Living with Endometriosis – An Ongoing Journey: Amy

The month of March marks Endometriosis Awareness Month, a movement dedicated to raising worldwide awareness of this often debilitating disease affecting 1 in 10 women. We are sharing stories from women living with endometriosis.

 

 

I was thirteen when I discovered that my periods weren’t like the other girls’ I knew; though, I wouldn’t find out why for another fourteen years. I got my first period on my year seven camp (a water sports camp… because life’s a bitch). This was pre-mobile phone days, so on discovering that I was bleeding I walked the few kilometres to the payphone and called my mum. When I returned, she had bought me a claddagh ring (a recurring talisman in our family) to signify that I was now a woman. I was excited. I felt terribly grown up. But… it hurt. I mean… it really fucking hurt. But… that’s normal, right?

On reflection, I realise just how bad. Especially when I bled. I was tired. Often. Always. I was bloated. I always just assumed I was a little bit fat. To counter that, I went through periods of not eating at all… and being far too thin. I tried to manage my periods and I got on with it. With as little pain management as I could… because, no one else needed as much as I seemed to need. ‘I must be lightweight with pain’, I thought. ‘A pussy’, so to speak. My periods went for eight days. I was sick a lot. It affected my learning and my confidence in my own education. So not only did I feel sick… I felt stupid as well.

Skip ahead.

I remember that loosing my virginity made me question the phrase ‘virginal sacrifice’… because of how much it hurt. I remember afterwards laying to one side of the bed in a ball, in shock. I tried to calm myself down.

‘Ok’, I thought… ‘that was just your first time. Now that’s out of the way, all of the tantric pleasures can begin’! But… it still hurt. Not every time. Not in every way. But… it hurt, more than it should. And that made me feel small and ashamed. I have had many a teary conversation with a lover immediately following intercourse. Fair to say, this made me feel like a total sex god.

My illness and the hormones that are affected by my illness fostered a completely unhealthy relationship with sex. When it hurt, sex felt like a punishment that I deserved for having a broken body. During good phases of my illness, decent sex was all I cared about in a relationship because of all of the times it had made me feel small or worthless. There were points in time when it became the most important thing. Not the friendship or the care. Not the compatibility. The sex. Something I have discussed with a psychologist at length since surgery.

Skip ahead.

I recall explaining to a girlfriend in my early adult years that I felt like I was being internally bludgeoned with a dull axe during my periods. She looked at me sadly and said ‘that’s so unlucky’. I have heard this phrase by multiple women. Now that I know the state of my illness, compared to some… I am the lucky one.

Once I reconciled with myself that my friend probably didn’t have the vagina of a magical unicorn, I began to question my symptoms a little further. Was I the unlucky ducky? The odd one out?

 

 

I was hospitalised for a burst ovarian cyst (the first of seven that have put me in hospital) during a stop over in Wollongong for a gig. I was nineteen. We’d just come back from the bar when I suddenly fell to the floor of our budget accommodation, with a war cry. My friend carried me on her back fireman style to the hospital. She tried to make me laugh while I was internally examined (front and back) by multiple doctors, interns and finally, a machine. I left that experience feeling like a science experiment. Like I had been assaulted.

This was a routine I became extremely accustomed to. I could share various experiences that mirror this but you get the idea. Let’s skip ten years ahead of that, to surgery.

I was twenty-eight and I had been hospitalised again. I was kept there for four days, with limited food and liquid, unable to see a gyno, as I was being monitored for my appendix. I get it… a burst appendix can kill you. But this is a rumba that gets danced every time. Finally, a private surgeon who I’d met previously came in to see me, after a family member made a desperate call. He took one look at me and we made a date for a surgery with suspected endometriosis.

My first surgery was the 2 March 2015, a laparoscopy which determined endometriosis all throughout my pelvic lining. I say first because there will be others as there is no cure for my illness. The illness I share with one in ten women.

To combat my bleeding prior to surgery, surgeons attempted to put in a Mirena. It sent me into shock labour, so they put me on Depo-Provera. My anxiety and depression was now fuelled like a rocket ship, I became suicidal and I hallucinated daily. We tried the Depo in conjunction with a brand new pill. I’ve now tried eight different pills in my life… and needless to say, I have now let that ship sail.

So, I changed my life. Really, an upside down kind of a change. I got myself off the Depo/pill, I moved house and I began to practice yoga. I also went back to study (having left in 2010 after the abortion of a non-viable pregnancy at age twenty-three). My illness and the associated symptoms never let me go back. Until 2015. I will graduate this year as a high school teacher. Studying with endometriosis has been the biggest challenge of my life and when I graduate it will be the proudest day of my life so far.

Have I still got endo? Yes. Does it still impact me? Yes. But… I make the management of it a priority. I work really hard to manage what I have been given

 

What do I do these days to try and combat my symptoms?

  1. I allow myself to take proper targeted medication when I require it, without beating myself up about not being strong.
  2. I float at Astral Float. The magnesium is incredible for pain management and it allows me to switch of and stretch out.
  3. I don’t eat a lot of red meat and I never have soy. These were two things that I discovered were awful to digest and put too much pressure on my intestines. We only have meat in about two meals per week. Everyone is different… keep a food/mood book and see what you come up with.
  4. Deep tissue massage (I really like Alpha Body as you don’t need to leave your house!) and acupuncture. Both of these have made such a difference to me.
  5. I tell people where I am at. I let them meet me wherever I am mentally and physically. It’s amazing how quickly an urban family/tribe will fall behind you to support… no one really expects you to be superhuman.
  6. I contribute to the endometriosis community whenever I can. I share my experience and listen to others. It helps me feel not so alone.
  7. I do yoga. I mediate. This has become one of the most important things to my life. One of my greatest accomplishments was completing the SOULution 200 hour teacher training last year.
  8. I have pelvic therapy. A lot of my pain was due to spasms from years of anticipating pain. It has helped a lot and I am about to do it on a regular basis.
  9. I found a great psychologist. I have opened up and shared parts of myself that I didn’t know existed. She validated how much my endo has impacted other parts of my life. We are working through it whenever I see her.
  10. I speak to myself like I speak to my good friends. I tell myself I am a bad arse boss bitch. That I am strong. That I am an Endo Warrior.

 

If something doesn’t seem normal… it probably isn’t. Talk to someone about it and ensure you are working with up to date information about your person. Because you are worth more than you think.

 

Read other stories from Women Living with Endometriosis

 

To find out more information about endometriosis visit Endometriosis Australia or EndoActive.

Endometriosis can be difficult to diagnose and has a wide range of possible symptoms. If you think you may be  suffering from endo visit your GP. There are heaps of great gynecologists working in both the public and private healthcare systems who they will be able to refer you to.

Don’t forget how important it is to get regular pap smears and sexual health checks.

Endometriosis Australia is a nationally accredited charity that endeavours to increase recognition of endometriosis, provide endometriosis education programs, and provide funding for endometriosis research.

Team Leiden

Sometimes it takes more than one Contributor to make magic.

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