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My Endometriosis Journey

I had chronic low back pain by the age of sixteen. I stopped playing competitive basketball because of it, thinking it was purely mechanical, and that the hard courts were to blame. The pain continued long after I stopped playing. The pain in my back would flare before and during my period, and it was my only predictor of when I was going to get my period. From the time I started my period, it was never regular. I would bleed for six weeks at a time and was taking days off school once a month due to the pain it would cause in my back. At seventeen I was diagnosed with PCOS (polycystic ovarian syndrome), thinking that was the problem. I did Pilates to try and strengthen my body, and while it helped, it wasn’t fixing the fact that the pain would get significantly worse roughly once a month.

It wasn’t until I was nineteen that I was diagnosed with endometriosis. My osteopath told me to look into my symptoms further with my doctor. I was lucky I had a good doctor and gynaecologist, who were happy to perform the surgery needed for the diagnosis. They didn’t find a lot of it, but once it was removed, my back pain went away within a month.

Endometriosis is a condition affecting the female reproductive system. The lining that grows in the uterus that eventually sheds during a period, ends up growing in places other than inside the uterus. It can be found on the outside of the uterus, around fallopian tubes, ovaries, or even on the bladder and bowel. It can get so severe that scar tissue and cysts can form.

And they don’t exactly know why it happens, but they know there is a genetic link. The current hypothesis is that it is due to something called retrograde menstruation; that the blood that would normally flow out of the vagina during a period, also flows back up the fallopian tubes. It can affect fertility, and general quality of life, depending on the severity of the symptoms experienced.

The main symptoms associated with endometriosis are:
Heavy periods
Irregular periods (usually prolonged or shortened cycles)
Pain during or after your period in the abdomen, back or pelvis
Pain with bowel movements or ovulation
Pain with sex

The severity of the endometriosis doesn’t always equate to the pain the person experiences. I know from the two surgeries I have had that I have only had a few spots of it on my uterus and one ovary, but my pain from it is noticeable. And some women don’t know they even have it until they are trying to conceive and have investigations due to having trouble with this.

It can take seven to ten years for women to get their correct diagnosis. Endometriosis is still being studied and understood, and there is a big variation between women in symptoms, that it makes it harder to pick up. Awareness is another thing, many think what they are experiencing is normal.

There is no cure for endometriosis either. They can use medications such as the oral contraceptive pill to help with symptoms and to control severity, and they think that pregnancy can have a positive effect on reducing the severity or even curing some women, but nothing is guaranteed.

Managing your symptoms and pain is the best way to approach your diagnosis. This usually includes some sort of exercise, particularly around strengthening the core muscles. A generally healthy lifestyle with a healthy diet and exercise can assist in managing symptoms.

If you think you have endometriosis, talk to your GP about getting a referral to a gynaecologist. There are some great resources out there that can give you more information, such as Jean Hailes, or Endometriosis Australia. And once you have your diagnosis and treatment plan from your GP and other specialists you may want to consider help from other healthcare practitioners including an osteo or physio.

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