Explaining Endo: Sarah's Story
By Sarah Kay
In 2020 QENDO began formally offering our support and education services in New Zealand, after many years of connecting with our friends across the water. Working with our colleagues and listening to their stories brings to light the challenges and barriers those affected by endometriosis, adenomyosis, PCOS and infertility in NZ, and how much work we can do together to improve the experiences of these chronic health warriors. One such warrior is Sarah, who has graciously shared her story with us for this blog. To launch our 2021 blog season, we’re going back to basics and #ExplainingEndo.
Sarah’s Story
From the age of 13 I had irregular periods, pelvic pain, excruciating period pain and cramps as well as very low moods.
I saw my GP who was very quick to put me on birth control to regulate my periods and told me that periods are often painful, considering the changes that happen to your body during that time so didn't really seem to concerned about it.
Although I was on birth control i still had very irregular periods, and one situation I can remember not having a period for months, then when I was on school camp and unprepared, I got my period and it was heavy and painful.
I eventually went for an ultrasound but nothing was found so they kept me on birth control thinking I was just unlucky with my periods.
Eventually the pain got more frequent and not just at the time of my periods. I ended up having to give up dancing which I did for 15 years, and stop studying nursing as my pain, mental health and general health got so bad.
I pushed for more answers for years, until I found a GP who was willing to listen. She sent me to a gynaecologist in Hamilton, where she believed I had classic symptoms and signs of Endometriosis.
I was diagnosed with stage 2-3 Endometriosis and Endosalpingiosis in 2017, at age 21 ,after a laparoscopy, 8 years after onset of symptoms.
Since then I have also been diagnosed with IBS, Probable PCOS, Syncope and am waiting diagnosis of fibromyalgia. I have also developed PTSD, depression and anxiety from the years of lack of diagnosis and being told that there was nothing wrong, obviously that was not the case.
I strongly believe that if I had a diagnosis earlier I may have been able to reduce the harm that was caused, may have had a lower stage of Endometriosis and potentially have less subsequent conditions as a result.
Back to Basics: What Is Endometriosis?
At QENDO we spend a lot of time talking about endo, but to start the year, we thought it was time for a quick refresher.
Endometriosis is a condition where tissue similar to the lining of the uterus grows in other parts of the body. While this tissue is commonly found in the pelvis, including the ovaries, Fallopian tubes and pouch of Douglas, there have been cases of endometriosis found in almost every organ in the body. Endometriosis is not the endometrium, and endometriosis lesions have key differences to the endometrium that can be seen under a microscope. It is not simply a menstrual disease, it is a whole body disease. One in ten people who currently or previously have had a uterus, have endometriosis. Some people can experience very severe pain, while others may not experience pain at all. Everyone's endometriosis experience is different.
There is currently a significant delay between onset of symptoms and diagnosis, which can have an impact on health, relationships, work and productivity. Pain that interferes with your everyday life is not normal and needs to be investigated. The symptoms of endometriosis may include, but are not limited to:
Pelvic pain, including severe period pain
Heavy menstrual bleeding
Pain with sex
Pain with urination or bowel movement
Nausea and/or vomiting
Fatigue
Gastrointestinal symptoms
The gold standard for confirmation and treatment of endometriosis is a laparoscopy performed by an endometriosis excision specialist, in Australia this means a gynaecologist who has undergone advanced training in minimally invasive surgery through AGES (or international equivalent). You can find a specialist near you using our QENDO referral list here. Think of an endometriosis lesion like a weed - the whole thing, including the root below needs to be cut out to reduce the chance the weed will grow back - this is an excision surgery. If you have endometriosis on your bowel, bladder, ureters, or thoracic cavity, your surgeon may also collaborate with other specialist surgeons to ensure safe removal of disease.
Ultrasound may play a role in diagnosis, in experienced hands, for example a tertiary scanner, an ultrasound can certainly suggest the diagnosis or identify features such as ovarian endometriomas, BUT, a clear ultrasound does not mean you do not have endometriosis. You can always seek a second opinion.
It’s important to establish a set of management strategies tailored to your condition, and this may include a multidisciplinary team, including:
Gynaecologist
General Practitioner
Pain Specialist
Pelvic Physiotherapist
Exercise Physiologist
Psychologist/Counsellor
Dietician/Nutritionist
Naturopath
Osteopath
If you think you may have endometriosis, or have already received a diagnosis and are struggling with your symptoms, know that you are not alone. Please reach out to your GP or gynaecologist to get the care that you need. We understand the physical, emotional and financial toll endometriosis can have on a person, and are here to help. QENDO is here to support you through our regional meet ups, online support groups, our 24/7 Support Line 1800 ASK QENDO, and provide education through our in person and online events. You can find our endometriosis brochure here.
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