An Introduction to Endometriosis.

By Dr. Greta

I wrote this introduction to endometriosis post because the chances are, as a woman with a period, you’ve probably heard the word ‘endometriosis’ bandied around. Particularly if you have painful periods. You may have even had it suggested to you along the way that you have endometriosis?

So I wanted to cover the basics in this introduction to endometriosis post. However, endometriosis is by no means a basic condition. Endometriosis is extremely common and it is a condition that affects women in lots of different ways. It is estimated that 1 in 10 women have endometriosis. I suspect there are many more women out there who have not sought help, who may not have been adequately investigated or who may not even realise they are suffering from this condition. 

Because it is so common I think it’s really important that all women have at least a basic understanding of what endometriosis is. I aim to cover this in this post but will have links to some websites where you can learn more if you want to go further.

What is endometriosis?

To start with, what is endometriosis? Endometriosis is a medical condition where the lining that normally grows inside the uterus (the endometrium) starts to grow in other places outside of the uterus. As you can imagine, when something starts to turn up in places it shouldn’t be, it can cause some problems.

Comparing a normal uterus and endometrium to endometriosis

So where does it grow then?

Common places that the endometrium grows in endometriosis are:

  • The outside surface of the uterus
  • The ovaries
  • The fallopian tubes
  • Sometimes it forms ovarian cysts (a cyst is a little sac full of fluid — in this case blood and endometrial tissue)
  • Inside the pelvis on the pelvic muscles and pelvis walls

Other less common places affected by endometriosis are the bladder, bowel, surgical scars, cervix, vulva and vagina. 

Comparing a normal uterus and pelvis to endometriosis

Struggling to remember where all the bits are inside your pelvis are? Scrub up on your pelvic anatomy first.

What are the symptoms of endometriosis?

  • Very painful periods
  • Sometimes heavy periods
  • Pain leading up to periods
  • Painful ovulation (in the middle of your cycle)
  • Chronic pelvic pain
  • Pain during sexual intercourse
  • Pain when opening your bowels
  • Painful urination
  • Bloating
  • Difficulty falling pregnant

Endometriosis goes FAR beyond painful periods. It is a condition that affects each woman as a whole — physically, emotionally and mentally. So understandably there are other symptoms that can come along with endometriosis which I will cover in another post. 

Not everyone who has a painful period has endometriosis. In fact, there are two types of period pain – that which is considered a normal part of a period and that which is caused by an underlying problem like Endometriosis. You can learn about the difference between the two types here as well as work out which type of period pain you have.

That’s a whole lot of pain. Why is it so painful?

Remember normally the endometrium grows inside the uterus every month under the influence of hormones. Then during a women’s period, she will shed that endometrium as her period, clear it out through the vagina and then start the monthly processes of growing the endometrium again. The deposits of the endometrium that aren’t inside the uterus will undergo the same process but they are NOT shed out through the vagina: effectively they stay trapped where they are. 

The endometrial growth outside of the uterus can, in time, cause organs to stick together inside the pelvis and can also cause significant scarring, which further increases pain. 

Who gets endometriosis?

Unfortunately, endometriosis is a very common condition. It affects around 10% of women, though I think this figure underestimates the true number of women suffering from endometriosis. Not only can confirming the diagnosis be challenging, but a lot of women who have endometriosis may not have sought help, may have not been adequately investigated or may not even realise they are suffering from this condition. Some women only find out they have endometriosis when they start trying to get pregnant and have difficulties conceiving. 

What causes endometriosis?

Unfortunately, there is no definitive answer to this! There are a few theories on what may cause it but the real cause is unknown. One possible theory, known as ‘retrograde menstruation’ purports that perhaps a small amount of the endometrial lining instead of expelling out through the cervix and vagina could be forced upwards into the fallopian tubes and then out into the pelvic cavity. Without getting too sciencey on you, in a nutshell, there hasn’t been any clear cut cause of endometriosis identified (yet).

How do you find out if you have endometriosis?

If you are really identifying with the list of signs and symptoms in this post, then there is a possibility that you may have endometriosis. What you need to do is book an appointment to see your doctor or a doctor at a sexual health or family planning clinic. 

What can I expect from the doctor’s appointment?

Doctors vary in the way they practice but you can go along expecting to have a good chat to the doctor about your symptoms. A few things worth noting down before your appointment that the doctor will want to know are:

  • Date of your last period
  • How long you’ve had pain for
  • What makes pain better or worse
  • When the pain starts (before or during bleeding)
  • When your periods started (at what age) and how long after this the painful periods started
  • Whether anyone in your family suffers from painful periods
  • If you are on any type of contraception
    • If yes, its name and how long for, and whether it helps your pain
  • Whether you get pain with peeing or pooing during your period
  • If you get pain during sexual intercourse
  • Whether you get pain in your pelvis at times outside of your period

After the chat, you may need to have swabs done to check for infections (you can do these yourself in the bathroom) or if you are due for a cervical smear, now would be a good time for this! Some doctors may want to examine you, but they will talk you through that at the time and you can decide together if that would be okay.

One thing I really want to stress to you is that you will NOT get a confirmed diagnosis from seeing the doctor at your first appointment, they may strongly suspect you have endometriosis but they will often refer you onwards to another specialist to confirm this.

How is endometriosis diagnosed? 

If after your chat you and your GP think you may have endometriosis, your GP can refer you on to a specialist gynaecologist for a review. You may have a scan, but the gold standard way to diagnose endometriosis is by having keyhole surgery. The gynaecologist will make small incisions in your abdomen (don’t worry you’ll be under a general anesthetic so you won’t feel a thing) and put a camera inside to see if they can see patches of endometriosis inside the pelvis or on the organs. They will then scrape some of these off to send away to the lab so they can confirm that is what it is by looking at it closely under a microscope.

What can I do if I have painful periods?

Keep a diary of your symptoms and head along to see your doctor. The first step in the process of getting treatment and support is to see your doctor to discuss whether you could possibly have endometriosis. If you can, have a read of the questions above and go along prepared with your answers. 

How do you treat endometriosis?

So you know that surgery I mentioned above: the one where they take a look inside your abdomen to see if there is endometriosis visible? Well this same surgery is sometimes used to treat endometriosis. At the time of the keyhole surgery a specialist gynecologist can actually remove these spots of endometriosis. This surgery can provide a lot of relief to women. Unfortunately, the endometriosis can grow back and some women end up having to undergo multiple surgeries to remove the endometriosis.

Alongside surgery, there are some non-surgical methods of managing endometriosis. These largely consist of using hormone tablets. These hormone tablets are used to try and suppress the growth of the endometriosis deposits inside the pelvis and can also stop you from ovulating. 

Simple pain relief often doesn’t cut it for most women with endometriosis, but some stronger anti-inflammatories can provide a lot of relief for women. You can also check out my post on eight ways to manage painful periods, to see some of the other options.

Where can I learn more about endometriosis?

I hope this introduction to endometriosis post has been helpful for you. I really wanted to cover lots of topics but without overwhelming you too much. There is so much information out there about endometriosis and I strongly encourage my patients to read as much as they can. A few websites that I recommend to get you started are below:

Endometriosis New Zealand (https://nzendo.org.nz/)
Endometriosis Australia (https://www.endometriosisaustralia.org/)

Written and illustrated by Dr. Greta

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