What we'll cover

⚡️In a nutshell

  • Endometriosis is a condition where the lining (known as endometrial tissue) grows outside your uterus. It's a common condition affecting 1 in 10 women in Australia.
  • Common Endo symptoms can include painful periods and pain during sex; which can be managed with a number of safe and non-invasive treatment options.
  • Being diagnosed with Endo doesn't mean you can't have a baby. In fact, most women with Endo will have normal, uncomplicated pregnancies. However, some studies have shown Endo increases the risk of miscarriage, preterm birth and haemorrhaging.
  • There are treatment options for infertility caused by Endo - such as Laparoscopy surgery and IVF - which you can talk to your Doctor or Fertility specialist about.

🔪 Killer cramps? Not normal.

Have you ever found yourself curled up in a ball, unable to move and helplessly counting down the seconds until the next stabbing stomach pain hits you?

Pain. It's something we associate with periods but what I just described is not your average period pain. It's common, yes. But it's not normal.

So let’s talk about it, because it may be a sign that you have Endometriosis, a condition present in 1 in 10 women of reproductive age. In Australia alone, more than 700,000 women are living with Endo.

😟 What is Endometriosis?

Endometriosis (Endo) is a condition where the lining in your uterus grows outside your uterus. I know, sounds bloody awful.

So what's happening here?

Firstly, let's understand what's supposed to happen.

Before your period, estrogen and progesterone stimulate the growth of the lining of your uterus - known as the endometrium. Why? It needs to thicken the lining of your uterus so it can support a foetus if conception occurs (the embryo likes it cushy). If it doesn’t thicken up, estrogen and progesterone levels drop. This causes the build-up of endometrial tissue to shed - cue period.

Now, for a woman suffering Endo - this process looks a little different.

With Endo, that same endometrial tissue somehow found a way to grow outside your uterus. It grows often on or inside your pelvis, ovaries, fallopian tubes, bowels and bladder. Basically all the places it shouldn't be growing. This tissue continues to grow over time.

When it's time for your period, it tries to shed. 😳 Yeah. It has no outlet to be carried out of the body seeing as it's located outside of the uterus. There's also inflammatory cells that are released which can cause many symptoms such as pain and infertility.

The growth of the excess tissue and not being able to shed it, is the very reason why endometriosis can cause you so much pain around your period. The cell growth can also create scar tissue that can sometimes make organs stick together, called adhesions.

🥴 Um, how did lining get outside my uterus?

Good question. Scientists haven’t quite figured this one out yet. 😣

But, there is some consensus on a common theory - known as Retrograde menstruation theory.  

The theory is that some menstrual blood and lining flows backwards from the uterus into the fallopian tubes and into the pelvis during a period. This is where endometrial tissue could begin to grow, getting worse overtime.

Genetics could be to blame, too. Endo often runs in families, but the symptoms vary from person to person. It's not guaranteed you will have it just because the women in your family do.

⏳ Endo can take years to diagnose

It can take an average of 10 years from the moment you notice symptoms to being able to get an accurate diagnosis of Endo.

As a result, many women with Endo suffer in silence.

Why so long?

It could be partially due to the fact that the only way to currently diagnose Endo is through a minimally invasive surgery known as laparoscopy. During this process, a surgeon can locate, remove or laser off any visible lesions of endometrial tissue.

This surgery can cost anywhere between $1,000 - $5,000, depending on your doctor. If you have Medicare or private health, some or all of the cost can be covered.

Obviously, surgery is never ideal. And the science around Endo still has a long way to go. Researchers are still trying to find ways to diagnose Endometriosis without having to go through surgery.

🤔 What symptoms to look for?

Women have different experiences with Endo. Some women may not experience any symptoms at all and some may experience really symptoms very severely.

The most common symptoms of Endometriosis are:

  • Period cramps that feel like you're being stabbed multiple times
  • Heavy and long periods (typically over 5-7 days)
  • Pain during sex
  • Pain when you poo or pee, or blood in urine
  • Chronic fatigue
  • Infertility (struggling to conceive after trying for 12 months)

For those of you on hormonal contraception: Also take into consideration that sometimes, symptoms like period cramps as well as heavy and long periods can be masked by your use of hormonal contraception.

