QENDO, Australia's leading support organisation for people affected by endometriosis, adenomyosis, PCOS and pelvic pain, is proud to announce a new partnership with national charity Mentoring Men to provide free, one-to-one mentoring support for men caring for loved ones living with endometriosis and pelvic pain.

Endometriosis and chronic pelvic pain affect 1 in 7* women in Australia. These complex and often debilitating conditions can have a profound impact on physical health, emotional wellbeing, intimate relationships, family life and fertility. While much-needed support exists for those diagnosed, the impact on partners and carers is often overlooked.

To address this gap, QENDO and Mentoring Men have co-designed a pilot program launching this June that will connect male carers with specially trained volunteer mentors who understand the challenges of supporting someone living with a chronic health condition.

Through free, long-term mentoring relationships, participants will receive informal peer support grounded in active listening, empathy and shared lived experience. The program offers a safe, confidential and non-judgmental space where men can openly discuss their experiences and receive guidance from a dedicated mentor.

QENDO CEO Jess Taylor said the partnership reflects QENDO's commitment to supporting not only those living with endometriosis and pelvic pain, but also the people who care for them.

"We know that endometriosis and pelvic pain impact entire families and relationships, yet support for partners and carers is often limited," said Ms Taylor.

"Through this partnership with Mentoring Men, we're creating an opportunity for men to access meaningful support, build resilience, and feel less alone in their caregiving journey. Mentoring Men brings a wealth of experience in providing compassionate, peer-based support, making them the ideal partner for this initiative."

Mentoring Men CEO Filipe Gama e Silva said the collaboration has been developed through a shared commitment to improving wellbeing and preventing men from reaching crisis point.

"The teams at QENDO and Mentoring Men have worked closely together to create a program that addresses a genuine need in the community," said Mr Gama e Silva.

"Having someone to talk to who can listen without judgment and offer support can make an enormous difference. We know that connection and early intervention are powerful tools in helping men navigate challenging circumstances."

The pilot program officially launches this month. Men seeking support, or those interested in learning more about becoming involved, are encouraged to contact QENDO or Mentoring Men for further information.

— ENDS —

About QENDO

QENDO is Australia's leading support organisation for people affected by endometriosis, adenomyosis, PMOS and pelvic pain. Through education, advocacy, support programs and community connection, QENDO empowers individuals to navigate their health journey and drives awareness of conditions that impact millions of Australians.

About Mentoring Men

Mentoring Men is a national Australian charity providing free, one-to-one life mentoring and emotional support for men experiencing challenges, with a focus on early intervention, positive change and suicide prevention.

Media Contact

Ash Webb

Operations

QENDO Australia 

info@qendo.org.au

1800ASKQENDO

But one of the most common — and often most distressing — symptoms I see in clinic are bowel symptoms.

Many people living with endometriosis experience:

• painful bowel motions

• constipation

• bloating

• rectal pressure

• urgency

• diarrhoea

• incomplete emptying

• pain with wiping or sitting

• sharp rectal pain (“butt lightning”) 

And importantly — these symptoms can occur even when endometriosis is not growing directly on the bowel itself.

For many people, this can feel confusing and invalidating.

But the reality is: the bowel, pelvic floor and nervous system are deeply connected.

The Pelvis Works as a Connected System

Your bowel does not function in isolation.

The bowel, bladder, uterus, pelvic floor and nervous system all communicate through shared nerves, muscles and connective tissues — something known as pelvic organ cross-talk.

When one organ within the pelvis becomes irritated, inflamed or sensitised, nearby organs can become affected too.

This is one of the reasons bowel symptoms are so common in people living with endometriosis and persistent pelvic pain.

Why Do Bowel Symptoms Happen?

1. Pelvic Floor Tension and Guarding

The pelvic floor muscles wrap around the bowel and help coordinate bowel emptying.

When someone experiences ongoing pelvic pain, these muscles commonly become tight and protective — often subconsciously.
This can contribute to:

• painful bowel motions

• straining

• difficulty emptying

• feelings of blockage or incomplete emptying

• rectal pressure

Sometimes the muscles are trying so hard to protect the pelvis that they actually make emptying more difficult.

2. Nervous System Sensitisation

With persistent pain, the nervous system can become increasingly sensitive and overprotective.

