Endometriosis is a chronic whole-body inflammatory disease that affects approximately 1 in 7 Australian women or those assigned female at birth (AFAB). Endometriosis lesions are marked by cells that are similar to the endometrium, but are not cells that have come directly from the endometrium (contrary to outdated definitions). Whilst endometriosis is most commonly associated with the female pelvic area (e.g. uterus and ovaries), it can in fact be found on the bowels, diaphragm, spinal cord and almost anywhere in the body. Severe painful periods are a hallmark symptom of endometriosis, however 20-40% of people with the disease are asymptomatic.
Living with endometriosis can be painful, emotional and exhausting (as someone who experienced all of the above, I get it). But with the right people, resources and healthcare in our corner, we can find ways to live life again.
Read on as I explain all of the ins-and-outs of endometriosis including signs and symptoms, statistics, getting diagnosed, misconceptions and how you can advocate for yourself to get the right support.
Common signs and symptoms
Whilst pain is the most common symptom, there are other lesser talked-about symptoms that may indicate endometriosis. I’ve listed the most common below, however some people may have endo without experiencing any of these symptoms at all.
- Severe dysmenorrhoea - 60-80%
- Painful ovulation - sharp pulsating pain or cramping
- Painful sex
- Painful bowel movements
- Sharp, shooting rectum pain with periods
- Lower back pain
- Severe bloating
- Sciatica
- Nausea and vomiting (from the pain)
- Infertility
- Disrupted bowel movements (constipation and/or diarrhoea)
Endometriosis statistics
- Affects 1 in 7 to 1 in 9 women and AFABs
- Affects at least 830,000 Australians
- It takes an average 6.5 years to be diagnosed (although this can vary depending on accessibility to specialists)
- 35-50% of endo sufferers experience fertility challenges
Australian Institute of Health and Welfare
Endometriosis types
Endometriosis comes in varying presentations including different types, colours, sizes and severity.
The three key types include:
- Endometrioma: commonly called chocolate cysts, these are dark-brown fluid-filled cysts that grow specifically on or near the ovaries
- Superficial peritoneal lesion: this is the most common type of endometriosis marked by small shallow lesions found on the membrane that lines the abdominal cavity (peritoneum).
- Deep infiltrating endometriosis: these are more invasive lesions that grow under the peritoneum. Also known as DIE, this type of endo can involve other organs such as bowels, bladder, diaphragm and may proliferate into adhesions. DIE affects 1-5 per cent of endo sufferers.
Endometriosis staging
Endometriosis is classified into four different stages based on size, location and organ involvement. It’s important to note however that staging doesn’t always correlate with pain. Someone with stage one may have significant dysmenorrhoea and pain with sex, whereas someone with stage four (severe) may not have any pain at all. Oftentimes stage four may only be discovered upon an investigative laparoscopy or specialised imaging for other reasons such as infertility.
What about adenomyosis?
Adenomyosis is another painful condition that shares many similar symptoms to endometriosis and some people have both. However, adenomyosis only affects the uterus and is marked by endometrial cells that grow within the muscle wall of the uterus (the myometrium). Adenomyosis may also be defined as a “bulky uterus” on an ultrasound. A key difference with adenomyosis is that it’s often more likely to cause heavy menstrual bleeds. This is why if you’ve been experiencing heavy bleeds you should see your GP for a specialised ultrasound at a female health centre that specialises in conditions like endometriosis and adenomyosis.
Endo myths and misconceptions
Endo research has been lacking until recent times, thus many outdated beliefs still circulate. This list of myths and misconceptions dispels the most common.
- Pain doesn’t always correlate with staging
- It’s not a hormonal condition
- It’s not caused by "oestrogen dominance"
- It’s not caused by retrograde menstruation
- It is not the endometrium (it's endometrial-like)
- A hysterectomy will not cure endo
- Pregnancy doesn't cure endo
- Hormonal medications can’t cure or stop endo
- Endo does not cause irregular periods
- An ultrasound cannot rule out endo
How is endometriosis diagnosed?
