Mum opens up about harrowing journey of being diagnosed with endometriosis

A mum has opened up about the grim reality of being “poked and prodded” by strangers during her harrowing health journey.

Laying down on the examination table, Jessica Ritchie dreaded what was coming next.

“Spread your legs,” her doctor instructed, as a wave of anxiety washed over her.

As a shy young woman, she recalls feeling embarrassed and ashamed at the invasive tests she had to undergo in order to get a proper diagnosis for her pain.

“You get sick of being poked and prodded, you get sick of men touching you,” the 38-year-old mum-of-two told News.com.au.

“Yes, it is for medical reasons. But you still feel bad, it’s horrible to be laying there like that with your legs open.

“It was really confronting being in front of male doctors in that way. They were always professional and try to make you feel comfortable, but you still feel anxious.”

Jessica wants to raise awareness for endometriosis Picture: Supplied

She wants people to understand it is more than “period pain”. Picture: Supplied

As a teenager, Jessica, from Toowoomba, Queensland, experienced what she thought were just ‘typical’ symptoms that she assumed were normal, including intense and sometimes debilitating pain, a bloated stomach almost every day and feeling fatigued all the time.

Seeing multiple different doctors, she was constantly told that everything she was experiencing was just “part of being a woman”.

But deep down she just knew something was not right.

“It’s very frustrating,” the author and brand specialist explained.

“So often these symptoms are passed off as period pain or just part of a woman’s cycle when it’s not.

“I had to go to many different doctors before one took me a bit more seriously. But even when they did further tests and bloods, everything came back clear.”

Growing up, Jessica knew very well the devastating toll that chronic health issues can have on a person.

She witnessed her mum Cathy, now 60, suffer from debilitating pain after being diagnosed with endometriosis – a condition where tissue similar the uterus lining grows in other parts of the body.

Her mother’s struggle reached the point where she once bled out at a work conference in front of all her colleagues and needed to undergo emergency surgery.

It was only then that doctors started thinking that Jessica’s issues could be endometriosis related, as the disease can be genetic – with some studies showing women are at a higher risk for the illness is they have a mother, sister or daughter diagnosed with it.

“Growing up, I knew that mum was in pain. But she hid it well and never complained,” she said.

“I know she didn’t want to scare me. As I got older, I just knew she had cysts on her ovaries and had to go into surgery.

She said the fact her mum also suffered with it has made them even closer. Picture: Supplied

“It wasn’t until my Mum bled out at a work conference in Brisbane in front of her colleagues and rushed to emergency surgery that her surgeon decided to check me out.

“The doctor did an internal ultrasound and that is when I was officially diagnosed with stage 4 endometriosis at 23 years old.”

After her diagnosis, Jessica was warned that she may never be able to conceive and have the children she had always dreamt of.

But thankfully, she managed to fall pregnant twice and is now mum to two beautiful boys Max, 10, and Billy, seven, with her husband Sam.

“I was told that it was highly unlikely that I’d be able to have kids,” she said.

“I have had miscarriages, however I was very lucky to conceive naturally. I am blessed with two beautiful boys.

“If I get the heatpack out my sons know what it means. They are the sweetest and I do try and hide my pain from them, but sometimes that is impossible.

“They will give me a little massage and I try and explain to them what is happening so that they become educated about it too, but not in a fearful manner.”

Jessica said that while she understands it is necessary step in diagnosing certain conditions, the difficult reality of having to undergo multiple invasive gynaecological tests is something that is not often talked about.

Jessica was thankful to be able to have given birth to her two sons. Picture: Supplied

“As a young woman, in my late teens and early twenties, it is quite confronting being in front of male doctors and being poked and prodded.

“A pelvic exam, where a doctor feels inside you with gloved hands for the disease, is one of the quickest ways to diagnose certain conditions.

“It is not pleasant, but I understand it is necessary. I think it is totally normal to feel a bit anxious about it though.”

Jessica said that her endometriosis case was “one of the worst” that Professor Alam Lam in Sydney had ever seen, with the disease spreading to her bowel and bladder.

It was also discovered that she has the “sister disease” of endometriosis called adenomyosis, a condition in which endometrial tissue exists within and grows into the uterine wall.

Her case was one of the worst doctors have ever seen. Picture: Supplied

While there is no cure for the disease, Jessica has undergone complex surgery to help ease her symptoms.

She is also now looking at having a full hysterectomy which will put her into menopause and hopefully ease her debilitating pain she experiences both on her period and throughout the month.

“Even though I know the hysterectomy is not a cure, I can’t wait to go through menopause officially,” she said.

“I know many women dread it. But for me, it will mean an end to the suffering, the fatigue, looking like I am seven months pregnant, and the brain fog associated with the disease.”

Jessica said that although she hates that both she and her mum have had to suffer from endometriosis, she has found comfort in the fact that they have each other for support.

“It was devastating to see my mum go through everything that she did for many years,” she said.

“It made me fearful of my own future too. We have always been incredibly close and it is nice when someone truly understands how it feels and what you are going though.

“I know that mum feels guilty that I have it, even though it’s not her fault.

“I am also very grateful for my husband’s understanding and support throughout all of this.

“He has been on this journey with me and travelled many states to help me receive the best of care.”

Both Jessica and her mum Cathy suffer from the disease. Picture: Supplied

The mum says her husband Sam has always been supportive. Picture: Supplied

She hopes that by raising awareness about endometriosis through her story, more health professionals will be better educated about the disease.

“I’d like to see more funding provided to find better alternatives to hysterectomies and horrible drugs to combat the disease,” she added.

“There needs to be a greater awareness that it is not just ‘period pain’. Health professionals need to be more educated on the disease and also workplaces.

“I’ve personally helped my health immensely through adopting a holistic lifestyle. Things like stretching, meditation, reducing stress and a gluten free dairy free diet have been my saviours.”

Medicare is failing women and it’s About Bloody Time things changed. Around one million suffer from endometriosis. There is no cure. Help is hard to come by and in rural or regional areas, it’s virtually impossible. We are campaigning for longer, Medicare-funded consultations for endometriosis diagnosis and treatment. Read more about the campaign and sign the petition here

About Bloody Time is an editorial campaign by news.com.au that been developed in collaboration with scientists recommended by the Australian Science Media Centre, and with the support of a grant from the Walkley Foundation’s META Public Interest Journalism fund.