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“No one should have to suffer for this long,” One Woman Shares Her Long and Painful Road to Treatment for Endometriosis

After being dismissed by doctor after doctor, Rachel Griggs was left to advocate for herself in the midst of debilitating pain. This is her story.

For decades, Rachel, 45, suffered from agonising period pain. Her doctors, however, attempted to convince her that all of this was a “normal” part of being a woman.

“I was 14 when I first got my period and experienced the severe pain that I thought at the time was normal I remember rolling around on the floor in foetal position in so much pain and my mum told me to get ready and go to school,” she says.

Finally, Rachel was about to have a cyst removed when, yet again, she found herself being dismissed and gaslit about her symptoms.

“In 2022 I had a large cyst form that I thought was the cause of my pain again. I was prepped and ready for surgery when the surgeon asked me if I really thought removing the cyst would work and that pain is normal,” she says.

But there’s nothing normal about chronic, debilitating pain – Rachel knew this, and it’s why she kept fighting to be heard. 

“I said, no, I need the surgery so you can figure out what is happening,” she says. “I woke up after surgery not knowing what had gone on, only to find out I had been in surgery for 5 1/2 hours. The Endo specialist came and saw me the next morning and told me that I had endometriosis and that it was a long surgery and that the endo was everywhere.

“They got it all and she told me that it’s more than likely I have had it for about 20 years.”

Research suggests around 10–15% of all women may have endometriosis, significantly reducing their quality of life. Unfortunately, on average it takes between 4 and 11 years for people to receive their diagnosis, with up to 6 in 10 cases left undiagnosed. Rachel is one of the many who had to wait decades to get that diagnosis, despite seeking medical support for her severe symptoms.

“I believe so many women have misdiagnosis over the years and that doctors do not take us seriously when we complain about the pain and how it affects us,” the 45-year-old says.

Endometriosis is a chronic condition that involves the growth of cells similar to those found in the uterus’ lining start to grow in other areas of the pelvis – this can include the bowel, bladder and ovaries. Though the cause of the condition hasn’t been pinned down yet, there are a number of contributing factors associated with endometriosis. Abdominal pain is one of the most common symptoms of endometriosis – it may be dull or sharp, and for some it feels like severe period cramps and is known to worsen with time.

Because endometriosis can cause cells similar to those in the uterine lining to grow outside the uterus, the nearby pelvic area is one of the most commonly affected. The disease can also result in bleeding into the pelvic region, along with swelling and growths that can lead to scar tissue building up and the blocking of fallopian tubes. This then results in debilitating pain, along with fertility issues. Many find the pain so severe that over-the-counter medication makes little to no difference. 

Prior to finally receiving her diagnosis for endometriosis, Rachel had struggled with a number of Band-Aid solutions for her pain.

“Over the past 31 years I have been diagnosed with PCOS where I have had a surgery to remove a 7cm cyst in my early 20s,” she says. “From there, I was on multiple different birth control to help with the painful periods.  At first it regulated things but my periods were still very heavy and still very painful.  Back then, you would take some Panadol and keep on going.

“I believe my pain over the past 30 years was never taken seriously and all doctors said that pain is normal.  This sort of pain is not normal and no one should have to suffer for this long.”

After a medical appointment on May 5th, Rachel once again came face to face with dismissal from her specialist as she was told her endometriosis appeared to be back and her ovaries had adhered to her bowel.

“Again, i was told that I should do pelvic floor exercises to help with the pain,” she says. “The specialist went to talk to her boss and they came back to tell me my case is too complicated and they now need to send me to another hospital to review.  “I ended up in tears, thinking there is NEVER going to be an end to this.” 

Rachel reveals the difficulty of managing pain while juggling other life responsibilities, sharing that her partner remains one of her biggest supporters.

“I am on the edge of severe depression again after my endo has returned and that I now have to have another wait period to see yet another specialist.  It affects my work, my love life, my day-to-day productivity and especially my partner,” she says. “I never wanted to go into a relationship where someone else has to endure my pain as well. My partner is the most supportive man I know, and I am so grateful to have him in my life.

“When I am laying awake in pain at 2am in the morning, he rubs my back until my pain relief kicks in and I fall asleep. He is my rock and has been by my side since my diagnosis and through my first surgery." 

Rachel says one of the ways forward is for doctors and medical professionals to listen to women when they say they’re in pain, rather than normalising these debilitating symptoms and letting the disease progress without diagnosis or treatment. 

“People need to be made aware and doctors need to take this seriously and listen to us more.  Don't dismiss our pain as "normal" because it is not normal,” she says. “I used to be on pain killers 3 weeks out of a month when I had my period.  “Now I don't have my period, I still have the severe pain and I am now being passed around to another hospital in the hope they can help.” 

Head on over to Endometriosis Australia for more information on the condition and how to support its research and treatment.

1 Response

Elle

Elle

November 24, 2023

Your story sounds very familiar. Doctors in Australia especially in the public the system do not have the expertise or equipment to do the gold standard surgery for endometriosis let alone if other organs are involved. Gaslighting is a huge problem and keeps happening even after being diagnosed! I understand the stress and hurt that has been part of your journey as I’m still on the journey too!

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