Coming To Terms With My Endometriosis

Since puberty I have, as many other women have, lived with a condition called endometriosis which not only affects the time around my period, but also the way I approach sex and conceive children.

What is endometriosis I hear you ask?

It is a condition linked to retrograde menstruation, where some of the menstrual fluid flows back in to the fallopian tubes instead of being discharged through the vagina. According to Better Health Victoria, almost all women experience retrograde menstruation, but only about 10% of women go on to develop endometriosis, where the endometrium cells contained in the menstrual fluid leak in to the abdominal cavity and attach to wherever they land.

Endometriosis diagram
Image: Endometriosis

How I was diagnosed with endometriosis

It’s not an easy thing to have to deal with, intense pain without any explanation, especially at 12 years old. After enduring years of painful periods and being told that:

‘all girls get pain at that time of month’

I insisted that my mum book me an appointment with our local GP to see if he could shed some light on why I seemed to be in so much pain.

After several visits to the GP and gynaecologist, as well as numerous ultrasounds and blood tests, they came up with a diagnosis of suspected endometriosis. But I would need laparoscopic surgery to confirm the diagnosis. Yay! More pain… It was also awkward as a 15 year old girl to talk to an old man wearing coke bottle glasses and bow tie about periods.

There were plus sides to the surgery though. If it was endometriosis, they would remove all of the adhesions that they could see, so that means there would be no more struggling with bowel movements and a reduction of pain during my periods and ovulation. What I didn’t know pre-op was all of the info related to women’s sexual lifestyles, sex and my ability to conceive children, which I never thought to ask. I was a 15 year old virgin after all.

Ladies and gentlemen, this all took place in the land before time… or at least Wi-Fi. Information wasn’t as accessible as it is these days. The only information that I had was the A4 leaflet that I had been given by my GYN which basically explained what it was that I had and to pretty much not worry because surgery and the pill would probably make it go away.

Endometriosis and how it affects my sexuality and having children

The surgery went off without a hitch and in my post-op consultation with the gynaecologist; he confirmed the diagnosis and gave me all of the information about how it would affect my sex life and reproduction later in life. I kind of did the teenage thing and tuned out not really paying any attention to it. After all, I was 15 and not sexually active.

There were only 2 things that stuck with me from that conversation: One was, due to the severity of my condition, I would only have a 5% chance of conceiving naturally; the other was that sex might be a little painful.

It was almost 10 years later when I got married and started thinking about having kids, that I wished I had paid more attention to the good doc. Thankfully, there was much more information that was readily available on the internet, so I jumped on and started doing some Dr. Google research…

This time it was like information overload. The only answers that this gave me though, was what I already knew: It was going to be difficult to get pregnant naturally and that having a baby would most likely get rid of my endometriosis. With some further research I had found that edometriosis’s global forum for news and information reported:

“The myth that pregnancy cures endometriosis is slowly disappearing. The reality is that pregnancy — like hormonal drug treatments — may temporarily suppress the symptoms of endometriosis but does not eradicate the disease itself. Therefore, symptoms usually recur after the birth of the child.”

So, I did what I could to put off having the baby making conversation with my (then) husband to the point where it became one of the main reasons for our separation a few years later. And for the next 8 years, that’s how I continued to approach my sexual relationships, believing that my chances of getting pregnant naturally were that low that I could not get pregnant. Not the safest, I know, but it was what I was comfortable not having to talk to people about what was going on. Then all of a sudden I met someone that I had an immediate connection with and the universe said ‘here’s your 5% chance’ and I found out that I was pregnant after a few dates. Something that I never thought would be possible.

So, my advice to all ladies who have a medical condition that makes it difficult to conceive children, don’t give up there may not be much of a chance, but there is still a chance. Also, based on personal experience, it is vitally important to have an in depth conversation with your OBGYN, GP or mental healthcare provider about how to explain your condition to your partner and how to express your feelings in regards to how it affects your mental state.

Author: Mia is a consultant from Oh Zone Adult Lifestyle Centres

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