This can amplify bowel sensations and pain signals, meaning the bowel may feel:

• more painful

• more urgent

• more reactive

• more sensitive during flares

Importantly, pain does not always equal tissue damage.

The nervous system plays a huge role in how symptoms are experienced.

3. Hormones and Period Flares

Many people notice bowel symptoms worsen significantly around their period.

Hormonal fluctuations, inflammation and pelvic pain flares can all influence bowel motility and sensitivity.

This is why constipation, bloating and painful bowel motions often intensify during menstruation.

4. “Butt Lightning” and Rectal Pain

Sharp, sudden rectal pain — commonly nicknamed “butt lightning” — is something many people with endometriosis experience.

This may relate to:

• pelvic floor muscle spasm

• nerve sensitisation

• irritation within the pelvis

• increased nervous system reactivity

And yes — it can happen even without bowel endometriosis lesions present.

Bowel Symptoms Without Bowel Lesions Are Still Valid

This is such an important message.

Not all bowel symptoms mean endometriosis is growing on the bowel itself.

Symptoms can also be driven by:

• pelvic floor tension

• nervous system sensitisation

• inflammation

• altered bowel motility

• pelvic organ cross-talk

Your symptoms are still real, valid and deserving of support 💜

Management Strategies That Can Help

The good news?
There is actually a LOT we can do to help support bowel symptoms.

1. Optimising Bowel Emptying Mechanics

Most people are never taught how to open their bowels effectively.

Simple strategies can make a huge difference, including:

• Using a stool to elevate the feet: This helps relax the pelvic floor and straighten the anorectal angle, making bowel emptying easier.

• “Moo to poo”: Instead of breath-holding and straining, try gently expanding the abdomen and exhaling (“mooing”) as you empty your bowels. This helps improve pressure management while reducing pelvic floor tension.

• Avoiding straining: Your bowel movements should not feel like a workout. Chronic straining can worsen pain, pelvic floor tension, haemorrhoids and prolapse symptoms.

• Responding to the first urge: Repeatedly ignoring the urge to open your bowels can worsen constipation and quieten the urge over time - leading to a megarectum.

2. Fibre, Fluids and Movement Matter

Supporting stool consistency is important.

Some helpful strategies may include:

• adequate water intake

• gradually increasing fibre intake

• kiwi fruit or psyllium husk (where appropriate)

• regular movement and walking

Movement helps stimulate bowel motility and can also support nervous system regulation.

3. Pelvic Floor Physiotherapy

Pelvic health physiotherapists can help with:

• pelvic floor relaxation/down-training

• bowel emptying strategies

• constipation management

• pain management

• nervous system regulation

• reducing fear and guarding behaviours

You Do Not Have To “Just Put Up With It”

Painful bowel motions, constipation and rectal pain are incredibly common in endometriosis — but they are not something you should have to simply tolerate.

Bowel symptoms can have a huge impact on quality of life, confidence, movement, work, intimacy and mental health.

And support exists 💜

Understanding the connection between the bowel, pelvic floor and nervous system can be an incredibly important first step toward feeling more in control of your symptoms again.

Disclaimer: This article is intended for general information only and does not constitute medical advice. Please consult a qualified healthcare professional regarding your individual circumstances.

Need support or interested in seeing Pelvic Health Physio Sophie? Visit qendo.org.au/care to connect with support services and explore available care options.

At QENDO, we're always looking for practical resources that can make daily life a little easier. That's why we're highlighting a valuable and free tool available to all Australians: the National Public Toilet Map.

What Is the National Public Toilet Map?

The National Public Toilet Map is a free online service provided by the Australian Government that helps people locate public toilet facilities across Australia.

Whether you're travelling interstate, heading to a new suburb, attending an event, or simply running errands, the map allows you to quickly find nearby public toilets and access important information about each facility.

The map includes details such as:

• Accessibility features

• Baby change facilities

• Opening hours

• Shower facilities

• Drinking water availability

• Adult change facilities

• Master Locksmith Access Key (MLAK) access

• Sanitary disposal facilities

With more than 25,000 public toilet locations listed nationwide, it can be an invaluable resource for people who need reliable access to bathroom facilities.

Why This Matters for the Endometriosis and Pelvic Health Community

Many people in the QENDO community experience symptoms that make bathroom access a priority.

