Get all the Tests

I, like many of the other stories on this website, never knew I had endometriosis.

Growing up I had painful, heavy periods and my family wrote it off as "part of being a woman". I never mentioned it to my OBGYN because I thought the pain was normal.
 
One Saturday I was on my way to the grocery store and I had debilitating pain in my stomach. I was two weeks away from my period. I ended up in the emergency room where a transvaginal and normal ultrasound were performed as well as a CT scan. I was sent home with pain meds and asked to consult my OBGYN. I was told that a cyst had burst and I had adenomyosis.

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.

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.

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).