The gold standard to correctly identify and diagnose endometriosis still remains to be a key-hole abdominal procedure called a laparoscopy. Typically the endo lesions will also be removed during this procedure.
However, other steps will occur before the surgery including:
- A thorough case-history through your physician
- A transvaginal ultrasound (preferably through a women’s health centre who specialise in female reproductive disorders as opposed to general sonography clinics)
- An MRI
- A referral to an endometriosis specialist (a gynaecologist with further laparoscopic training and experience in endometriosis)
The most important things to know when seeking a diagnosis:
- Not all types of endometriosis can be detected on an ultrasound; a “normal” ultrasound report does not rule out endometriosis
- An MRI can detect endometriosis of the bladder, ureters and rectosigmoid (where an ultrasound might not)
- Do your research on endometriosis specialists in your area before seeing your GP for a referral. I have an extensive list of Australia’s top endo excision surgeons here
Surgery types: excision vs ablation and why it matters
The gold-standard endometriosis specialist to look for is what’s commonly termed an “advanced trained excision surgeon in endometriosis”. Another key sign to look for in Australia and New Zealand is checking that the surgeon is a member of AGES (Australasian Gynaecological Endoscopy and Surgery society).
The reason why this matters is because not all gynaecologists are experienced in correctly identifying and removing all forms of endometriosis, thus some lesions may go missed (this happened to me when I was 21). Additionally, it’s imperative that your surgeon uses excision as opposed to ablation. To think of it in simple terms, ablation would be like burning off a mole, whereas excision would be where the whole mole and its root-system is removed entirely. Similarly, if endometriosis lesions are only burnt off at the surface, the stem-cells still remain which will allow it to grow back. A skilled excision surgeon will ensure all of the endometriosis is removed, meaning that it’s unable to grow back.
There are a lot of misconceptions around whether surgery is helpful or a hindrance and the answer all lies within the skill of the surgeon.
Will surgery fix the pain?
A key motivating factor for having surgery is the hope that it will fix the painful symptoms. Whether or not surgery will lower one’s pain is multi-factorial. For some people, surgery is a game-changer in giving one’s quality of life back and they notice a significant improvement to pelvic pain and dysmenorrhoea.
However, some people go on to notice no difference in pain at all. The reason for this is also multi-faceted. Over the years of experiencing pelvic pain, we may also develop an overactive pelvic floor which causes pelvic pain in itself. So even when the endometriosis is removed, the pelvic floor dysfunction remains. This is why it’s imperative to include what’s called a pelvic floor physiotherapist or osteopath into your care team (you may also be eligible for a subsidised care plan through your GP). Additionally, you may also have a high production of prostaglandins with your periods which cause the uterus to contract. We also have other pain-signalling pathways that affect how we perceive pain. This highlights why having a multi-modality team such as physical therapists and naturopaths who understand this space well are also critical for correcting all areas of your body.
How to advocate for yourself
You know your body better than anyone else, and if your pain is being dismissed and down-played, it’s time to seek another opinion.
From the time of reporting debilitating period pain to my doctor, and finally being diagnosed, I went through 17 years of being sent in circles. From the pill to ponstan, from being laughed at to having a several pointless ultrasounds; I get it.
The best thing you can do is come informed to your next appointment:
- Be straight: tell your GP you suspect you may have endometriosis as you experience these XYZ symptoms and you’d like a referral to XYZ clinic for a specialised ultrasound and/or;
- Do your research: find a top endo surgeon in your area and tell your GP that you’d like a referral to that specific specialist
- Be medically informed: research the pros and cons of the medications you may be offered and don’t be afraid to say no. It’s your body.
- Speak to others: join endo communities, follow well-informed endo pages and get advice from multiple sources to see what’s right for you
