We are noticing more information about Endometriosis in our community and in our news. Advocacy groups are talking, influencers are sharing their stories on major new outlets, the Australian Government has funded GP endo clinics, money for more research was allocated last year and there has been hype lately about a new endo drug, Ryeqo.

This sounds like movement in the right direction for the 1 in 9 women diagnosed with endometriosis.

But is this translating to better quality of life for people living with the disease?

Endometriosis is a complex, multifactorial disease that physically impacts people differently with different impacts on other aspects of their life such as their social and mental health.

To date, there is no cure. We have treatment available through surgical excision and lifestyle improvement through symptom management but one of the hardest aspects of this disease is for patients to hear that it is a chronic condition.

As we implement a multi-disciplinary approach to endo at our clinic, we understand that research to date is still lacking. There is no ‘best practice,’ no ‘road map’ to provide integrated health care.

Our approach that we have adopted is that we work with patients to improve their living condition based on which symptoms are having the greatest impact on their life.

This could be fears around their fertility or it might be painful sex, debilitating periods, impact on bowel and bladder function or constant fatigue.

There is a long list of how people are impacted by endo.

Let’s start this Q and A with an endometriosis definition:

Our professional body RANZCOG says “Endometriosis is a chronic inflammatory condition that can affect women of reproductive age. It occurs when endometrial-like tissue, similar to the tissue that lines the uterus, exists in other parts of the body – most commonly in the pelvis”.

The key parts of this definition are that it is a ‘chronic’ and ‘inflammatory’ disease.

What we see is that it is very much misunderstood by most people, doctors included, leading to a delay in diagnosis and lost time with ineffective treatments.

Recently on The Kick Pregnancy Podcast we interviewed our GrowMyBaby member, Hayley Trengove about her experience with endometriosis and pregnancy. You can listen to this episode here.

It raised even more questions from listeners, so we put together a deep dive Q&A. Let’s keep the conversation going.

Endometriosis Q&A

Why does my endo hurt so much but it is only stage 1?

Endometriosis doesn’t cause the same pain in everyone. Some can have no symptoms, in fact, 20-25% of people with endo will be asymptomatic but it is diagnosed when they have further investigation for infertility or an unrelated surgery.

When it comes to pain, it seems to matter where the endo is located. There are also individual responses to pain that determine the level of pain reported.

Comparing your stage of diagnosis and the pain you experience can lead you to gaslighting yourself. “I can’t believe I only have superficial endo, it must be in my head’.

You experience the pain you do, for a variety of reasons, and that is what requires personalised management.

Is there another way to diagnose endometriosis or do I have to have surgery?

My hope is that one day, we will have something like a simple blood test to easily diagnose endo. Some blood tests looked promising, but none are proving to be reliable. As it stands, the only way to diagnose endo definitively is through histopathological testing from a biopsy at surgery.

If you suspect you have endo, the first step is to have a careful history and examination by a trained specialist. To begin with in Australia, you would see your GP.

Your GP may refer you to a gynaecologist. They may also start you on a hormone pill or refer you for imaging, usually an ultrasound.

Imaging or examination for many people with superficial or peritoneal endometriosis will not diagnose endo as it can’t be felt by examination or be seen on ultrasound or MRI.

Advanced endometriosis producing endometriomas can be detected with a transvaginal ultrasound and MRI by experienced sonographers.

If endometriosis is suspected, regardless of imaging findings, we recommend that you are referred to a gynaecologist for laparoscopic (keyhole) surgery for a definitive diagnosis.

Why did I get endometriosis?

We are still at the theory stage of understanding this disease. It is most likely a combination of causes which speaks to the complexity of the disease.

What is common in all theories is that oestrogen is involved.

We also know that there is an inherited factor. If you have a sister or mother with endo you are seven times more likely to also develop endometriosis.

The traditional theory is retrograde menstruation where part of the menstrual flow moves backwards through the fallopian tubes and reaches and implants on organs in the pelvis and abdomen creating endometrial implants. 

However, this theory doesn’t explain why, if retrograde menstruation occurs in 90% of women, endometriosis isn’t even more common than 1 in 9 women. It also doesn’t explain the cause of deep disease seen in most women with advanced endometriosis.

Other theories include genetic or epigenetics origin where it is thought most women develop microscopic endometriotic lesions which grow or regress depending on environmental factors that turn the gene on or off.

Another in theory is that it is an immune based disease where antibodies against endometrial cells can be found in the blood which then lead to an immune response and inflammation in the affected areas damaging surrounding tissues.

To date, we are not able to pinpoint the cause of endometriosis. Most likely it is multifactorial, and this is where research must focus to be able to find a way to treat it most effectively and one day, cure this disease.

I have been told I have stage 4 endo, but I hear people talking about DIE. What is the difference in classifications?

There are a number of scoring systems to classify endometriosis and the one that was commonly used is the American Society for Reproductive Medicine (ASRM formerly AFS) scoring system. This is where someone was classed as having stage 1, 2, 3 or 4 endometriosis.

I worry a little bit about the scoring system as it suggests that to someone that has been classed as having Stage 3 endo that their disease is somehow more painful than Stage 2 endo. It doesn’t really work that way. It’s an anatomical description of where the endometriosis deposits are but we know that this doesn’t tell us how much pain or trouble that person is having.

A newer classification is the Endofound endometriosis classification (endofound.org) and this centres on where the endo is found and how deep it has infiltrated the tissues. For example, Category 1 describes peritoneal or superficial endometriosis and Category IV describes deep infiltrating endometriosis (DIE) which involves organs within the pelvic cavity such as uterus, rectum, bladder and ovaries.

For those with a higher category classification, generally they are at greater risk for reduced fertility and increased and persistent pelvic pain.

Why does my bowel get irritated?

Bowel symptoms are extremely common in patients with endometriosis. Symptoms can range from constipation, diarrhoea, painful bowel motions, cramping, nausea and vomiting and rectal pain.

For about 10-15% of people, endometriosis can be found superficially on the bowel. This can be removed by excision similarly to elsewhere in the pelvis. A smaller number of patients have deep infiltrating endo which may require bowel resection. This is performed as a combined surgery with a colorectal surgeon.

Even without endometriosis present on the bowel, during a period, endo can cause bowel symptoms by creating an inflammatory response resulting in cramping and diarrhoea.

Why have I been told by doctors to get on with starting my family. I am not ready yet. Is this a problem?

This is an interesting point because it’s always difficult to know, as someone’s endometriosis surgeon, exactly how far is appropriate to take this discussion.

If someone is approaching 30, has bad invasive endometriosis that is likely to impact her fertility, has no immediate plans of trying for a pregnancy then I will typically talk to her about assessing fertility reserve with an egg timer test (AMH) and ultrasound. Freezing some eggs is an option.

In Australia, freezing your eggs cost between $2000-$6000. If you are freezing your eggs because you have severe endometriosis Medicare may cover some of the cost.

Is it possible that endometriosis can cause an ectopic pregnancy? 

Endometriosis can be found in the fallopian tubes, and it can be one of the ways endo causes infertility.  Endometriosis can distort the anatomy within the pelvis, including blocking the fallopian tubes.

Surgically the tubes are quite fragile and it’s very difficult to remove endometriosis without damaging them, so it is often left. This puts the person at high risk of an ectopic pregnancy as the egg gets stuck and implants in the tube.

For anyone with suspected or known endometriosis, I would make sure we do an early pregnancy ultrasound, so an ectopic pregnancy is picked up and treated before it ruptures.

When is the right time to have surgery for my endo?

The right time is based on the severity of the disease at diagnosis, the impact endo is having on your life and/or you are planning for a pregnancy.

We know for many people that endometriosis is a progressive disease. Starting as pain with your period, it can progress to pain outside of the menstrual cycle with associated symptoms such as painful sex, changes to bowel and bladder function, chronic back pain or fatigue.

I saw on a major news outlet during Endometriosis Awareness Month in March that an endometriosis advocate had delayed having surgery because she didn’t believe that there was enough evidence to suggest a successful outcome. 

It is true that even with the most meticulous and careful excision, about 30-50% will report a recurrence in pain over 5 years.

However, for those who have a progressive disease where endo is impacting their life, even if we consider that there is a high chance of recurrence in pain, to limit the progression of the disease the time for surgery is now.

A word about the type of endometriosis surgery…

There is still some confusion about the ablation versus excision surgery. If you think of endometriosis as an iceberg, most of the lesion is implanted into the tissue below the surface. This is why it is important to find a surgeon who removes the whole lesion.

An ablation uses heat to burn off and destroy the lesion, but some lesion remains. It also damages healthy tissue and can create scarring.

If you are looking for an endometriosis surgeon, please ask if they use the excision technique. You could also ask them how many endometriosis surgeries they perform yearly and what recommendations they have to manage persistent symptoms after surgery.

What if I am still in pain, should I have a repeat surgery?

Repeat surgery is recommended based on pain levels, whether symptoms have changed or progressed, and the length of time since the previous surgery.

Occasionally I have people come to me seeking a second opinion because they are still experiencing pain after recent surgery. This is a difficult consultation because even assuming that there was careful excision, their pain isn’t reduced. This may because an incorrect surgical technique such as ablation was used, some endometriosis was missed, or the site of the endometriosis is too difficult to get to or too unsafe to excise. The previous surgery may have been technically perfect, and yet the patient still has pain.

More surgery sometimes isn’t always the best answer as there is always the potential for scarring and the creation of pelvic adhesions.

By understanding someone’s medical history, implementing multidisciplinary care such as physiotherapy, dietitian, pain management and psychology and assessing over a couple of months, if someone is still experiencing the same level of pain, I will consider repeating the surgery to be able to rule out if the pain is due to any remaining or recurrent endo.

Does having endometriosis impact the success of IVF?

Endometriosis can affect several things such as the quality, quantity and safety of the egg pickup procedure. For example, to collect eggs we put an ultrasound probe through the vagina and pass a little needle up through the wall of the vagina and suck the eggs out of the ovaries. If there is endometriosis in that ovary at the time, then it can lead to high risk of infection.

It is a dilemma for somebody who has a choice between having further laparoscopic surgery for endometriosis versus just having another IVF cycle.

We use an algorithm which accounts for issues such as severity of endometriosis and age of the patient to help in that decision. If someone has frozen embryos, we may suggest going ahead with IVF. For those where this isn’t an option, we may suggest to go ahead with further endometriosis surgery to increase the chances of a successful next IVF cycle.

There are so many more questions to answer. As our clinic gets set to join a research project with La Trobe University, we are gathering longitudinal data to have even more answers. If you have any questions about this blog or endo in general, please email reception@ballaratwomensclinic.com.au

Written by Obstetrician & Gynaecologist Dr Patrick Moloney