Endometriosis: my un-diagnosis

This is a condition very close to my heart

And something that breaks my heart is knowing how many woman go through AGONISING pain monthly, not knowing they likely have this condition

NOTE: this is very honest and sometimes graphic. So if you get grossed out… then you have to SUCK IT UP AND DEFINITELY READ THIS TOO.

1 IN 10 WOMEN SUFFER WITH ENDO

YET SO MANY WOMAN DON’T KNOW THEY HAVE IT

Up until more recently, not a lot of attention has been given to this condition.

And thank awareness that something finally has!

Since 12 years old I’ve experienced 10/10 period pains almost every month. I couldn’t bare to go a period without taking naprogesics, sometimes a concoction of codeine and other things.

I’ve  once called an ambulance and twice been to hospital, in so much pain, because it rid me such helplessness that I would wonder if I was dying. I’ll never forget that traumatizing yoga session that led me to drive myself to The Alfred (which in retrospect was a dangerous idea) “next time, call an ambulance love” the nurturing male nurse kindly lectured me, seeing how really incapacitated I was.

When I was a teenager I remember mum and dad having to witness me writhing on the floor crying for help.

Then it was my husband having to deal with waking up in the middle of the night to me once again crying on the kitchen floor kneeled over in utter distress.

But it’s not just the pain…

It’s the other symptoms that come with it that many woman don’t talk about.

It’s the insatiable bloating

It’s the stabbing ovarian pulsations around the middle of your cycle.

It’s the sharp knife-like pain shooting up your ‘backside’ when you have your period, making it uncomfortable to sit down.

It’s the pain and discomfort with intercourse that’s worse at certain times of the month (and for some, is always there).

It’s the fear of “that can’t be right” every time you witness several clots flood the bowl.

It’s the fleeting moment of fear when you realise you have no pain killers at midnight and you anticipate a night of agony – and there’s nothing you can do about it.

It’s going to work like a zombie because you’ve been up all night facing that monthly ordeal, and now you’re sleep deprived and dosed up on pain killers.

Or the fear your boss will think you’re one of ‘those’ people that always call in sick… so you suck it up and go anyway.

It’s the incredible frustration you face after every trip to the doctor who once-more says ‘here’s another pain killer’, ‘here’s the pill’ or ‘there’s nothing else you can do’.

And then the way those drugs then cause other problems like gut pain and exacerbation of the condition itself.

The $400 trans-vaginal ultrasound that you’re told can sometimes pick up some forms of endo – but “you’re completely healthy”.

It’s the tears that no one knows you’re crying because you can’t stop wondering “why me, why did I have to suffer like this, and she doesn’t”.

The helplessness when no one understands.

…when you know your partner doesn’t really understand the struggle you’re going through.

… yet they feel as helpless as you because they can’t do anything to ease your pain.

(Loved ones, you can help by not asking – but doing; warm the heat pack, rub their back, stay calm for them, cook them dinner, be there, and just let them eat chocolate afterwards).

Or the worry after a google search that makes you think you might not be able to have children.

But for me…

It’s the fact that I’ve never even been given the diagnosis, but it can’t possibly be anything else.

So this year I finally decided to do something about it.

Going through my degree and learning about this condition, I began to realise that there was a lot out there that can support the symptoms and prevention, that most don’t commonly know.

But at the time of being a broke uni student I could never afford the treatments.

So more recently I decided to make it a priority and see a women’s health and fertility specialist Naturopath – Samantha Van Dort, who has also gone through her own ordeal with the condition. She was once told she couldn’t have kids. She now has two healthy boys.

Sam has honestly been my saviour. And I’m so lucky that I also get to work with her.

What I’ve learnt is that whilst endometriosis can be a stubborn b*#ch, there are a lot of things that can be done to resolve most of the symptoms, and most importantly, prevent further adhesions from growing.

The best thing for me though, is that I’ve been able to considerably cut down on the pain killers by getting to the root cause and naturally reducing inflammation in the body, and clearing excess oestrogen.

I’ll be brutally honest. It’s not an overnight fix. You have to stay committed and be prepared to spend the money.

You have to be prepared to take 10 different supplements daily for several months to correct all the damage and deficiencies that have been done for the past 15 years.

And it’s still absolutely a working progress.

But I can tell you. When you ARE ready, the perseverance is well worth the commitment.

When I was 21 I demanded answers from my then GP and I was met with a lot of resistance. It was my mum who said “it’s your body Jade and you need to tell them that you want it investigated”.

After a referral to a gynecologist, I was met with more resistance that I shouldn’t bother with a laparoscopy and even if they did find adhesions and have it burnt off, it could cause permanent damage and may cause infertility. As per my mum’s advice, I stood my ground and demanded I have one. I just wanted answers.

