“When I was diagnosed with Endometriosis, I felt like a complete fool.”

Video by Mamamia Women's Network.

If you’re suffering from Endometriosis or experiencing symptoms, seek medical advice from your doctor for diagnosis and treatment options.

The first time I ever heard of Endometriosis was back in the mid 1980s. I worked in retail, alongside with a large group of girls, most of us aged in our late teens. One of my co-workers arrived at work one day with the most shocking news. I will never forget our conversation. She told me she was booked in for a hysterectomy next week and that she would be off work for a while.

Through her tears, she told us the disease she had was called endometriosis and that it caused her to bleed two weeks out of the month, live in almost constant pain and that she could never have children. She was 18 years old. Her situation was so unbelievably cruel, but I now knew why she appeared so ‘distant’ and ‘serious’ at work.

After I left this job, I lost touch with my work colleague, but I certainly never forgot the name of her disease.

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As I got older and entered my mid-twenties, I came across more and more women who had endo. Sometimes the stories I would hear would be of ‘trying for a baby’ then discovering they have endometriosis. I would always think to myself, “how awful and sad. Glad I don’t have this horrid disease”.

By the time I was in my late twenties, I was still looking to find my Mr Right (or was that ‘Mr Right now because I want children and my clock was ticking). I was definitely mindful of my age and how this could affect my fertility. The person who I eventually decided was my Mr Right, was not quite ready to settled down and start a family. He was only twenty-three, but, I’ve always been a risk-taker and I gambled on us having a happy ending. Well….

We did not to start trying for a family until 2003. By this time I was 35 and in complete panic mode over getting things moving if there were any obvious fertility concerns. After trying for six months, I took us off to the GP to request some investigations.

When I heard other's endo stories, I would always think to myself, 'how awful and sad. Glad I don’t have this horrid disease'." (Image: Supplied)

A referral for a laparoscopy came back with results I was not expecting, “you have mild endometriosis”.

I broke down, but at the same time, I thought to myself, “You complete fool!” I had been experiencing symptoms for twenty years (irritable bowel, severe PMS, UTIs, mid-cycle pain, ovarian cysts, back pain and groin pain) but not once had I imagined I had endo. I just thought it was normal to experience these symptoms because let’s face it, we can’t be in another person’s body to compare menstrual pain.

After discovering the endo, we didn’t really go down the path we should have with conception.

To be honest, the female surgeon who diagnosed the disease didn’t make a very big issue over our plans to try for children. She just commented that it would be “a bit harder to conceive” and I took this as meaning we don’t need further intervention.

falling pregnant with endometriosis
Bernie, her husband and son. Source: provided.

We had four miscarriages and then a pregnancy which we terminated as it was a trisomy18. It was so sad for me and my husband but that baby probably wouldn’t have survived its birth.

When we approached an IVF clinic in 2008 I was about to turn 40.

Our IVF specialist was the most amazing doctor. He sent me off for another laparoscopy to remove the endo and gave us hope that we could achieve a viable pregnancy. We were successful getting pregnant (with twins), but this pregnancy sadly only lasted seven weeks.

Eventually, we decided IVF wasn’t worth continuing with as we could no longer afford it and we couldn’t face any more heartbreak.

falling pregnant with endometriosis
"We tend to just ‘put up with pain’ because we are either told we should or we feel too embarrassed to discuss it with anyone." (Image: Supplied)

By the time 2010 rolled around we had experienced six failed pregnancies over seven years.

In hindsight, we should have seen a specialist earlier than we did, but I’m sure you understand that IVF is an expensive option and, after all, we were achieving pregnancies. Was the endo to blame for all of the early miscarriages? I’d love to know! I’m sure my maternal age played a part, but it certainly makes sense to me that Endometriosis was an important factor in my inability to maintain pregnancy.

But in early 2010, I fell pregnant – NATURALLY at 41 years of age! I had an incredibly easy pregnancy with no pain and a fairly uncomplicated birth.

Our beautiful boy is now six years old and we feel so blessed to have been able to achieve our goal of having a family.

I do have a suggestion for anyone reading this wondering, 'Did you do anything different?'. I was undergoing acupuncture for at least three years before falling pregnant and I was definitely leading a healthier lifestyle. I cut back on alcohol, took up regular exercise and had a healthier diet.

My personal aim now is to teach our son about menstruation and he already knows what it means when I am ‘having my period’. I do wish that I could be more vocal in my endeavours to educate people on endometriosis, as I recently experienced groin pain, but the doctor said it was ‘muscle’ pain.

I look back on my life and how much of it could have been different if there was just better education on menstruation and girls who experience symptoms of endometriosis could be diagnosed earlier.

We tend to just ‘put up with pain’ because we are either told we should or we feel too embarrassed to discuss it with anyone. It’s no wonder we suffer in silence.

But enough! Let’s make the ‘Endo’ this now.

 

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Mamamia's Endo Awareness Week, curated by Founder of EndoActive Syl Freedman, shines a light on a disease suffered by one in 10 Australian women. To read more from Endo Awareness Week, click here. If you'd like to find out more information on Endometriosis, Syl's story or EndoActive, visit endoactive.org.au and keep up to date on their Facebook page.

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