While knowledge about endometriosis has certainly been increasing, how many of us actually know what it is? Despite one in 10 women in Australia living with it right now, many of the symptoms and signs of the condition go unrecognised.
For many people with a uterus, the struggle to get a doctor to take their menstrual pain seriously is very real, and for years conditions like endometriosis have gone undiagnosed or mistakenly passed off as something else.
Some of this comes as a result of doctors struggling to comprehend, or identify, a health issue that is misunderstood and regularly pushed to the side. But there is also an increasing amount of surface-level discussion from the public that could do with some context.
So, what is endometriosis?
First things first, endometriosis is a condition that occurs when the lining of the uterus (also known as endometrial tissue) grows outside of the uterus. This tissue can grow in other places like the fallopian tubes, ovaries, and pelvis, and when the time comes for it to shed, it has nowhere to go.
This tissue can cause inflammation, pain and result in other issues, too. While being diagnosed with endometriosis doesn't make you infertile, it is known that endometriosis is a cause of taking longer to fall pregnant, as well as an increased risk of miscarriage. Between 30-50% of women with endometriosis are infertile.
Endometrial tissue growing outside the uterus is known as an endometrial implant. This can result in increased inflammation, including the release of pro-inflammatory molecules that cause pain. This inflammation can also cause adhesions within the pelvis as various organs and tissue sticks together. All in all, it's not a good time.
What are the signs of endometriosis?
For many women, the process of getting diagnosed with endometriosis can go on for years. Annoyingly, the symptoms are so similar to symptoms of menstruation that many people think they’re just having a "bad period".
Add on top of that the fact that many women don’t experience symptoms at all and you’ve got yourself a medical condition that is very hard to diagnose. For some, getting the diagnosis at long last can be a welcome relief, since they finally confirmation over the cause of their pain.
However, there are some signs and symptoms that are typical of endometriosis, these include:
- Period cramps with a stabbing feeling
- Heavy and long periods (over 5-7 days)
- Pain during sex
- Pain when you poo or pee
- Chronic fatigue
- Infertility or struggling to conceive after trying for 12 months
What causes endometriosis?
Scientists haven’t figured that bit out yet. Many of them agree on a common theory that some menstrual blood from the lining flows backwards from the uterus to the fallopian tubes and into the pelvis during a period. They think this could be where the endometrial tissue could begin to grow.
We know that genetics has something to do with endometriosis, however, while it can run in the family, it doesn't always. Symptoms can really vary from person to person.
What is it like to live with endometriosis?
No, really. If you ask most women who suffer from endometriosis what it’s actually like they will probably tell you that it is characterised by painful cramps, stabbing pains, and the need to curl up in the foetal position at least one day of the month.
There are ways to combat the pain, including the classic period remedies of over the counter pain relievers, a hot water bottles, and lavender oil. However, because the pain can be much more severe, sometimes women opt for surgery.
What about surgery?
Managing endometriosis can be a tough and long journey. Plenty of women struggle to get a proper diagnosis, and while things are improving in this regard (thank god) endometriosis is not something you can "fix." Management, then, is the way forward.
There are some pretty serious options someone with endometriosis can choose to take. One option is a laparoscopy, a surgical procedure which can remove or destroy the endometrial tissue that exists outside the uterus and repair any damaged organs. Although this is a good option for pain relief, there’s a 20% chance of it coming back after two years and a 40-50% after five.
For those with very severe symptoms, and those women who aren’t wanting to have children, a hysterectomy can be an option as well. However, this is normally a last resort due to the seriousness of the procedure and how permanent it is.
Can you cure endometriosis?
Sadly, no. Endometriosis has no cure but the symptoms can be managed. If you think you have endometriosis, or are suffering from the signs, then it is best to speak to a doctor who can diagnose you and provide you with the mediation you need to manage it.
It is also good to know that the contraceptive pill can help to relieve the symptoms of heavy and painful periods and make your periods more regular. Although the contraceptive pill is often considered a god send by women who suffer from endometriosis, it can also be a negative in the sense that it may mask the symptoms, or not help at all.
Some women may find they don't have pain, or a diagnosis, until they come off the pill in later life. Obviously, this is normally at the point when they want to conceive, so finding out you have endometriosis at that point can come as a shock.
What do I do if I think I have endometriosis?
If you think you might have endometriosis you can request to be referred to a gynaecologist. Unfortunately, the gold standard for diagnosis remains key hole surgery (laparoscopy). In very advanced disease an ultrasound can pick up signs of endometriosis, but it's important that the scan is done by someone who is very experienced with women's ultrasound. The thing is, a scan will not pick up mild endometriosis (which can still be very painful). Don't let anyone tell you that you definitely don't have endometriosis just because your scan is "normal."
Although endometriosis is hard to diagnose, it is best to get the ball rolling with it rather than put it off. Beginning management early is a good step.
If you think you might be living with endometriosis, make sure you explore all the options available to you with your doctor or fertility specialist - whether that's to do with managing the pain or treating infertility.
Take a look at our guide to managing endometriosis to learn more.