Everything you need to know about endometriosis

Unless you’ve been living under a rock (and we have no judgement about your living arrangements), you probably will have heard the term ‘endometriosis’. Women who have it talk about the unbearable pain, and that it can sometimes be difficult to get diagnosed (or find a doctor that’ll take you seriously). But another element to this godawful condition is fertility challenges. In fact, endometriosis is behind about 25 per cent of infertility cases. Shocking, right?! 

Well the good news is that general understanding of the condition is increasing, and endometriosis treatment is getting better and better. These days, more women are able to access the support they need to get pregnant with endometriosis.

So what is this condition, what are the signs and symptoms of endometriosis, and how in hell do you start a family with all this going on? 

Let’s start off with the basics.

What IS endometriosis?

Endometriosis is when the type of tissue that lines your uterus randomly starts growing in other parts of the body – most notably the ovaries, fallopian tubes, and pelvic wall tissues. But it doesn’t just chill out in places it shouldn’t be. It can get trapped and cause irritation and adhesions (scarring). What a jerk.

There are a few things you should know about endometriosis.

Endometriosis symptoms include pain, pain, and more pain

  • Painful periods
  • Pain during sex
  • Pain while pooping or peeing
  • Pain in the pelvic area, lower back and legs.

And aside from all the pain, you can expect equally unpleasant:

What does endometriosis feel like?

A lot of women have battled with how to explain endometriosis pain, which makes menstrual cramps feel like a gentle caress by comparison. Some firsthand experiences in this HelloGiggles article put it into perspective for us:

“Like my uterus is sitting on a bed of razor blades.”

“Like fireworks going off inside you.”

“Like someone is taking a cheese grater to my cervix.”

“A million ninjas with samurai swords slicing into my uterus.”

In short, endometriosis pain is no good. 

It IS worth mentioning that not all women with endometriosis suffer from intense pain like this, but most do. Around 50 per cent suffer from chronic pelvic pain, and 70 per cent experience intense period pain.

What does endometriosis look like?

On the outside there’s nothing to see. But when a doctor performs a surgery called a laparoscopy to have a peek around your abdomen and pelvic area inside, it’s a different story. Cysts or pockets of endometrial tissue can be visible on the pelvic surface and organs, and may be flat or raised patches of clear, white, brown, red, black, or blue. Yikes.

Source: Mayo Clinic

Some (extremely fortunate) women might have these internal signs of endometriosis, but not experience the intense pain. So they may not realise they have endometriosis till they run into fertility challenges. (We’ll get to the endometriosis and infertility conundrum in a sec.)

So what causes this thing, anyway?

Endometriosis causes are a mystery

Doctors are still unsure exactly what causes endometriosis, but there are some theories.

  • Family history – Is endometriosis genetic? You do have an increased chance of getting it if a close relative has it, so there’s something to this theory. Studies have found that if you have a first-degree relative with endometriosis, you’re seven to 10 times more likely to get it. And while research into genetic markers indicating endometriosis is making headway, there’s not currently an endometriosis test you can take during genetic screening.

  • Retrograde menstruation – While your period typically comes out of your vagina (oh don’t we know it), sometimes it actually goes backwards into your fallopian tubes and pelvis. Yeah, weird. When this happens, it should just be broken down by the body and not be an issue. But in some women, the endometrial tissue starts to grow into endometriosis.

  • Metaplasia – This is the theory that normal pelvic tissue just spontaneously turns into endometriosis. Why? Who knows.

  • Immune disorder – Or perhaps women with endometriosis have an immune dysfunction that makes the body unable to fight off endometrial tissue.

There are 4 different endometriosis stages

The American Society of Reproductive Medicine (ASRM) classifies endometriosis under four different stages or ‘levels’.

Stage 1: minimal disease

Stage 2: mild disease

Stage 3: moderate disease

Stage 4: severe disease

These endometriosis stages don’t necessarily relate to the amount of pain experienced, or the fertility difficulty caused. Rather, they’re used to classify the spread and depth of the endometriosis.

While Stage 3 or 4 may present more fertility challenges sometimes, it’s not always the case. It all depends on which reproductive organs your endometriosis is affecting. 

Chatting to a fertility doctor about your unique situation will help you understand how you’re impacted by the condition and what you should do to get pregnant.

Endometriosis diagnosis: It’s complicated

The problem with endometriosis pain is that it can be easy for doctors to brush it off as menstrual pain or something even more trivial. (*cough* male doctors *cough*)

While it’s true that some of the symptoms of endometriosis could be similar to other conditions, they still shouldn’t be ignored or played down. You have full permission to advocate for your body and back your pain experience, even if your doctor doesn’t seem concerned about it. Get another opinion! Get to the bottom of it! Push for your endometriosis diagnosis if you need to. Maybe it’s a matter of asking the question outright:

“Do I have endometriosis?”

Endometriosis Australia states that the only way to confirm the condition is with a laparoscopy procedure and biopsy. This involves a surgeon slipping a teenie telescope into your belly to look around your abdomen and identify any endometrial growth. A sample of the tissue is then sent for analysis and official diagnosis.

You could be given a diagnosis without the official surgery, but this isn’t too common.

