

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Annique has had 11 surgeries on her ovaries since she was a teenager. She’s been diagnosed with Adenomyosis and auto-immune Confusion, in and among a line-up of misdiagnoses. She’s had ultrasounds and iron transfusions, a contraceptive Tubal ligation and a hysterectomy.

But Annique believes that her journey reached its tipping point when, after having her left ovary partly removed at 19, her right ovary was then entirely taken out in her thirties — this was the medical moment that she feels catalysed all of the awful and unprecedented things that have happened to her body since.

After experiencing symptoms of Ovarian Cancer, Annique’s doctors only course of action was to remove her right ovary. “I was not told to get a second opinion. I was told this is what I needed to do, there is no other option.”

So Annique went through with the surgery and had her right ovary entirely removed.

But this did not solve the problem. In fact, it was not until after the drastic surgery that she began to experience a realm of new and frightening medical problems.

“I started to notice bleeding, and more bleeding, and more bleeding … I basically wore a pad for six weeks at a time, and I was changing them three-four times an hour.”

“I was diagnosed at that point with Adenomyosis. I was told to have a hysterectomy or bleed out until menopause.”

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While Annique’s doctors were quick to link her problems with any other lifestyle factor, like stress and anxiety, her intuition was speaking to her very clearly — and it was telling her that at the eye of her most recent medical storm was that major surgery.

“I wondered, ‘was it worth it? Should I have actually left that ovary in there?’ Have I actually done more harm now by removing that ovary and creating such a shock to my system?

“It was an emotional rollercoaster, I thought ‘I’ve been through ten years of hell, this was meant to be the light at the end of the tunnel.”

So when Annique’s health continued to deteriorate in troubling and unprecedented ways, she was more than disappointed, she was angry.

Every person with a female reproductive system knows what it feels like to experience a cramp — a sharp, sometimes debilitating pain that feels like a knife twisting in your gut.

On the inside, it feels incapacitating. But on the outside, we simply look ‘upset’. Inside our bodies ticks a complex system that can never be truly understood by only looking from the outside in.

This is why it was the sudden and rapid loss of her hair that truly tipped Annique over the edge.

She recounts the first moment she felt her hair falling from her scalp. She was in the shower eight months after the removal of her ovary. Suddenly she felt “clumps and clumps” of hair cascading through her fingers, falling to the floor and clogging the drain.

“I couldn’t contain my emotions when that started to happen. I hopped out of the shower and started to brush my hair and saw it all pouring like a waterfall into the sink. I started to scream, I was crying, I was shaking. I threw up.

“That was more of a shock to me more than anything else, because it’s such a real thing — its right there in front of you to see. Whereas I don’t know what’s happening to me internally, not even an ultrasound can tell me that, but I can certainly see what’s happening on the surface.”

It was the visibility of the hair loss that changed everything for Annique. No longer were her symptoms undetectable and at the behest of a doctor who could insist they did not exist. Something very real and very obvious was happening to her body.

“My kids would walk in and they would see me shaking. They would tell me, ‘It’s okay mum, it’s only a little bit’, even though you could see the look of horror on their face.”

For Annique’s two young sons, watching their mother lose her hair was confusing. But for her nine year old daughter, Maddy, it was a confronting and world-altering insight into her mum’s health struggles.

Now when Annique brushes Maddy’s hair, she quickly whips away any breakage left in the brush before her daughter can see it. Because Annique knows that if Maddy sees that lost hair, knowing what has happened to her mum, her little daughter wouldn’t know how to cope.

Annique has also recently tested positive to an auto-immune disease for the first time, and at only 37 years old, is experiencing ‘brain fog’.

“I walk into a room and think ‘what am I doing here?’ And I know it’s not from stress or doing too many things at once, having too many tabs open on my brain … I’m actually forgetting really important things. Even memories of my children.”

The words, ‘I know it’s not from stress’ came up over and over again in my conversation with Annique — giving me the clear impression that these are the words she has been forced to chant daily.

