Have hope 

In telling my personal endometriosis story, I would like to give hope to young women suffering from endometriosis.

I am now 56 years old, but when I was 22 years of age, I had been suffering severely painful and debilitating periods for some time. After being married at 25 and not being able to fall pregnant by the time I turned 26, my local GP began investigative procedures. I was referred to a gynaecologist/obstetrician (who specialised in infertility) who, after performing a simple laparoscopy (keyhole surgery), diagnosed widespread endometriosis and multiple adhesions on my ovaries, fallopian tubes, and bowel.

Pain free – for the first time in years

“No it can’t be endometriosis, you are too young, you are only 13”, my surgeon/doctor told me (who wasn’t trained in gynecology). My intuition told me otherwise. According to the doctor, I was “psychologically creating the pain” because I was going through puberty. I suffered mystifying pain that would see me doubled up for seven days PRIOR to my menstrual period and would settle the day it started.

Don’t put off investigative procedures without good reason

Moving forward 

I knew what endometriosis was at a very early age, as my mother's cousin was diagnosed at the age of 19. At nine years of age, I barely understood this frightening condition, but it remained throughout my teenage years, a source of extreme fear.

At the unfortunate age of 10 years old, my periods started. Right from the start I experienced problems. The pain was so severe that I stayed home, curled in bed for three days a month. From the age of 12, I began fainting around ovulation time. Buckled over with pain, I would black out, often coming to with grazes and bruises - I even split my head open one time.

A second opinion 

I am 28 years old and I was officially diagnosed with endometriosis one month ago. I have suffered painful periods, heavy periods and frequent cycles for as long as I can remember, but in December I started to have stabbing pain, and trouble sitting down. I was referred to a gynaecologist who scheduled a laparoscopy and confirmed what I always knew.

A name at last 

Like many women, my periods were never a pleasant experience. At times I would suffer mild period pain but at other times, the pain was incredible. I consulted my doctor when I was 20 and was diagnosed with irritable bowel syndrome, then later, spastic colon.

Investigate further 

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.

Endometriosis: A Conclusive Diagnosis

"It's endometriosis", said my surgeon, "It's widespread, but it's not deep". As I lay in the hospital recovery room in a state of anaesthetic-induced delirium five years ago, after my first laparoscopy, I breathed a sigh of relief: I had a disease and a ‘name' for a series of symptoms that I had tolerated for at least six years. And, finally, I had an explanation for my chronic pelvic pain, and debilitating menstrual periods.

Not just period pain 

I first started to notice that something was wrong when I was about 19 years of age. I would get severe pain on my left side and sometimes I would not be able to breathe properly or even stand up. As the years went on it got worse, I couldn't eat for three days, my body would react differently every cycle, my mood changes were horrendous and I just could not function.

One day I was home with mum and dad when the pain started. They thought I was making it up until I climbed on the kitchen table gasping for air. They drove me straight to the hospital where a doctor diagnosed endometriosis. I was 21 when I had my first laparoscopy. The doctors were horrified when they opened me up and found cysts the size of oranges on both my ovaries, along with other endometrial tissues around my organs, including the liver, bowel and stomach.

Content Updated May 19, 2008

Don't give up hope

My life with endometriosis began when I started high school, though I didn't know it.  Some of my other friends had been having pain when they got their periods, so I had just thought that my pain was normal. What I hadn't realised was that mine was actually 10 times more severe than theirs.  After high school, my pain began to ease.  It wasn't until I was 28 that it returned with a vengeance. The pain was crippling. I would huddle up in bed for days unable to go to work. 

I was so annoyed and upset one day that I ended up going to my local GP who referred me to a Gynaecologist. She was wonderful. One scan and there it was. Endometriosis and fibroids. We arranged to have a laparoscopy to clean it all out.

Fertility and emotional wellbeing 

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.

Hysterectomy

Three years after my laparoscopic diagnosis of endometriosis, an endometrial ablation and three consecutive medical treatments, I was suffering from the side effects of hormonal treatments, and increased pain on the left side of my pelvis. A second laparoscopy revealed adhesions - my left ovary and uterus had developed a ‘mutual attraction’ to one another! Adenomyosis was also suspected - a discovery I made four months on in consultation with my GP (I read my operation notes).