🍀The four stages of Endo

Every woman experiences Endo differently. There are four stages of Endo - minimal, mild, moderate and severe. The differences between stages are based on the amount and severity of the scars, lesions and cysts.

So if I am experiencing severe period pain, then I must have severe stage Endo?

No.

It's important to know that the severity of your symptoms doesn’t correlate to the severity of your Endo. Confusing, I know.

If you suspect you might have it,  it’s worth finding a specialist in Endo to get yourself properly assessed.

😅 Endo does not mean you're infertile

Having Endo doesn't mean you are infertile.

However, it can still make it harder to become pregnant. For couples where the woman has Endo - chances of falling pregnant are at 2-10% per month, compared with fertility rates of 15-20%.

Endo can cause issues with trying to conceive in a number of ways.

  • Endo might cause scar tissue to develop, which can cause damage to your ovaries or block the fallopian tubes.
  • The inflammation caused by the Endo reduces egg quality, which also makes the uterus a difficult environment for the sperm to do its thing. The sperm is either damaged or their movement through the uterus and fallopian tubes is slowed down, which means it could miss out on its chance to fertilise an egg.

If I get pregnant, does Endo complicate things?  

Most women with Endo will have normal, uncomplicated pregnancies. But, we have to be honest, we did find some studies that have shown Endo increases the risk of miscarriage, preterm birth and haemorrhaging.

👩‍⚕️Treatment isn't black or white, either

While there are treatment options, there isn’t yet a cure for Endo.

You should talk to your doctor about your symptoms, life stage and your family plans. Based on your situation, they may suggest treatments to ease the pain, surgery or fertility treatments.

💃🏼 Options to manage the pain with Endo

Pain relievers and contraception

Painful cramps, stabbing pains and splitting headaches every month can get old, real quick.

Sometimes over-the-counter pain relievers such as ibuprofen (e.g Nurofen) and naproxen (e.g. Naprogesic) can help ease the pain. If you're trying to avoid taking pain relievers - you could try a hot water bottle or wheat pack with a couple of drops of lavender oil.  

If none of that works for you, you may want to speak to your Doctor about trying some low-dose oral contraceptive pills or hormonal IUDs. They are prescribed to help you regulate periods and decrease (or stop) the severity of your period pains.  

They also stop the typical growth and shedding of the uterine lining,  and the ups-and-downs of hormones which cause the growth of endometrial-like tissue.

Laparoscopy

The same surgery used for Endo diagnosis - a Laparoscopy can help you get your quality of life back.  The goal of the surgery is to remove or destroy the endometrial tissue present outside of the uterus, and to repair any damaged organs or tissue caused by Endo.

But keep in mind that studies have shown even after the surgery, the likelihood of the disease coming back is about 20% after two years, and 40-50% after 5 years.

Another thing to be aware of is that there is a risk of scarring from the surgery. Not the cosmetic kind. The kind that can impact your fertility, especially if the scarring happens on your ovaries.

So, it's important to discuss this further with your doctor and weigh up the pros and cons of the procedure.

Hysterectomy

Hysterectomy surgery is the surgical removal of the uterus. Sometimes, the removal of ovaries. It's a very permanent decision to make, so it shouldn't be made lightly.

Women will typically consider this kind of surgery after previous surgical treatments have failed or for women who are no longer looking to fall pregnant.

Also important to note that while it may be an option, it doesn't necessary mean it will cure Endo. As it might not be able to completely reverse the inflammatory state or repair severe damage to the reproductive system. Again, something you need to speak to your Doctor about.  

‍🍍 Options to treat infertility with Endo

If you’re having trouble getting pregnant and have your suspicions of Endo being the cause, there are options you can take to give yourself better chances.

Make sure you rule out other factors that might be causing trouble with conceiving first.

It’s worth checking your partner’s sperm, as the male is typically the cause for 40% of infertility cases.

Just make sure you discuss your options and your personal situation with a doctor. Your age and stage of Endo you have, has to be considered.

Laparoscopy

Again, a Laparoscopy (removing the endometrial tissues outside the uterus) might be an option for you. But just remember the risks we mentioned earlier:

  • It might come back: After surgery, the likelihood of the disease coming back is about 20% after two years, and 40-50% after 5 years - according to some studies.
  • Risk of scarring from surgery: This can impact your fertility, especially if the scarring happens on your ovaries.
Some studies have shown Laparoscopy surgery improves chances of natural conception in the 3-6 months following surgery.  

