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What's that? You have Endo!?

Posted by Astronaught Vegas on

Head Trainer Sab has been MIA due to an important surgical procedure.

Sab has been managing a chronic condition that can be debilitating as fuck. BUT due to women’s health not being a priority in society she’s only just found health care professionals who are willing to investigate her insides to find a solution.

I spoke to Sab about her upcoming op from the reinforced walls of the AWF compound, which protects the world from the full force of her IRL excessive energy and niceness. And when I say spoke, basically I chucked some questions her way. We hope it helps, particularly for those of you who face similar issues.

Please note: AWF recognises that those with ovaries include our trans and non-binary friends. We have aimed to keep the language in this discussion inclusive but please do let us know if we’ve stuffed any of it up.

What kind of operation are you having?
S: Operative Laparoscopy, Excision of endometriosis.

What is it for?
S: Suspected Endo.

What is endometriosis and how does it affect you? Is it different from other forms of period distress?

S: Mine is not cyclical it's all the time, pain and not always in the same place, it can be like it is now, throbbing in from the right side, through my tummy into my hip and low back.

How did you find out you needed the op?
S: I had to self-advocate after years of chronic pain and zero help from GPs and an overall lack of knowledge of the disease, which lead me to a rampage of making it happen and tap-dancing at a new GP. (AV: not sure if she means literally tap dancing – she probs does, it’s Sab after all)
Over the years it has been an exhausting process. Leaving a GP's office or after having a treatment and gaining no answers, it’s been an ongoing, exhausting mission, each time I attempted to find answers, constantly being let down. Once a GP handed me a pack of anti-inflammatory tabs and told me to 'suck it up'. I've been for so many pointless scans, and tests the overall process has been truly disheartening.

What is the operation timeline and preparation?
S: I've stopped the beers!!! Around 15 days prior. Exercise has become impossible, and teaching is only possible with taking well timed pain killers. It took a while to get into see the specialist, not just because of lockdowns/ restrictions, but because there are not many that actually know what endo is.

How many people with ovaries does endometriosis affect?
S: The shit thing is I bet so many people have it and are not properly diagnosed. (AV: available stats point to least one in 9 Australians with ovaries being affected).

Are there any risks involved in the operation?
S: Probs, but I really don't care, I need answers. For too long now I've been dealing with this pain, I'll do anything to get answers and hopefully a small amount of relief from constant discomfort.

Do you have to stay in the hospital long?
S: Hope not, early start and hopefully out by mid arvo. I guess it depends on what they find.

What do you hope having the operation will achieve?
S: Answers, knowing it's not in my head and that I can move on knowing that I stood up for myself and will know either way. Then it's onto other options, having this procedure is the only true way of knowing you have it.

Are you scared and why?
S: I'm scared about the downtime, the lead up has truly made me realise just how much stuff I have on my plate, and I reckon it's all a coping mechanism to help distract from the chronic pain. I've realised that I'm actually probably really not a workaholic, but someone trying to work the pain away but having so many distractions - it's a vice I guess.

How long is the recovery period?
S: I've been on forums that seem to be way more helpful then any GP I've seen in my life, reading about actual first hand experiences has blown my mind, people say anywhere from a week to a month, each time it's different and each person is different. So I've had to pop stuff I'm 'working on' on hold, get cover for classes and time off my part time job.
I'm also super nervous about going back into the office.

Are there any alternatives to surgery?
S: No.

How far do we have to smash the patriarchy before we get more funding for ovarian issues?
S: I'm not sure it's specifically ovarian issues, I honestly think its women's health in general has been neglected for everrr, I still can't talk to my mum about her issues and my Nanna had all kinds of stuff that were never openly discussed, so I'm hoping with time we can no longer be told to suck it up and actual have the right training and experts to help better manage women's health.
The other thing is the cost of the surgery is not clear, there are some estimates, but the overall costs are not explained or highlighted. So I'm worried I'm going to come out of this with sweet scars and a massive debt. But like I mentioned before, I'm so desperate for answers. I'll do anything to know.

Would you prefer to get a cat instead?
S: Haha no. Although I am sick of talking to myself all the time.

When you go to hospital what kind of treats do you prefer that people bring?
S: I'm only there for the day, I can't afford a stay I don't have (can't afford) private health and this is really gonna sting.

I really hope crew will still attend and join my classes while I have them covered, the legends covering me will try much harder to win your affections and love. I'm looking forward to a full recovery where I can get back to doing roundhouse kicks for breakfast and not have crippling pain for the rest of the day/week. Ideally I look forward to doing everyday tasks for work or around the house without having underlying pain, I might be a new person without underlying pain, less irritable, less of a cunt. (AV: Gawd crew can you imagine Sab being any more enthusiastic? We’re in for a treat?) But I guess we'll all have to wait and see. I'll also probs want to save the world but, first prep for the op. I just bought giant pads, and a new comfy pillow. Bring it on, cut me open and let's see what we find aye!

AV: I suspect they’ll find beer?

A few weeks after the op, Sab is up and almost fighting. Let’s find out how it went shall we? Yes, yes we shall.

How are you feeling?
S: Shit house, but sooo much better than before I went, the lead up was excruciating, and I also thought it was a good idea to teach 2 classes the night before the op….hmmm what a dick head.
I’m actually having to retrain my brain, I didn’t realise how much of the endo was referring pain to other areas of my bod.
What used to be constant ache, is no longer there or dull, so I have to tell my bod, it’s ok now, you can use that leg.
But truthfully so relieved, that all the pain was not actually in my head, it was real and my surgeon is magic.

What did the op feel like? Was it different to what you expected?
S: I had no idea where the surgeon would find endo if any, and when it was removed from bladder and uterus, oh wow, using the toilet was the worst part of recovery.
So no real expectations, which made it hard to plan out what to expect in my head.

What information did the doctors get from performing it?
S: Having a look see around in there they were able to suss out all the bits in my pelvic regions, take pics for records.

What happens now?
S: Wait and see. See what works what doesn’t I’m hungry to kick and punch though, looking forward to some relief for a while and getting my mental game back into fitness. Where my brain belongs.

How can we support people with ovaries who have this or any other debilitating-related issues?
S: Talk about it! I’ve learnt more from fellow sufferers/ survivors than anything.

Are we back on the beers?
S: shhh, yeah just sneaking in a few.

You read it here; got issues? Talk to people. If you feel something’s wrong but you’re getting nowhere with your health care professionals ask for recommendations, join Facebook/ Insta Groups, listen to other peoples’ stories. Chronic pain can and does affect every part of your life. And if anyone’s telling you you’re making it up, get another professional opinion until someone does something to actually improve your quality of life.

Note: I have had the same exploratory surgery as Sab went in for but mine was mild. I didn’t end up having endo, I just inherited other fucked up hormone imbalances. The post-op can hurt in a really stingy way. Sab will need us crew to be very strict and make sure she takes time for a full recovery as she is a perky masochist. Don’t worry but, we have some ace trainers to fill in/ help out.
Check out the pages below for more info and talk to other endometriosis recipients about their experiences. Don’t be afraid to demand help. Probs not from the doctor who told me that having a child would solve my debilitating period pain. No really, that was an actual thing that was said.

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Join Sab's online classes: https://alternativeactivewear.com.au/pages/calendar


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