Despite her hair falling out, her memory loss, her complicated and exhaustive medical history; all she feels she hears from her doctors is, ‘it’s probably just stress.’

“You look at them, you beg them for help and answers, and they look back at you like ‘well it’s no wonder you’re losing your hair, look how tense you are. Your hair looks fine to me, you haven’t got any bald spots …”

It’s gaslighting. A woman standing in front of her doctor, begging them for help, only to be told she’s making up her symptoms or all that she needs is a rest.

“I just want to say no, no, stop right there. It is not my busy lifestyle that is making me sick.

“If that were true, every female, or single mother, or working mother, or mother would be sick! It is so condescending.”

There is an undeniable stigma that surrounds reproductive health. Some are lucky to have passionate, empathetic, and most importantly, informed medical professionals looking after them. But countless women have reached out to whimn.com.au to tell us their own stories of knowing there was something wrong in their bodies, and having doctors either dismiss their symptoms or tell them there is not enough existing research.

Women are not hysterical, they’re intuitive.

“My instincts are very very strong,” said Annique. “And my gut is a very dominant organ in my body — it’s one of the only ones I feel I have left. It’s doing all this extra work to tell my brain that something is very wrong inside my body, and it can’t cope.”

I asked Annique what some of her coping strategies are, to which she jokingly replied “wine.” More seriously though, she credits the value of the support networks in her life. Namely the small team of medical professionals she has finally found who work rigorously to treat her, and support groups on social media.

Annique has recently joined an online community of women from all around the world who are experiencing very similar health problems to her own. She tells me they are instrumental in validating and supporting one another.

“I only have to glimpse at my online support groups to realise how many women are going through something like this. Without those real life people in these groups, I probably would have thought I was going crazy.

“Had I been part of these support groups five years ago, I don’t think I would have had my ovary removed.”

However, Annique’s experience with these groups has not been entirely positive. As rewarding as it has been to find other women to share her journey, she also shares their heartbreak.

“A lot of the girls in my group are very suicidal. And it’s too much pressure for the administrators to take on that extra, not burden, but pressure. Pressure and responsibility to ensure that those girls seek help or don’t do anything silly overnight because they can’t handle what is happening to their bodies.

“I have to leave the group sometimes, because it’s so hard for me to read. I just want to jump into the screen and hug everyone and tell them we’re going to get through this.”

These groups go to great efforts to undo the damage done by gaslighting medical professionals. But Annique feels that it is the lack of any trained medical expertise that is only making the problem worse.

She feels that while shared experience is important, second-hand medical information can be harmful. It also places a responsibility upon the shoulders of certain women who, like Annique, have been fortunate enough to find trustworthy advice — she feels like it is up to these women to pass everything on to that online community.

While empathetic and eager medical professionals have been few and far between during Annique’s health troubles, those she has found are incredibly appreciated. Like the team at her local Amcal Pharmacy at Salamander Bay, which includes a pharmacist who is actively training in hormone imbalances and pointed her towards a specialist GP; who after years of dealing with difficult doctors and bad advice, Annique was pleased to learn is based in her hometown of Nelson’s Bay.

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Or the immunologist, who Annique describes as “extremely thorough,” with a mind-body-soul approach to treating Annique — something that she is so grateful for after years of drastic ‘last resort’ surgeries and misguided solutions.

Annique’s journey has been exceptional, unique, and extraordinarily difficult. But it does reflect the experience so many women have dealing with their reproductive health. Women are being told they are crazy, women are being told that everything they feel is wrong with their bodies can be cured by a trip to “the Bahamas for a month.” This really is happening in doctor’s offices across Australia.

I asked Annique her advice for any woman whose instincts are telling her something is wrong, even if their doctor isn’t.

“Get a second, third, fourth opinion if you have to … “Be insistent. Never take no for an answer.

“Because you know your body. We know our bodies.”

— Abbey Lenton is a reporter for whimn.com.au

— This story originally appeared on whimn.com.au and is reproduced with permission

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