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Personal stories should be brief and to the point. All stories will be put through the Jean Hailes Foundation for Women’s Health editorial process to ensure that they are suitable to be published online. If the story has been edited significantly in this process, the author will be notified for final approval before it goes online.
When I was diagnosed with endometriosis it came as quite a shock. I had regular periods and did not suffer significantly from period pain, so the diagnosis of stage 4 endometriosis following surgery to remove a cyst from one of my ovaries was quite unexpected.
What followed for me was a whirlwind of experiences and emotions, especially as I was informed that this could affect my fertility. I was engaged and looking forward to getting married and having children, but the advice from my specialist to start trying for a family immediately was something neither my partner nor I were ready for. I was only thirty and I had thought we still had plenty of time to decide when to have children.
I became frustrated towards my fiancé for not being ready to move our plans forward and towards friends who were dismissive and inattentive towards their children. I was angry at the ‘unfairness’ of the situation and found myself becoming bitter and depressed. I finally sought help through a counsellor who was a tremendous support in helping me identify and deal with the thoughts that were consuming my days and affecting my relationships. I cannot emphasise enough the importance of working with a professional to help address the emotional impact of this condition. I only wish that I had had the courage to seek this help earlier.
Heather's story
My endometriosis began as a teenager, though I didn't know
it at the time. Throughout secondary school, I would have one day off a month
because of cramps. I went to the doctor, but was told I was just one of those
young women who happened to get bad cramps, and that it was manageable with
over-the-counter treatments.
As the years went on, I can remember feeling as though I was
some kind of hypochondriac. Having one day off a month meant I used up all my
sick days every year, and would have to take unpaid or annual leave when I was
'really' sick. I lied about why I couldn't come to work - no one would believe my
period pain was bad enough to warrant a sick day. But the truth was that I was
doubled over in severe pain. The pain would radiate down my thighs and up my
back, and I had diarrhoea and bowel problems.
After hearing the same response to my period pain from
several doctors, I was resigned to the fact that pain was something I just had
to live with. But as the years went by, the pain became worse and the
over-the-counter treatments weren't working anymore. The pain lasted longer
than one day, and the bowel troubles extended throughout the month.
The bowel problems brought me back to the doctor, and after
much investigation, my new GP suggested I could have endometriosis. Finally I
had something to explain all this! She referred me to a gynaecologist, who put
me on the waiting list for a laparoscopy.
The surgery revealed extensive lesions, particularly on my
left side. The reason I had bowel problems was because the endo had 'fused' my
uterus to my bowel. No wonder I had been in so much pain! The removal of the
lesions led to some pain relief, and within a few months I was able to work on
the first day of my period!
My advice to all women who experience debilitating period
pain is to insist on further investigation. I wish I hadn't accepted the lack
of investigation from GPs over the years and I wish I'd realised earlier that
it's NOT NORMAL to be in that much pain. I am not a hypochondriac, and I
don't just have a 'lower pain threshold' than other women. I have
endometriosis. It is serious, and it's real.
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