If you're still having issues falling pregnant after a laparoscopy, it's time to talk to your Doctor or fertility specialist about your options. They may suggest In Fertilisation (IVF).

IVF

IVF involves injecting hormones into your body to tell your ovaries to start producing some mature eggs as safely as possible.

Once the ovaries have had the kickstart they need, the eggs are retrieved from your vagina with a thin needle suction device (don't worry, you're safely sedated).

Your specialist will then manually acquaint the egg with the sperm in a lab procedure in the hope to produce some quality fertilised eggs. By now, the goal is to have some embryos. But we only need one to transfer it back into your uterus to start growing into a baby. Ta-da!

It’s the most effective fertility treatment available, but it can also be expensive. It’s important that your Endo is properly assessed and treated by an experienced fertility specialist.

IVF isn't for everyone either. We'll have a separate guide for that (watch this space)

If IVF isn’t an option, you may wish to speak to your doctor about combining ovulation induction with intrauterine insemination (IUI).  But we're going to need to write another guide to explain that one!

✊🏼 Alright, let's do this

Let's start talking about Endo more. Honestly, so many Australian women are affected by it (1 in 10!). If you can relate to the awful symptoms of Endo, or you've been told you've got Endo - then we hope you know: you do have options.

Is it a straight forward path? Not exactly. But that doesn't mean you should give up!

Endo doesn't mean you are infertile.

If you're discovering Endo for the first time, start the conversations early and rule out some things for yourself - if you can.

If you are living with Endo, 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.

📕 References

  1. Adamson, GD. and Pasta, DJ. Endometriosis fertility index: the new, validated endometriosis staging system. Fertility and Sterility, 2010
  2. Barri, PN., et al. Endometriosis-associated infertility: surgery and IVF, a comprehensive therapeutic approach. Reproductive BioMedicine Online, 2010
  3. Bischoff, F., and Simpson, JL. Genetic basis of endometriosis. Annals of the New York Academy of Sciences, 2004
  4. Bulletti, C., et al. Endometriosis and infertility. Journal of Assisted Reproduction and Genetics, 2010
  5. Casper, JR. Progestin-only pills may be a better first-line treatment for Endometriosis than combined estrogen-progestin contraceptive pills. Fertility and Sterility, 2017
  6. D'Hooghe, T.M., et al. Endometriosis and subfertility: is the relationship resolved? Seminars in Reproductive Medicine, 2003
  7. Dunselman, GA., et al. ESHRE guideline: Management of women with Endometriosis. Human Reproduction, 2014
  8. Fadhlaoui, A., et al. Endometriosis and Infertility: how and when to treat? Frontiers in Surgery, 2014
  9. Goud, P.T., et al. Dynamics of nitric oxide, altered follicular microenvironment, and oocyte quality in women with endometriosis. Fertility and Sterility, 2014
  10. Guo, SW. Recurrence of endometriosis and its control. Human Reproduction Update, 2009
  11. Johnson, E. Laparoscopy: before and after tips. Endometriosis.org
  12. Koch, Juliette., et al. Endometriosis and infertility - a consensus statement from ACCEPT (Australasian CREI Consensus Expert Panel on Trial evidence). Australian and New Zealand Journal of Obstetrics and Gynaecology, 2012
  13. Nawathe, A., et al. Systematic review of the effects of aromatase inhibitors on pain associated with Endometriosis. BJOG, 2008
  14. Saraswat, L., et al. Pregnancy outcomes in women with endometriosis: a national record linkage study. BJOG, 2016
  15. The American College of Obstetricians and Gynecologists. Endometriosis. 2019
  16. The American College of Obstetricians and Gynecologists. Medical management of Endometriosis. Clinical management guidelines of obstetrician-gynecologists. International Journal of Gynecology and Obstetrics, 2000
  17. Vercellini, P., et al. Estrogen-progestins and progestins for the management of Endometriosis. Fertility and Sterility, 2016
  18. Zullo, F., et al. Endometriosis and obstetrics complications: a systematic review and meta-analysis. Fertility and Sterility, 2017

🧠 Contributors

  • ✏️ Words
    Courtney Goudswaard

  • 🧪 Science
    Dr. Vamsee Thalluri

  • 🎨 Illustrations
    Amelia Hanigan