Does endometriosis cause infertility?

In short, yes it can. It doesn’t guarantee fertility struggles, but the evidence clearly points to a link between endometriosis and infertility. Around 30 to 50 per cent of women with endometriosis will have difficulty getting pregnant.

There are a few reasons that endometriosis causes infertility:

  • Endometrial growths and lesions can obstruct the fallopian tubes and reproductive organs, making it difficult for the sperm and egg to unite.

  • The pelvic environment contains inflammatory substances and cells in women with endometriosis, meaning it’s just not a great place in which to produce a baby.

  • There’s evidence to suggest that egg reserves (amount of eggs) and quality are affected by endometriosis.

  • Studies show that the uterus functions differently in women with endometriosis, making implantation more difficult and miscarriage more likely.

  • Pain during sex can make it challenging to even want to try and get pregnant.

  • Hormonal birth control is one of the key ways to treat endometriosis – which is obviously going to get in the way of falling pregnant.

Despite all this, women with endometriosis wanting to start a family often can.

Can you get pregnant with endometriosis?

Yes! Many women with endometriosis conceive naturally and have healthy babies. Even some with more advanced endometriosis. Others choose to go straight to an endometriosis specialist for support in conceiving, and this is okay too. 

We will say, though: You’re advised to see a fertility specialist if you’ve been trying for six months with no success, particularly if you’re over 35.

You might opt for IUI or IVF treatments to support conception with endometriosis. With these technologies, you’re just about as likely to achieve a successful pregnancy as other women with fertility issues.

Discuss your options with your fertility specialist. They might recommend fertility testing for you and your partner to determine if assisted conception techniques would give you a better outcome. And if you’re not ready to have kids right now but will one day, they can also help you explore freezing your eggs. (*cue Aladdin’s A Whole New World*)

Endometriosis and pregnancy complications

Getting pregnant is one thing, but it’s also worth knowing that endometriosis can increase the likelihood of certain complications in pregnancy, including:

  • Miscarriage or ectopic pregnancy.

  • Pre-term (early) labour or babies with low birth weight.

  • Placenta previa (when the placenta sits low near the cervix), which can cause bleeding or premature delivery.

  • C-section birth (which isn’t necessarily a complication by the way – it may be your preferred method of birthing!)

Close contact with your maternity care team, and enlisting support from a women’s health physio can help you effectively manage your endometriosis during pregnancy. Get your crew around you, mama!

How to treat endometriosis

Endometriosis treatment comes down to managing your pain, overcoming any barriers to conceiving a baby, and coping with everyday life. There’s no real way to ‘cure’ the condition altogether.

After an endometriosis diagnosis, your doctor may refer to you one or some of the following treatment options.

Medical treatments

Non-hormonal pain-relief medication like ibuprofen, paracetamol, and stronger painkillers may be prescribed to help you manage endometriosis pain day to day. But obviously these are just used to manage pain, not to stop it from happening.

Hormonal medications can also be useful, including the oral contraceptive pill and progestogens (delivered via IUD, rod or tablet). These may assist with managing your symptoms, but again won’t actually remove endometrial growths.

Endometriosis surgery

Surgery for endometriosis is usually performed for women with really extreme pain, or with ongoing infertility problems. There are two ways to do it:

  1. A laparoscopy is the safer and more common form of endometriosis surgery. Your doctor will perform a small incision in your belly, inspect your ovaries and uterus, and remove any endometriosis implants (growths). This can often remove pain and improve fertility with one surgery, but endometriosis might sneak up again in future.

  1. A laparotomy is a more extreme form of surgery, which involves a large surgical cut in the abdomen and a longer recovery time. This is only really used in very severe endometriosis cases.

Complementary treatments

Your doctor might also refer you to other specialists to manage your endometriosis. For example:

  • A physio, to manage pain and treat symptoms.

  • A nutritionist, to improve your overall health and suggest an appropriate  endometriosis diet.

  • An acupuncturist, to assist with pain management (not for needle-phobes).

  • Psychologists, to help you work through the mental side of living with constant pain.

Mama, dealing with an endometriosis diagnosis can be hella tough – especially when it brings fertility problems with it too. If we can leave you with one light at the end of this tunnel, it’s that endometriosis symptoms may even go away for a bit during pregnancy and breastfeeding. Amazing!

Read next: When and why to see a fertility doctor

Fadhlaoui A, Bouquet de la Jolinière J, Feki A. Endometriosis and infertility: how and when to treat?. Front Surg. 2014;1:24. Published 2014 Jul 2. doi:10.3389/fsurg.2014.00024

Jean Hailes for Women’s Health, Endometriosis – Symptoms & Causes

Verywell Family, Causes and Risk Factors of Endometriosis

Endometriosis Australia, What is endometriosis?

Endometriosis Australia, Fertility and Endometriosis – Should I worry?

Verywell Family, What to Know About Endometriosis and Pregnancy

Verywell Family, What are the Stages of Endometriosis?

Mayo Clinic, Endometriosis

American Society for Reproductive Medicine, Endometriosis – a patient education video
Endometriosis Australia, Pregnancy and Endometriosis

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