These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
21 and dying inside...
by Ally Lewis
I still remember the first time I got my period, how couldn't I.
I was at a state choir festival in year 7, singing with my fellow peers in front of 1000`s of people. I felt so much pain in my abdomen that I could barely stand any more. I felt nauseas and I definitely couldn't concentrate on singing.
I walked off stage embarrassed and upset.
I was at the back with the ambulance officers as they look for anti nausea/ pain relief etc.
Nothing helped I felt like all I wanted to do was crawl up in a ball.
Eventually the festival was over and my mum got sent to the back to find me. That's when it started.
I went home that day feeling upset as I missed out. Little did I know when I went home to get changed I had gotten my first period. It was the start of a transition of hell which for me has only gotten worse.
It went on for years (in year 7 in Australia I was 12 going on 13) as I got older I would complain to my mum and sister of period pain, my mum and sister always said their pain was never bad and may not have initially had much sympathy for me
As the years went on I started to explore sex etc. My first boyfriend and I when I was 15 always played around but never went too far but for me I never enjoyed it. I was always in pain but was to scared to tell him.
We had been together for 1 year but hadn't had sex, he started to pressure me but I knew if one finger hurt would, what would sex be like?
He eventually broke up with me and said he had waited long enough.
I talked to the girls at school and of course they had all the advice in the world on sex, relax more, you must be tight, you're nervous and the list goes on but for me it felt impossible I couldn't even use a tampon!
I didn't have another boyfriend until I was 17.
I tried my hardest to do everything my friends had taught me and we tried but it was impossible.
It was impossible for me to have sex. When I realized that to myself I felt so alone.
I was in agony because of my body and I couldn't have sex because of my body. Something humans are designed to do (or so they say) I couldn't!
Relationship after short relationship no one wanted me.
I decided to be single and try and ignore my problem, I'm young who cares I thought. Then it got worse at 18. I was doing a hairdressing apprenticeship in my 3rd year (in total 4 years) when I got fired for not putting in enough effort at work.
I was constantly in pain taking nurofen by the handful, I lost my job because of my pain I couldn't cope and I was constantly sick.
The December of that year I weighed only 48 kilos the nurofen took its toll on me and I was diagnosed with stomach ulcers. That day in the doctors my mum demanded they help me with my period pain also, as whenever I went and spoke to a GP myself they would basically say that's life and I am a woman.
Finally I was booked to see a gyno who had a great plan for me. She told me she thought I had endometriosis and we will do a laparoscopy and cut it out. Also to help for sex I had botox also injected into the pelvic area to help numb the area.
It was a huge surgery done successfully, a year later and I had very little period pain and was seeing a pelvic physio for the sex side of things. The botox didn't help as it took so long to recover from surgery by the time I was even thinking about looking downstairs the botox was starting to ware off.
So again we just did day surgery for botox, unfortunately the surgeon over did it. I was then hospitalized and catheterized I couldn't void!
Once again the botox didn't work and I was left feeling alone again.
I'm now only 21, seen more specialists then I can count. I have been in a 3 year relationship without sex which has had its ups and downs but we have been on this journey together and hopeful someone can help me.
I have now lost my new job which I had worked at for 3 years because after for laparoscopy my endometriosis grew back and doubled. I had 2 years of pain free months to now worse than I ever was.
I've now got anxiety problems because being in pain everyday for at least the last year/or two has made me mentally unstable. I feel like endometriosis has taken my quality of life away and yes I'm only young but since I was 12 I've lived in a world of invisible pain, yes I could be so much worse off but this is my life and this is my story.
Join in and write your own page! It's easy to do. How? Simply click here to return to How endometriosis affects your life.
As featured in: