Guide to managing endometriosis

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?

While pain is something we associate with periods, what we just described is not your average menstrual cramp. 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, and more than 700,000 women in Australia alone [1][2].

What is endometriosis?

Endometriosis (or endo) is a condition where tissue similar to your uterine lining grows outside your uterus. We know, sounds bloody awful.

So what's happening here? Firstly, let's understand what's supposed to happen.

Each menstrual cycle, before your period, oestrogen and progesterone stimulate the growth of the lining of your uterus — known as the endometrium. Why? So it can support a foetus if conception occurs (the embryo likes it cushy).

If it doesn’t thicken up, oestrogen and progesterone levels drop, which causes the build-up of endometrial tissue to shed — cue period.

Now, for a woman suffering from endo, this process looks a little different.

With endo, tissue similar to that endometrial tissue somehow found a way to grow outside your uterus — often on or inside your pelvis, ovaries, fallopian tubes, bowels, and bladder. Basically, all the places it shouldn't be growing, and it continues to do so over time.

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

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

What causes endometriosis?

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 [3].

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

Genetics could be to blame, too [4]. 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.

Are there any risk factors?

Though any woman who has started her period can develop endometriosis, you may have a higher risk if you:

• Are in your 20s or 30s
• Experience menstrual periods that last 7 days or more
• Have a shorter menstrual cycle (27 days or less) [13]
• Had your first period before 12 years old
• Have an immune system disorder
• Have had abdominal surgery, such as a C-section [14]
• Have never given birth [15]
• Have higher levels of oestrogen

How is endometriosis diagnosed?

It can take an average of 10 years from the moment you notice symptoms to being able to get an accurate diagnosis of endometriosis [5].

As a result, many women suffer in silence — but why so long?

It could be partially due to the fact that the only way to currently diagnose endometriosis is through a minimally invasive surgery known as laparoscopy [6]. During this process, a surgeon can locate, remove, or laser off any visible lesions of tissue.

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

Obviously, surgery is never ideal. The science around endo still has a long way to go, and researchers are still trying to find ways to diagnose it without having to go through surgery.

What are the most common symptoms of endometriosis?

Women have different experiences with endo. Some may not notice any symptoms at all and some may experience them very severely.

The most common endometriosis symptoms include:

• 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 your urine
• Chronic pelvic pain
• 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 birth control.

The 4 stages of endometriosis

There are 4 stages of endometriosis. The differences between stages are based on the amount and severity of the scars, lesions, and cysts.

• Stage 1: Also known as minimal endometriosis, during this stage there are a few small implants and lesions, but little to no scar tissue.
• Stage 2: This is considered mild endometriosis. There are more implants located deeper in the tissue than in stage 1, and there's also some scar tissue.
• Stage 3: Stage 3 is moderate endometriosis. In this stage, there are several deep implants and, for some women, small cysts on one or both ovaries. There are also thin adhesions, which are bands of scar.
• Stage 4: The final stage is considered severe endometriosis. There are many deep impacts and dense adhesions, as well as large ovarian cysts.

Does endometriosis cause infertility?

Having endometriosis doesn't automatically mean you are infertile.

However, it can make it harder to become pregnant. For couples where the woman has endo, the chances of falling pregnant are at 2-10% per month, compared with fertility rates of 15-20% [7].

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

• It 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 makes the uterus a difficult environment for the sperm to do its thing. The sperm is either damaged or its movement through the uterus and fallopian tubes is slowed down, which means it could miss out on its chance to fertilise an egg

If you're thinking about growing your family, you can look into taking a fertility test. This is a blood test accompanied by a GP consult that can provide some insights about your ovarian reserve, the potential success of egg freezing and IVF, possible signs of PCOS, and more information to help you make family planning decisions.

If I get pregnant, does endometriosis complicate things?  

Most women with endometriosis 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 [8].

If you're expecting and have endometriosis, your doctor may want to closely monitor your pregnancy, so they can identify any complications as early as possible.

Can you cure endometriosis?

While there are ways to treat endometriosis symptoms, there isn’t yet a cure for it.

The most important thing is that you talk to your doctor about your symptoms, life stage, and family plans. Based on your situation, they may suggest treatments to ease the pain, surgery, or fertility treatments.

How to manage endometriosis pain

When it comes to treating endometriosis-related pain, there are a few options you can consider, some more invasive (and more expensive) than others:

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 relieve symptoms. 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 contraceptives, hormonal IUDs, or other types of hormone therapy. These are prescribed to help you regulate your periods and decrease (or stop) severe pain [9].

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

Laparoscopy

The same surgery used for endo diagnosis — a laparoscopy — can help you get your quality of life back. The goal of this surgical treatment is to remove or destroy the tissue present outside of the uterus, and to repair any damaged organs or tissue.

But keep in mind that studies have shown that even after the surgery, the likelihood of the disease coming back is about 20% after 2 years, and 40-50% after 5 years [10].

Another thing to be aware of is that there is a risk of scarring from the surgery. Not the cosmetic kind, but 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 is the surgical removal of the uterus and, sometimes, ovaries. It's a very permanent decision, so it shouldn't be made lightly.

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

Also important to note that while it may be an option, it doesn't necessarily 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.

But, first things first, you should make sure that you can rule out other factors that might be causing trouble with conceiving.

It’s worth checking your partner’s sperm, as the male is typically the cause of 40-50% of infertility cases [11].

Make sure, as well, to discuss your options and your personal situation with a doctor, so they can take into account important details like your age and stage of endo.

Laparoscopy

Again, a laparoscopy might be an option for you, but just remember the risks we mentioned earlier: your endometriosis might come back and there is a risk of scarring from the surgery, which could impact your fertility.

Having said that, some studies have shown laparoscopy improves the chances of natural conception in the 3-6 months following surgery [12].  

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 — and they may suggest In Vitro 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 hopes of producing some quality fertilised eggs. By now, the goal is to have some embryos, but we only need one to transfer back into your uterus to start growing into a baby.

IVF is 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. If it isn’t an option for you, you may wish to speak to your doctor about combining ovulation induction with intrauterine insemination (IUI). You can read more about this in our guide to conceiving solo.

What do I do if I think I have endometriosis?

If you think you might have endometriosis you can request to be referred to a gynaecologist.

Unfortunately, and as we've mentioned before, the gold standard for diagnosis remains keyhole surgery.

In very advanced diseases, an ultrasound can pick up signs of endometriosis, but it's important that the scan is done by someone who is very experienced with women's ultrasound.

The thing is, a scan will not pick up mild endometriosis (which can still be very painful). Don't let anyone tell you that you definitely don't have endometriosis just because your scan is "normal."

Although endometriosis is hard to diagnose, it is best to get the ball rolling with it rather than put it off. Beginning management early is a good step.

Let's start talking more about endometriosis

Endometriosis isn't a rare condition. Honestly, so many Australian women are affected by it (1 in 10!). Yet, it's still somewhat of a taboo subject.

If you can relate to the awful symptoms of endo, or you've been told that you have it, then we hope you know: you do have options.

Is it a straightforward path? Not exactly. But that doesn't mean you should give up. Endo doesn't mean that you're infertile, or that you have to live in pain forever.

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 endometriosis, make sure you explore all the options available to you with your doctor or fertility specialist, whether that's to do with managing pain symptoms or treating infertility.

Image credit: Getty Images