amber rahim

Chronic illness: the parts we don't talk about

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Lady gardens and useless doctors: Endometriosis, I’m coming for you

In an attempt to not try and solve all my problems by myself, I went to the gynaecologist today. Warning: contains references to lady gardens and annoying doctors.

It’s always such a weird experience. They ask you to go behind a little curtain to take off your trousers and knickers and then just expect you to walk back into the room with your butt hanging out. Why even have the curtain?

It was only as I was hanging my butt out that I realised that not only do I need to trim the rose bush in my garden (literally. the branches are too long and the kids can’t get to their play house anymore. Yes! I’m talking about a real garden here), but I haven’t been paying attention to my other “gardening” needs. The lawns a mess and my legs are so winter ready that I can plait them.

Well, f it, I’m going to be uncomfortable, we might as well both be uncomfortable.

When I made the appointment I didn’t give any thoughts to maintenance or what “it” looked like (I mean, apart from those who vagazzle, who does?). My primary thought was, will they actually help me?

And after the pokes in the belly and examinations into too many holes, I’m back where I started: I’m going to have to figure this out for myself.

My endometriosis is getting steadily and painfully worse. Still, the only options they gave me are are hormones/contraception or pain killers.

With the severity of my morning sickness with S, I’m not touching hormones and the pain killers are just going to make my IBS worse. And honestly, it’s the IBS that I’m trying to fix.

IBS has many causes and I have successfully dealt with the food related causes. Drastically changing my diet and excluding the WIDE range of foods (thank you Montash University and your fodmap app) meant I was completely symptom free from July to Sep this year. Woohoo! That’s after years of constant symptoms. I never thought it would work. But it did.

But my endometriosis is getting worse and since the summer, the pain has gone up drastically. My IBS symptoms, although a little different, are back.

And my poor gut health lead to my poor mental health. And I’m not going back there. My mind means too much for me to lose it again.

Which is why I was prepared to get poked and prodded today. Because IBS is a symptom of/caused by endometriosis.

So what did this doctor tell me today?

There is no link between endometriosis and IBS.

WTF? Every teenage girl in the world knows there is a link between menstruation and digestion: we feel it every month.

This whole appointment really triggered my

“oh for f*cks sake, I’ll do it myself” reflex.

It’s a really strong trait of mine that I have been learning to let go. And I’m getting pretty good at it. I am a reformed perfectionist after all.

But even as I was muttering to myself

why did I bother?

I realised that the problem wasn’t with asking for help. I just clearly asked the wrong person.

So now I’m on the hunt for someone who does understand the link, that is willing to look past the standard approaches, who’s willing to work with me to find a solution that fits my needs.

So wish me luck. I have no idea where to find them. But my mind is at stake so the quest begins.

docswithoutdiplomas

p.s. perhaps it wasn’t fair to ask him if he’s ever had a period. But if only I could get him into one of those labour simulators… then maybe he’d see living with pain, cramps and IBS a little differently.

 

 


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Tough love

for those who know me on FB you know that Fs Mickey button exploded. Again.

She’s still traumatized from the first time that happened. And from the last time the nurse changed (when the nurse had to push it through her abs of steel).

So my dear daughter, when I heard what happened at school on Monday I knew that it was going to be another really hard day for you.

You walked in knowing what was going to happen (it’s at these times that I wish you weren’t so smart).

I held you as you cried your heart out. Told you it was going to be ok, both of us knowing that there was a bump in the road to “ok” that you needed to face first.

I wish I could have held you until your fears disappeared. But we had 30 mins to get to the hospital and get a new mickey in place before the nurse left for the day.

So I put on my firm, tough mama voice and made you come with me. You were literally sick with anxiety. I wiped your mouth and then we had to keep moving.

We needed your cooperation: when you tense, your abs create a solid wall where it’s almost impossible to insert a new mickey into that hole in your stomach.

So we practiced at home, in the car, on the hospital table. And somehow you managed to scream and relax your abs at the same time (holey moley batman, how did you do that?)

I’m sorry I had to make you choose. Choose between admission to hospital and a potassium IV (that burns people, it burns your veins) or let us change the Mickey.

Im sorry. I hope you believed when I said I wished it could be different.

I wish that your smile on receiving the cuddly monkey toy from the nurse went all the way in, to your soul. I wish that it could heal the scar on the inside as quickly as it changed your expression.

I wish I could have held you until your fears were gone.

And I hope that one day you will understand that I was doing my best for you: making the tough decisions.

Tough love. Sometimes it sucks to be a mum.