We need to talk about endometriosis. The condition affects around 176 million people worldwide and yet is still one of the most commonly diagnosed conditions in reproductive health. Culturally we have been sold the myth that painful periods are normal. Whilst a little light cramping can often be expected, the pain that endometriosis sufferers have to deal with on a monthly basis is next level. Here we want to talk about some of the common signs and symptoms of endometriosis and encourage you to advocate for yourself if you think you could be dealing with it.
What is endometriosis?
Endometriosis is essentially a condition where the uterine lining grows outside of the uterus. This manifests in endometrial tissue (which forms the lining of your uterus) growing in areas of your body that it’s not supposed to be. This can include other areas of your reproductive organs - like the fallopian tubes, cervix and ovaries, but it can also be found in other places - from the bowel and rectum to the brain and eyes. See our Anatomy 101 if you’re not too sure about human biology.
This might sound bad enough, but the real tough part is that these little bits of tissue react just the same as your uterine lining as you move through your cycle. This means that as your period approaches, the tissue builds up and sheds aka bleeds. Whilst, within the uterus, this is a totally normal part of your menstrual cycle, outside of your womb it can cause all sorts of problems. If you have endometrial tissue attached to other organs, these monthly bleeds can be incredibly painful and impact other bodily functions.
The pain endometriosis sufferers deal with can have a huge impact on their life. A survey reported that 1 in 6 people with endometriosis believe their careers have been affected - and jobs even lost - due to time off they have had to take to manage their symptoms. Endometriosis can also make it harder to conceive. Whilst many people with endo go on to become happy, healthy parents, between 25 and 50% of infertility cases involve an endometriosis diagnosis.
What are the signs of endometriosis?
So how do you know if you have endometriosis? Well the truth is, it can be very hard to diagnose without surgery (more on that later) but it all starts with you recognising the symptoms and their severity.
Here are a few symptoms to look out for:
- Severe pelvic pain
- Heavy periods
- Painful sexual intercourse and cramping
- Pain during bowel movements or urination
- Ovarian cysts
- Pain during pelvic examinations
- Bloody urine (during menstruation)
- Diarrhea or constipation
It’s important to remember that these symptoms can happen to people without endometriosis, so don’t panic if you are ticking some of the boxes. However, the symptoms are usually more severe and more persistent in people with endometriosis.
If any or all these symptoms apply to you and you KNOW something is not right, go and see your gynecologist or doctor straight away. Painful periods are always something that should be investigated and listening to your body is always the answer.
Misdiagnosis of endometriosis
We definitely encourage you to seek medical help if you think you might have endometriosis. However, it’s also important that we highlight the difficulties people can face when trying to get the support they need.
Unfortunately endometriosis symptoms are often misdiagnosed for other things like irritable bowel syndrome, allergies, ovarian cysts, pelvic inflammatory disease, or a thyroid disorder. It can take an average of 8 years to get a conclusive diagnosis - which can be a frustrating process for anyone going through it!
Part of the reason it’s difficult to diagnose endometriosis is because the symptoms can be similar to other conditions. The only way to really diagnose endometriosis is by a laparoscopy - an operation in which a camera (a laparoscope) is inserted into the pelvis via a small cut near the navel.This allows doctors to identify endometrial tissue properly and see which organs it’s affecting.
Dismissed and disbelieved
However, one of the other, even more frustrating reasons endometriosis takes ages to be diagnosed is simply because sufferers aren't believed - especially as many are women. Yes hello, welcome to Patriarchy Corner.
Pain is subjective, so it can be difficult to make a doctor truly understand how much pain you are in in any situation. However, lots of research implies that women are taken less seriously when we say we are in pain - it’s one of the reasons we are 50% more likely to be misdiagnosed when having a heart attack.
Not only does unconscious bias mean we are less likely to be believed when reporting pain (you can read more about the Gender Pain Gap here) but when it comes to our uteruses, people - yes, even some doctors - believe that it’s normal and something we should put up with. This can make it hard to be taken seriously, but we hope we can encourage you to find confidence to stand up for yourself when it comes to your body. No one knows it better than you so if you think something is wrong, keep pushing until you are taken seriously!
How can you treat endometriosis?
The truth of the matter is, there is no real cure for endometriosis. It’s a condition that people have to learn to live with, but there are definitely things you can do to ease the pain and symptoms. In extreme cases, operations can be done to remove the tissue, but this can be expensive and painful in itself. If you have mild endometriosis, there are actually quite a few natural things you can do to improve your condition.
A good place to start is your diet. Eliminating foods that cause inflammation such as dairy, caffeine, refined sugar, and carbohydrates can help your symptoms. A big no-no are high-estrogen foods or drinks such as alcohol and soy. Yep, alcohol raises your estrogen levels which can worsen your cramps or endometriosis, and soy products can upset the hormone balance. Go for anti-inflammatory foods such as leafy greens, bok choy, celery, walnuts, and so many other yummy foods!
Hormone therapy has also been useful when treating endometriosis because it controls the hormones and can make menstruation lighter or shorter. Although hormone treatment isn’t a permanent fix, it can slow the endometrial tissue growth and prevent new implants from happening!
Other treatments include conservative surgery, which is when they remove as much tissue as possible while preserving your uterus and ovaries, or a hysterectomy, which is when they remove the uterus, cervix, and ovaries. We know this might sound scary, so it’s best to talk to your doctor about all of this first before deciding what’s best for you!
Can you use a menstrual cup if you have endometriosis?
YES! Depending on how heavy your flow is, you might have to empty your cup more often, but it is completely safe to use a period cup if you suffer from endometriosis. Of course, we always recommend consulting your doctor first!
Avoiding the toxic chemicals in menstrual pads and tampons will be highly beneficial for your body (for the obvious reasons), and using a medical-grade silicone cup is a much safer alternative for your vagina. Some people also find that with heavy periods that involve clots, a cup is much better for them than a pad or tampon.
If you’re still weighing up your menstrual product choices, check out our article ‘Game on: Menstrual Cups vs. Tampons’.