End – oh – mee – tree – oh – sis. 

A word that’s tricky to say, and can be even trickier to get diagnosed. So tricky in fact, that it’s estimated to take an average of seven and a half years for the condition to be diagnosed. 

There’s also a whole host of inaccurate and downright scary information about endometriosis online, so for Endometriosis Awareness Month, here are the reliable, straight-talking facts that you need to know.

What is endometriosis?

Endometriosis is the growth of endometrial-like tissue (the lining of the womb/uterus) outside of the uterus, within the pelvic cavity, on the ovaries, bowel, bladder and, in rare cases, on the liver and lungs. Although the tissue is not in its usual place it still responds to female hormones throughout the menstrual cycle; it thickens and then begins to fall away as it would during a period. However, it has no escape route, and causes irritation, inflammation and often excruciating pain. 

Eventually, this cycle of inflammation can cause scar tissue to develop, which in turn can cause the normally mobile internal organs of the pelvis to become frozen together, further adding to the pain.

What are the symptoms of endometriosis?

Painful periods, which are often also very heavy, are the symptom that most people tend to be aware of. Depending on where the disease is in your pelvis can dictate which other symptoms you may have. For example, if it’s on your bowel then you might get pain when you move your bowels, and if it’s on your bladder it can cause pain when you pee or even mimic cystitis. And then there’s the symptom that no one likes to talk about; painful sex. This tends to be a deep pain that can occur due to the internal scarring. 

Please don’t be afraid to talk to your doctor about any of these symptoms, or anything else that’s bothering you. We need to know these things. Plus, it’s always worth reinforcing how much these symptoms affect your day-to-day life to give an idea of the severity. 

I also love period trackers such as Moody Month for helping you work out whether there is any correlation between the symptoms and timing of your cycle, which can also be helpful for your doctor. During your appointment you can just whip out the tracker to help explain, especially when timing can be short during consultations and you may be feeling overwhelmed by the situation.

What causes endometriosis? Does diet affect endometriosis?

No one really knows, but several theories exist. One of these is ‘retrograde menstruation’. That happens when the blood backtracks up the fallopian tubes and is released into the pelvis during your period, resulting in endometrial tissue being deposited there. 

Most of us will have some degree of retrograde menstruation, even women who don’t have endometriosis. That’s why it’s also thought that abnormalities in the immune system are involved, enabling the cells to continue growing in their unnatural environment. Many people also suggest the cells are there from birth.

Diet may affect endometriosis, but this varies from individual to individual. Dairy always takes a beating when it comes to endometriosis, as some believe the hormones in the milk make endo symptoms worse. 

There isn’t a great deal of evidence for that, and very few patients of mine have said that cutting out dairy improved their symptoms. In fact, a large study of American nurses found those who consumed more dairy actually had a decreased risk of being diagnosed with endometriosis. This may be due to the fact that dairy is a great source of vitamin D, and women with the disease are known to typically have lower levels compared to the general population. 

Gluten is another food substance that some people advocate removing from the diet. It may work for some, but in my opinion it’s probably the people who tend to get IBS-type symptoms from gluten, because if it’s inflaming your bowel it may flare up the endometriotic deposits and scarring in your pelvis, as they sit right next to your bowel. I see a lot of women who have tried cutting out dairy or gluten, who feel like they failed because it didn’t have a positive impact. 

If it doesn’t work for you, don’t feel bad, and don’t feel guilty for reintroducing them into your diet. My biggest piece of dietary advice is to ensure you’re eating plenty of fibre, fruits and vegetables, and drinking loads of water so you don’t get constipated, as that can make the pain worse for lots of women.

What is the treatment for endometriosis?

Surgery is the gold-standard way of diagnosing the disease. This usually means keyhole surgery to directly visualise the disease. Treatment may also be performed at the same time, which can involve removing scar tissue, deposits and/or cysts. 

Surgery for very severe endometriosis should only be performed by a specialist endometriosis surgeon, and may require a joint procedure with a colorectal (bowel) surgeon or a urology surgeon (someone who operates on the bladder & kidney) depending on where the endometriosis is sitting. Many surgeons will advise some form of hormonal therapy, such as the contraceptive pill, Mirena coil, or injections of something called a GnRH analogue. This is also an option for people who don’t want or need surgery; the aim is to block the hormones that cause tissue to grow and shed every month, thus reducing the amount of pain and bleeding.

Does endometriosis affect fertility?

Yes, endometriosis can affect fertility, for several reasons including the following:

1. By causing scarring that can stop the fallopian tubes being able to move and pick up eggs from the ovaries. Scarring can also block off the route through the tube and into the uterus, where the egg needs to implant.

2. By causing cysts on the ovaries that may interfere with healthy ovulation (release of an egg).

3. Possible abnormalities in the way the body responds to progesterone, a hormone essential for a healthy pregnancy.

This is why it’s estimated that around 30% of women undergoing investigation because they’re struggling to get pregnant have endometriosis. During my time in the fertility clinic I’ve come across many women who describe quite clear symptoms of endometriosis, yet it’s the first time they’re speaking to a doctor about it. It’s saddening to hear that their symptoms are often something they’ve thought they had to ‘put up with’ or didn’t feel confident enough to speak to their doctor about. 

Having said that, many women will not have had any symptoms of endometriosis before being diagnosed when they first present with fertility problems. In addition, the severity of disease seen inside the body doesn’t always correlate well with the severity of symptoms.

Your gynaecologist will be able to talk to you about how your particular case may affect your fertility but very broadly speaking here are some figures as a guide…

If 100 couples have regular sex for one year:

- 84 will get pregnant in an unselected population

- 75 will get pregnant with mild endometriosis

- 50 will get pregnant with moderate endometriosis

- 25 will get pregnant with severe endometriosis

It’s really important to point out that a diagnosis of endometriosis doesn’t automatically mean you’ll struggle to get pregnant, so it’s vital you use contraception until you get to the point of wanting to conceive.

This feature was originally published in March 2019

Images: Getty, Unsplash