I woke up from surgery.

Nothing was detected.

To be honest I was kind of disappointed.

WTF else could it be?

A gremlin invading my womb every 28 days to have a Scream party?

They carried out a procedure where they dilated the cervix which supposedly may help with the pain.

Aaannnnd it didn’t do shit.

So for the next five years I carried on through the pain and analgesics.

This just became a part of my life. I got good at nipping it in the bud before it began. You’re always told to take the analgesic BEFORE the pain to get on top of it. It then kind of made you think you didn’t actually get the pains any more.

But really you were just putting a plug in a volcano, hoping it wouldn’t erupt.

But as I became more curious through my health science degree, I began thinking differently… more ‘holistically’.

Here’s an idea: instead of masking the problem – how about we actually get to root cause?

BOMBSHELL.

Since doing my research, I have come across some stories where endo may have gone un-detected upon laparoscopy (albeit, it’s uncommon). I’ve also become aware that you really need to be seeking a specialised endo surgeon (and probably not the local hospital in a town of 24,000 people as did I back then).

Maybe I didn’t have it. Maybe I don’t have it. Unfortunately I don’t have that official answer.

Thus just wanting to have that word on a piece of paper, I contemplated going on a wait list to get another laparoscopy. Unfortunately without private health insurance, seeing one of those specialists was off the cards.

But what I have since found out is that one of the best things for endo, can often be pregnancy. Whilst I’m not having a baby, or trying just yet. I have decided that given my strong understanding, and the support of my integrated GP (Dr Wesley Ang) and Naturopath (Samantha Van Dort), I feel I can do the best I can now to support it and prevent further issues through natural medicine, diet and lifestyle.

And then when it comes to ‘trying’ to conceive, we’ll have set up the best possible conditions for life to grow. Then if no outcome, we can re-open investigations.

After a LOT of research around differential diagnoses, I’ve also come to realise there really can’t be anything else causing these problems. And thus treatment remains the same; reduce the inflammation, prevent adhesions, modulate hormones.

One thing’s for sure with this condition is that if you step one foot out of line for more than a few days with your diet, things can come flooding back in once more.

I’ve recently become reminded of this as I’d abstained from alcohol almost completely for the past 5 months as we worked on treatments. Then this weekend I had a few glasses of wine a couple of nights in a row, (and about 30 marshmallows by the fire), and wondered why I suddenly became so incredibly bloated and uncomfortable.

Thus this truly highlights the significance of quality diet and lifestyle when it comes to supporting endo.

Whilst I can’t express enough the important of seeking an expert collaborative health care team before self-prescribing, there are definitely some things you can start doing to support your health through endo.

What you should definitely do is make sure you have the following:

  • An integrated GP: a medical doctor who is open to working with natural health care practitioners and considers all aspects of health (rather than just a script pad).
  • A naturopath who specialises in female health: whilst nutrition is a significant element, herbal medicine provides irreplaceable support for reducing inflammation, modulating hormones, and providing symptomatic relief without harmful long-term effects.

KEY ASPECTS OF HEALING

Again, I can’t stress enough the importance of speaking to someone about these options, rather than self-prescribing. When I look back at the years of making this mistake, I could have saved myself thousands of dollars in guessing, and put that towards functional testing and treatments.

But here are the foundations:

INFLAMMATION:

First you have to understand that pain killers such as naprogesics work because they block your inflammatory pathway. Thus when you understand this mechanism of ‘inflammation = pain’, you can understand that we can do a great deal to reduce pain by supporting the body to NATURALLY reduce its inflammatory pathway.

As naturopaths we can do this with:

DIET

HIGH in fibre, fruits and vege, antioxidants, healthy fats – especially omega 3, filtered water.

LOW to NO sugar, grains, processed carbs, dairy, saturated fats, and alcohol.

HERBAL MEDICINE: always tailored to the individual, we work with anti-inflammatory herbs, hormonal modulators, HPA-axis support, liver support and symptomatic analgesics as needed.

GUT HEALTH: You pretty much cannot support endo or ANY hormonal condition, without addressing the gut. This has been one of my biggest problems for a long time following a string of South East Asia parasitic infections, and my lack-of appendix. I notice the direct correlation between worsened symptoms when I haven’t looked after my gut health, and thus better outcomes when I heal my gut. One of the best things you can do is get your bowel movements regular and moving, as slow transit lead to oestrogen re-absorption, as well as toxic waste re-entering the body. And whilst pro-biotics may play a temporary role, the key is feeding your OWN gut bugs the RIGHT foods to help them thrive.

