‘The pain is excruciating’: Stories of women living with endometriosis

The first time I knew something was wrong was in Venice, with my family. I’d had a stomach ache all day, unlike any I’d experienced before. I thought that it might be food poisoning or a stomach ulcer.

The pain was dull, constant and persistent. I tried food, sleep, pain killers, and I even tried an Aperol Spritz. Nevertheless, I ended up in the foetal position on my bed in the hotel room, wishing the pain away.

That was six years ago. It has taken me that long to get the diagnosis; I have endometriosis.

Endometriosis is a disorder where tissue, similar to the tissue that forms the lining of your uterus, grows outside of your uterine cavity, causing extreme pain and hormonal imbalance.

It turns out that one in nine Australian women live with this disease – a disease I knew nothing about.

Although excruciating and crippling, the amount of times I was told by a health professional that my experience is “normal” astounds me. I have taken countless pain medications, tried various methods of contraception, changed my diet and my lifestyle, yet the pain has only ever increased.

I would call into work sick, feeling guilty and weak. I would cancel on friends, family and events. Doctors would tell me that hormones can be “temperamental”; that they “vary depending on mood”.

I eventually found a doctor who had experience in women’s health and believed in my pain, which was a relief.

Being a strong, independent, working woman, I found it difficult to have my life so affected by something I’d been taught nothing about, and felt I had no control over.

But I know I’m not alone in this, as many other women battle through the same condition.

Here are stories of two other women and their struggle with endometriosis:

‘Endometriosis impacts so many areas of my life’: Halle, 22

Halle always knew that something wasn’t right about her period pain.

“From my very first period, I had cramps so painful that they caused me to feel dizzy and throw up. It was isolating because I didn’t understand how other girls were dealing with their periods so silently, while mine were so debilitating,” Halle said.

“After having sex for the first time, I was in such pain that I couldn’t leave bed for two days and I experienced a huge amount of blood loss. When I told my friends and family, they said it was just ‘part of being a woman’.”

Halle was 13 years old when the pain began. She felt completely clueless as to what was going on inside her body, how long it would last or if it was, in fact, just normal.

During her Year 12 exams, the pain was so bad she ended up in hospital. Even then, she was told it was “just hormones”.

“I was mad with myself for being in pain. There were so many people telling me that what I was going through was what every woman goes through, so I didn’t understand why I had to sacrifice so much. It felt – and still does feel – like this overwhelming unfairness,” she said.

Halle’s experience with doctors hasn’t been the best, and she endured 10 surgeries over four years.

“I was told by five different doctors that my pain was caused by the stress of exams and that I probably didn’t have enough fibre in my diet. One doctor in the ED gave me meds for a kidney infection, even though my tests came back negative.

“During my first surgery, the surgeon wasn’t experienced enough to remove the amount of diseased tissue I had, which resulted in internal blisters. My organs began to stick together, and I now have nerve damage.

“It took three different surgeons over four months to remove all the diseased tissue and separate my organs. The scars all over my body make me anxious.”

Halle still bleeds a lot after sex, which has a huge impact on her sex life and is a concern because of safety and health reasons, as well as the anxiety she experiences.

“I think many people assume that endometriosis just happens once a month, during your period, and is short-lived,” she said.

“The reality is that it is a disease that impacts so many areas of your life. There are many unpleasant side effects to medications, surgeries, an inability to do physical things, and just the general pain, that never truly goes away.”

‘The pain was horrific’: Tilly, 25

When Tilly was 14 her periods started to get more and more painful. She told her parents and friends, but they brushed it off.

“On the days of my period, I had trouble walking to school. The pain in my abdomen and knees were so horrific that often I’d only make it halfway to school and have to call my mum to pick me up and take me home,” she said.

Tilly’s pain evolved suddenly – at first it was extreme cramps, lower back pain, and so much blood that tampons weren’t sufficient. She would wear two pairs of undies with tights on top, because she was worried she might leak.

“School was difficult because the first two days of your period with endometriosis really needs to be spent in bed. But because I had no diagnosis, I just had to suck it up. It’s the same now with work and life. Endometriosis still isn’t something that people take seriously enough for you to stay in bed,” she said.

Tilly is now 25 and has never experienced any pain worse than endometriosis. Panadol never works, nor does Nurofen, or Naprogesic, or any of the other over-the-counter medication for period pain.

Mid-way through high school, she started taking a contraceptive pill. The pill improved her endometriosis pain, but resulted in depression, so she decided to stop taking it when she was 20.

Tilly’s endometriosis pain came back, and it got worse. Her doctor casually assessed that she “might have endometriosis” and offered for her to get an ultrasound, if she wanted one. The doctor never elaborated on how badly endometriosis could affect her quality of life or her ability to have children.

“Eventually, I ended up in hospital, which is where I got diagnosed,” she said.

“Currently, I’m at a bit of a stalemate. I’m back on the pill… and the depression isn’t as prominent. I’m thankful not to get my period, because I am genuinely terrified of how my body would react to getting it again, however I really don’t want to be on a medication that alters my hormones so much.

“I had Zoladex injected into me about two weeks ago, to stop the pain I’m still getting. There isn’t much information about it and the gynaecologist didn’t tell me a whole lot either, but turns out now I’m in medically-induced menopause.

“I feel conflicted because I don’t want to do too many synthetic things to my body but at the same time, I don’t know how much longer I can endure 3am trips to the toilet, feeling like I’m going to die.”

How to find help for endometriosis

I spoke to a lot of women with endometriosis and they all have similar stories. Many of them shared the view that there is a lack of education on women’s health taught in schools, a lack of accessibility to affordable women’s health professionals, and a lack of awareness through the media. They also said there is a huge stigma of shame attached to women overdramatising their pain.

To move forward, we need to be the driving force. If you are experiencing pain, don’t hesitate to research for yourself and talk to health professionals. Get a second opinion – and a third, fourth, and fifth if needed.

If you’re looking for help with endometriosis, here are some suggestions:

• Consider getting a laparoscopy. The procedure is low-risk, painless and may help you move forward with a diagnosis
• Try Ovira, a device that has helped women with period pain and endometriosis
• Read All About Annie, an inspiring blog by Annie, who lives with endometriosis
• Watch the short film Endo Girl, which aims to raise awareness of endometriosis and features Halle (interviewed above)
• Find support in Facebook groups Endometriosis Support Group and Australian Women with Endometriosis Support Group.