Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Diagnosed at 20, should have been diagnosed years ago!

Hi girls,

I want to share this story with you, so if you think you might have endometriosis or are going through exactly what I did.. please keep harassing your GP to get you booked in for surgery.

So I have had severe, heavy, painful periods ever since I first got them when I was around 11/12 years old.. Obviously I didn't know what to expect for period pain at this age.. but every time I had my period I would be in tears, curled up in a ball with a heat pack on my tummy and vomiting because the pain was that severe I couldn't move..

This happened every single month I got my period, it was distressing!
Mum and I went doctors they said it's just 'hormones' it'll be fine.. Kept happening.. Went back again and I got put on the pill at age 13/14 because the pill should settle the hormones and take away the pain.. The only thing the pill took away was my vomiting.. I was still in severe pain every month, not being able to move, curled up in a ball with a hot water bottles in tears.

I stayed on the pill until I was 18 years old, over the years I still kept going doctors complaining of the pain.. They did an ultrasound and found nothing.. They then put me on 'Ponstan' which are period pain tablets that didn't help alot.. They kept saying it was all normal and they don't know why I'm getting such severe pains.

After finishing school, getting a job and turning 18.. I was so sick and tired of these pains, I had enough.. I couldn't keep taking days off work because I was in too much pain.. It was ruining my life, literally!

I was studying nursing and decided to go off the pill and regulate my period naturally and see if it helped the pain.. It didn't

There have been a few times over the past two years (18-20) where I have actually fainted, gotten dizzy and gone pale cause the pain was that severe.. It turned me off eating, drinking.. you name it!

I wasn't just getting severe cramps when I had my period.. I got them every single day! Every day I ended up getting severe cramps even though I didn't have my period.. Strange yes I know. People thought I might need to go to the toilet, or I had a UTI.. but I knew the pain and the location.. I knew it had something to do with my uterus! This started when I was maybe 17 years, every day till now age 20.

When I was 19 I started searching causes of severe abdominal pain and looking into all the diagnoses to see if my symptoms matched.. Endometriosis was one, I didn't really think I had it at the time.. Cysts were another but I had an ultrasound in sept 2013 and it showed nothing.. Cancer was another I was curious about.. I just kept self diagnosing myself with everything haha..

Then I was talking to a friend of a friend earlier this year (2014), who had two ectopic pregnancies and they found endometriosis when they put her through emergency surgery for the ectopic pregnancies.. She described her pain (before diagnosed) exactly the same as how I felt! Painful heavy periods.. Just where you can't move it's that severe.

After hearing her story I was going 'That's exactly the same as me, I must have that'. I went to the doctors and told them to send a referral to the hospital for me to have surgery to see if I have it. When I mentioned it to the doctor she thought it might be a possibility but unlikely.. She sent it off anyway because I said "I'd rather rule it out, the only way to rule it out is surgery.. If it's not that, then at least we know. But I just hope they find something rather then nothing because then I'm back to square one"

I had to have a pre-admission appointment with a doctor at the hospital before they would put me on the waiting list for surgery. I explained all the pain, time frame, how it affects me going to work, etc.. She asked me all sorts of questions. And turned around to me and said "I don't think you have endometriosis, but because it's causing such hardship on your life (taking time off from work cause of the pain) we will do a Laparoscopy to see if we can find anything."

I got called into surgery 2-3 months later, and even had the surgeon say 'It should only take about 30 minutes, cause it's unlikely you have endometriosis, but if we find anything then we will remove it, but you should be able to go home after you wake up and eat/drink something'
I woke up a couple hours later, with a painful stomach that I was in tears (Cause of surgery) And to hear the nurse say 'The surgeons removed moderate/severe Endometriosis and a large cyst off your ovaries, surgery took 1.5/2 hours and you'll probably have to stay in over night."

I was relieved because I finally had an answer to all my pain over the years, and kinda just wanted to say 'I told you so!' So thankfully I ended up getting the surgery done even though the doctor was certain that I had nothing.. They then put me back on the pill and to have my period every three months to reduce the probability of it coming back. I wish that had thought of endometriosis years ago..

Age really doesn't matter, it might be more common for 30+ yr olds but that's only because for us young adults they blame the 'hormones and think we are over reacting!'

If you're going through what I did.. I do advise you to get it checked out!

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