LIVER DETOXIFICATION: It is well known that oestrogen dominance (a driver behind high proliferation) stems from poor phase II liver detoxification. There are indeed genetic pre-dispositions. However as a new saying goes “genes are your tendency, not your destiny”. You can have gene testing if you wish, otherwise, we’ll often work through the liver pathways regardless, which have considerable outcomes. Additionally, poor detoxification also greatly depends on environmental exposures such as heating in plastics, chemical cleaning products, certain skin-care and beauty products, deodorants, alcohol and poor diet. There is also some opinion surrounding possible negative impacts of tampon use, thus I recommend using re-usable cotton pads and silicon ‘cups’. Plus they’re a lot more eco-friendly.

NUTRIENTS: nutrient supplementation is often non-negotiable (unless you’re seriously on-point with diet – which hardly anyone is). Some of these nutrients in practitioner-advised high doses often include zinc, B vitamins, EPA/DHA, vitamin E, glutathione, NAC, DIM and many more, But again, it depends on each individual case.

MINDFULNESS: stress plays a critical role in reducing any health condition. Thus meditation, exercise and/or other techniques are important for supporting a healthy nervous system.

In conclusion

This ‘blog’ started as a late-night instragram post. But as I unravelled, I realised I had a pretty important message to spread and one that I’ve held in for far too long.

Furthermore, as I now see this condition present in clinic on the weekly, I realise I can make a powerful difference.

Whilst I don’t have a clear diagnosis, thus I can’t ‘officially’ claim to have endo, what I do hope to bring from this is:

  • Awareness of the condition, how to identify whether you might have it, and whether you should see your GP and other specialists for investigations.
  • Hope in knowing it doesn’t have to be a life sentence: even though you feel like you tried everything – there is still support you might not be aware of.

In saying all of this I have full understanding around the complexities and variations in severity for different girls. For some, it can be an ‘easy’ fix with surgery. For some, it’s a little bit of management, but it doesn’t come back. For others, it’s a vicious creature that comes crawling back in droves. But I can speak with confidence that when you understand the mechanism behind pain and hormones, you can understand that there are always thing we can do to mitigate your discomfort and give you more lease on life.

My heart truly goes out to every girl who has suffered any one of these symptoms – whether endo or not. My heart goes out to those who may have been told that they cannot conceive, or are still trying. And my heart goes out to those who have lost hope – but I want you to know there are still other options.

If this is something you’ve related with, connected with, or feel like you know someone it could help, please reach out and share your thoughts or comments. Ask questions. Or please, share this with the world so we can bring awareness to this silent condition and get more people talking.

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2 Comments

  1. Hi! Great article!

    I have endo, had the laparoscopy with surgical removal. It didn’t really help.

    I believe I also have primary dysmenorrhoea which causes the pain. My “only” symptom (I use quotation marks because even though it’s really my only symptom it’s horrific) is terrible pain every month – usually days 2-4. As far as I know, people with endo often have many other symptoms at different times of the cycle and in different locations. Because that’s not the case for me (thank goodness), I feel that primary dysmenorrhoea is more relevant. After all, some women with endo are asymptomatic.

    I spent a lot of time focusing on endo, but actually I think addressing the dysmenorrhoea has been more appropriate. I think with the massive (and much needed) focus on endo recently plain old primary dysmenorrhoea is a potential diagnosis that should be investigated and not missed.

    I seem to be doing much better with Vitamin E which I hadn’t really addressed before for some reason. I already take Mg, Bs, zinc, EPO, high dose curcumin but the Vitamin E seems to have made a noticeable difference with reduction in pain and also the exhaustion I usually get.

    Having said all that, there is a lot of treatment crossover between endo and primary dysmenorrhoea anyway.

    • Hi Allison,

      Thank you so much for your comment and sharing your story. This is what I so want to see; other woman speaking out. Regardless of a diagnosis, or lack thereof, we need to bring it to light because ultimately dysmenorrhoea is never ‘normal’.

      In your case I would imagine your dysmenorrhoea would be ‘secondary’ as yours is associated with the endometriosis? Whereas primary is associated with no other known pathology.

      For a long time I’ve only ever been able to call mine ‘dysmenorrhoea’ (which is simply a fancy name for period pain). But meanwhile I fit the picture for all the other classic endo signs I see in my patients. However, what I’ve come to realise, as you’ve kind of pointed out here, is that the treatment doesn’t differ that much does it.

      Looks like you’re definitely taking all of the right things! Very similar to what I take also. How do you find the EPO? For some women it can make it worse, whilst others it makes it better. Vitamin E and curcumin are definitely non-negotiobles. I also take Cinnex as cinnamon has also been shown to help with pain.

      Sounds like you’re in good hands. Hopefully other people read this and see all these great natural products that can help xx

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