• Better treatment and diagnostic options need to be available for women suffering infertility and endometriosis. (Getty Images) (Moment RF)
Women should not have to under the knife and undergo surgery to find out if they have endometriosis.
By
Lucille Wong

20 Aug 2018 - 9:14 AM  UPDATED 20 Aug 2018 - 9:16 AM

Two years ago, my husband and I decided to have a baby. We were newly weds: hopeful and optimistic. As a then 35-year old woman, I was aware of the decline in my fertility. After six months of trying, I made our first medical appointment to seek help.

I was subjected to endless blood tests and pelvic scans, none of which returned any answers. Then followed hormone injections and alternative medicine. None of that returned any results.

We were on the doorstep of IVF when our fertility specialist presented us with the option of a laparoscopy, a type of keyhole surgery performed under general anaesthetic. The procedure would look for endometriosis which could be treated while I was still unconscious.

There was no way to diagnose endo for sure without this surgery. The extent to which removing endo could improve fertility was unknown but seen as “likely” to help. It would be $2000 out of pocket and the public wait list for elective surgery was 12 months. Just in case I had forgotten, my biological clock was ticking.

The laparoscopy could present nothing and it would only delay pregnancy for recovery time. There were the usual risks (infections, allergic reactions, damage to vital organs) associated with any operation.

The alternative was to skip surgery and go straight to IVF. That meant police checks, daily needles, an upfront payment of $10,000 and for someone my age, an estimated 30 per cent chance of success.

As IVF could work in women with endometriosis, the doctor suggested IVF as the next step. IVF, she argued was diagnostic too as it examined egg and sperm under the microscope and could result in a baby.

Her advice made some sense but I couldn’t reconcile starting IVF without addressing all underlying health concerns. If IVF didn’t work, I would always wonder if it was the endo I left untreated.

It was costly and with risks, but my partner and I chose surgery as a way of seeking information. We could then proceed to IVF with confidence if there was no endometriosis.

Some weeks later, I woke up with a confirmed diagnosis of “severe” or stage 4 endometriosis along the left side of my pelvic wall.

For women with endometriosis, a condition where cells inside the uterus grows on the outside, the two most common symptoms are pain and infertility.

I feel for the women whose symptom is pain. I have friends who have suffered years of debilitating period pain only to be largely ignored by the medical profession. I know of women who have undergone multiple, invasive surgeries only to gain temporary pain relief. Thankfully, I have not experienced that kind of endo pain.

My surgeon was surprised I had not shown more symptoms of period pain. Although he had expected less endo, he was able to remove most of it.  The plan then was to “try” unassisted for another three months.

When my period came back six weeks later, I was in excruciating pain. The next three periods were on time, lighter with no physical pain. Unfortunately, periods meant more unsuccessful attempts at pregnancy and once again, we were back on the doorstep of IVF.

My partner and I were physically, mentally and emotionally exhausted. In part, the exhaustion comes with making decisions based on assumptions.

Last month, there was a glimmer of hope. The government announced its first national action plan for endometriosis. Health Minister Greg Hunt acknowledged the “historic failures” in diagnostic delays, poor clinical care and general low level of understanding of the disease and pledged $2.5 million for research into better diagnosis, treatment options and ultimately a cure.

Improving fertility isn’t directly linked to the outcomes of the plan. But better diagnostic options would mean women don’t have to go under the knife to look for a disease that they may not have. Early detection and better treatment and research could spare couples the harrowing financial and emotional burden of IVF.

Most importantly it means women and couples won’t have to make impossible decisions during what is already a very traumatic and vulnerable time of their lives.

Lucille Wong is a freelance writer. 

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