Health & Wellbeing

My Endometriosis Journey – Update

May 13, 2018

When I woke up in hospital in February, and my surgeon said he found and removed, a large chunk of endometriosis, I didn’t consider the magnitude of my diagnosis and I thought the future would be simple from here. I had assumptions that I would start to feel much better, that I would resume to normal life, and that would be it for doctors visits for the next few years or so. After all I’m usually someone who toughs out the bumpy times in life and pushes on through. But over the next few months, I’ve realised that this is a ‘thing’ I might have to learn to live with and I have to learn to be kind to myself. Gone are the days of ‘pushing’. I’ve pretty much said no to all things social until I have recovered from my next operation, put the halt on pushing myself to do hard-core training (walking and yoga are my new friends) and I’ve had some good weeks and bad weeks.

From my first surgery, there were a about six weeks when I really thought I was on the mend. I was training again, eating healthily, had my energy back and didn’t have any sick days at work.Then the pain crept back like it did before my first surgery. It’s not just a bad time of month for me. It’s an all the time kind of pain that can happen any time. It can feel like a stitch, lower back pain, upset stomach and pressure on my bladder which worsens at night, sometimes so intense that I need to knock myself out with sleeping tablets. This is because the endometriosis is in my bowel and possibly my intestines, and is basically fucking up the zen of my whole digestive system. They could not remove it at the time of my surgery, because I was not aware it was there, and they need a bowel specialist and more testing done. So the last few months have been recovery, tests, and more appointments to talk and talk and talk so I am prepared for what lies ahead.

For a while there, I almost felt good enough and bargained with myself that I could deal with occasional pain that I did not want to go through with the next operation and the recovery process. Until a few weeks ago I had a stitch combined with a feeling like someone is scraping your insides with a hot razor that lasted a whole week. My abdomen was bloated and sore to touch, right up to my rib cage.  “Friends kindly ask me if I am “feeling better”. People don’t know how to handle chronic illness. Other than to wish someone was better. I’ve been there. I didn’t know what to say either. But the truth is I don’t know when I am going to feel better. I’m here. But I’m not better. Yet I smile and politely say “yes”.

But I’m trying to tell the world here like it is, because God knows we don’t speak about this enough.

Someone the other day kindly advised me that I should use aromatherapy oil.

Someone else questioned my motive for having bowel surgery and said the if they were in my position would avoid invasive surgery at all costs.

I smiled and said thank you for the advice but inside I really wanted to punch them in the face.

I wanted to write this post to shine a light on what I have really been going through. I acknowledge that my story is not unique. I am just one in ten of many, many women, and I know women that have less joy and are in more daily pain than I. But these symptoms are things we do not write widely on internet about. You’ll see the pain if you read through the lines in our cancelled plans, cancelled training sessions, absenteeism at work.

But as I woke this weekend to the news that a girl I went to school with passed away from triple breast cancer, I’m reminded that life and health is indeed a precious commodity. I realise my situation could be much worse. I’m grateful for my care and the options I have ahead of me. I’m optimistic that surgery on the 23rd of May will make a big difference to my pain, although it will put me out of action for  a while. I’ve got much to look forward to in the second half of this year and hope the last few months will become a distant memory.

I’m grateful to my family, friends, understanding work place and of course hubby and nurse cats with their endless love.

See you on the other side.

Ashleigh

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