A Letter to Endometriosis

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Dear Endo

Because of you, I always thought that I was a bit weak. I thought that my pain tolerance was pretty damn low, and wondered how all the other girls could get around, continuing with their lives even though every month they were visited by a monster which brought such pain it doubled you over, making walking impossible, breathing impossible, and thinking impossible.

I was sixteen, I think, when I went to the doctor for the first time and asked tentatively, ‘is this normal? Is bleeding for two weeks straight normal? Is having Aunt Flo come and go as she pleased, like she had her own key and preferred spending time at your house rather than her own normal?’

Yes and no was the answer. Irregularity for some girls often happens. The answer to my problems, I was told, was the Pill.

After I got my head around the fact that my very Catholic doctor just wrote me a prescription for the Pill, I then had to face my Catholic-when-it-suited-them parents with the knowledge their daughter would be going on the Pill.

Dad looked at me, face screwed in a ‘and?’ expression before asking, ‘will it help?’

‘The doctor said it would,’ I told him.

‘Then what’s the problem?’

Honestly, at times my parents mystified me.

Still, I was nervous. I’d seen what had happened to other girls at school when they went on the pill. Of course, theirs were for contraceptive reasons rather than medical, but after seeing their once thin faces bloat to double their size I was quite anxious.

Thankfully, I didn’t get any face-bloating. There were a few mornings when I was doubled over in the shower dry-retching but other than that I was fine.

Aunt Flo visited only at the designated times, and stayed only for a week. There was still pain, of course, but I told myself I was just being a sissy. With hindsight, I can see that this was abnormal, as I’ve always handled pain very well. Bee stings were met with a simple., ‘ooh!’ as a child of six years old. A hit on the head which put me in hospital was met with just a few tears of embarrassment and annoyance that I couldn’t finish the game of chasey. A scrape of the head against the brick wall was met with a scream but only when I saw my blood soaked hand. I should have known that the Pill wasn’t the answer to everything.

As I got older, things began to change. Irregularity returned, prolonged bleeding returned, and I began taking stronger painkillers to cope with the pain. I was also constantly sick, and had an incessant need to urinate, like every twenty minutes. Again, I told myself that this was simply a fault in my body, something which I should have been able to overcome.

Life became unbearable and I thought perhaps I needed a different kind of Pill. Something stronger. For the first time in my life I visited a female doctor. The first one to ask me about my full menstrual history. She sat and patiently listened, and then said she would refer me to a ‘specialist.’

I was a little bit embarrassed, if I’m honest. I thought perhaps that I may have exaggerated things. Still, I went to the specialist, who sent me off to have an ultrasound. Wasn’t that a terrible experience. Not just having to drink so much water without weeing which was agony enough, but because I had to face the indignity of the internal ultrasound. You sit there, foot in stirrups, and look over at this thing which, if it had been a penis, you would have looked to the man and said, ‘nice knowing you, but that’s not going anywhere near me!’

It was literally agony. As in, it hurt. Desperately hurt. Again, I thought I was being weak.

Yet when I went back to the specialist I was told that I would need to have a ‘little procedure.’ A laparoscopy. The only thing I feared was having the surgery and the doctors finding nothing. That it was all in my head.

Yet after the surgery, a drainage tube sticking out of abdomen, the specialist told me they had cut out a vast amount of you, endometriosis. In the photos there were so many holes I wondered if there was any of my uterus left. I felt a little vindicated. There really was something wrong with me.

It was amazing to all that so much of you, Endo could grow in someone so young – I was only in my early twenties.

At twenty five, I was told by yet another doctor that I should have children. Now. Before it’s too late.

A few years after that I had more surgery. There wasn’t as much of you this time for them to cut out, but after my last surgery one of my ovaries had fallen into the hole left when they cut you out and had stayed there, twisted and limp. They stitched it back up in place.

There was something else – you’d snaked your way into my bladder, creating a new condition, one that explained my incessant urination, and one I now have a pill for to control.

I’ve been told there’s no point on being operated on again, Endo. Apparently you can’t grow back on the bits they’ve cut out, but you’ll find a new bit, and there’s only a matter of time before you find something important to destroy.

The only sure way to be rid of you forever, Endo, is to remove all my lady bits. You have no idea how much I look forward to that day. Of course, pregnancy is often the key to get rid of you, but the paradox is, you make conceiving damn near impossible.

So I guess that means I’ll be spending the next few years living with you, my unwelcome guest, trying to get through the pain every month and those various other times you like to rear your ugly head, just to remind me that you’re there. I can’t necessarily say that I hate you, mind. Yes, you’ve made my life shitty and uncomfortable, but I figure there are people out there that have to deal with a lot worse shit. People who have cancer or who are disabled. People who are brain damaged. All I have to do is live with a little pain and know that parenthood is probably something I’ll never experience. It’s not so bad.

Still, I do look forward to the day, Endo, when you’re no longer a part of my life. Perhaps, if you would be so kind, you could take it easy on me for the next few years.

Yours most insincerely,

Giorge

For more information on Endometriosis, head to: www.endometriosis.org.au

11 thoughts on “A Letter to Endometriosis

    1. As you are not the first to not know what the condition is (here I am, living with it and therefore assuming it’s common knowledge to all) I have included a link for more info!

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  1. There should be a post script to this letter, which states that this condition has also affected those around me. Particularly Mr Thomas. It is never fun living with someone who is constantly in pain, and the worst thing about this condition is that others apart from me have to live with it.

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  2. I’m so sorry for what you have to endure. I know all too well the effects of this monthly visitor as I have been dealing with it since my teen years. I have four children and it never changed a thing. After the 2nd pregnancy the pain did become minimal and I was in heaven, but with the 3rd pregnancy, it returned. No one will ever know the agony and interruption of life and limb that you endure unless they too go through this. I also wrote about it here https://deejourneyofafabmom.wordpress.com/2013/12/31/good-morning-heartache/ feel free to read my experience if for nothing else to know you aren’t alone. I feel you. It ain’t easy. But we do what we can and like to said, although it doesn’t feel like it at the moment when your monthly comes, there is always someone worse off then you.
    Dee

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    1. You’re right, there’s not a lot to like about it. I was trying to find the picture they took of my fallen ovary – now there’s something disgusting. I basically included that picture because I thought it pretty unfair that following surgery which is traumatic and painful enough, I have to sit there while the doctor shows me all these photos almost as if we’ve having a slideshow night and they’re showing me what they did on their holiday. It gets even grosser because they inject all this blue dye every where. When I get the hysterectomy done it will be with the strict provision to not see any of the photos afterwards.

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  3. And I though I had it tough with my pancreatitis, the only thing we have in common here is the pain and the tube coming out of the stomach. Seems you´re doing better know though, that´s good. Keep on reading more stuff, cause I pretty much read most of your poetry.

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  4. Thank you for your post! I am 22 and still working on getting diagnosed with endo. Just wrote a post about it actually. I can definitely relate to feeling like its all in your head. I have an appointment coming up soon with an endo specialist so hopefully that will help! Best of luck 🙂

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    1. I hate to break it to you, but most endo can only be diagnose with a laparoscopy as it can’t be seen on ultrasounds. It sucks, because surgery is never great, but at least then you can know for sure and have an understanding about your condition. I wish you the best of health.

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