These may include:

Bladder Symptoms

People living with endometriosis and other pelvic health conditions may experience:

• Urinary urgency

• Frequent urination

• Pain when the bladder is full

• Bladder pressure or discomfort

Knowing where toilets are located can reduce stress and make it easier to participate in everyday activities.

Bowel Symptoms

Endometriosis can affect the bowel and may contribute to:

• Urgent bowel movements

• Diarrhoea

• Constipation

• Pain during bowel movements

Having access to a toilet when needed can make outings feel safer and more manageable.

Chronic Pelvic Pain

Persistent pelvic pain can make long periods away from facilities uncomfortable. Planning toilet stops in advance can help reduce anxiety and support symptom management.

Pregnancy, Postpartum and Continence Concerns

Many people experience temporary or ongoing continence concerns throughout pregnancy, after childbirth, during perimenopause, or as a result of chronic health conditions.

The National Public Toilet Map provides reassurance that facilities can be located when needed.

Planning Ahead Can Reduce Anxiety

One of the most common challenges people living with chronic illness face is uncertainty.

Questions like:

• "Will there be a toilet nearby?"

• "What if I need one urgently?"

• "Will it be accessible?"

• "Will there be a sanitary disposal bin?"

Can create significant stress before even leaving home.

Using tools like the National Public Toilet Map can help you feel more prepared, giving you greater confidence to attend appointments, social events, work, study, travel, and everyday activities.

How to Access the Map

The National Public Toilet Map is free and easy to use.

Visit: https://toiletmap.gov.au/

You can search by location, browse nearby facilities, and even use the mobile app while travelling.

Another Resource for Your Toolbox

At QENDO, we know that managing pelvic health conditions isn't just about treatments and medical appointments. It's also about finding practical solutions that help you navigate everyday life with greater confidence.

The National Public Toilet Map is one simple but powerful tool that can help reduce stress, support independence, and make planning ahead easier.

Because everyone deserves to feel confident leaving the house without worrying about where the nearest bathroom is.

Need support?

 Visit QENDO's resources and support services to connect with information, education, and community support for endometriosis, adenomyosis, pelvic pain, infertility, and related conditions.

Tiredness. Dizziness. Pale skin. Breathlessness. Rapid/irregular heartbeat. Poor concentration. Increased risk of infection. 

Some of these symptoms may not be from endometriosis or adenomyosis alone — iron deficiency could also be contributing.

Iron and its job in the body: 

Iron is an essential mineral involved in several important proteins in the body, including haemoglobin. The body cannot produce iron itself; therefore, we must consume it through our diet. Haemoglobin helps transport oxygen around the body to tissues and organs, supporting energy production and normal body function [3].

Every time blood is lost, iron is lost too. Over time, this can deplete iron stores and lead to iron deficiency. If iron levels become low enough to affect red blood cell production, iron-deficiency anaemia can develop [3].

Why is iron deficiency common with endometriosis & adenomyosis

1. Heavy and/or prolonged menstrual bleeding 

One of the biggest drivers of iron deficiency for female+ is heavy menstrual bleeding (HMB) [1,2,4,5]. Research suggests that up to 68% of people with endometriosis experience HMB, likely due to a 23% overlap with adenomyosis [1].

While an Australian study found iron deficiency was affects 22% of women with endometriosis versus 17% among those without endometriosis [4]. This Australian study also highlighted broader healthcare concerns: iron deficiency remains under-recognised and under-diagnosed in many people with endometriosis [4].

People with HMB may lose 5–6 times more iron per cycle compared to those without heavy bleeding.4 People with endometriosis and adenomyosis may also experience prolonged bleeding (>7 days) [4]. When this occurs alongside a low dietary iron intake and HMB, this can also contribute to depleting iron stores in for female+) [4].

An important takeaway from this study is that many people don’t realise their bleeding is considered heavy.1 Our QENDO Care Dietitian, Alannah, was certainly in this boat before beginning her diagnosis trek — and maybe you are too? 

2. Chronic inflammation may affect iron regulation

Chronic inflammation can also affect how iron is regulated in the body. Endometriosis’s inflammatory response, outlined in Figure 1, can influence a hormone called hepcidin. When hepcidin levels rise, they reduce the body’s ability to absorb iron from the gut and trap iron within cells rather than making it available in the bloodstream [4]. 

Over time, this can contribute to lower circulating iron levels and increase the risk of iron deficiency, even if dietary intake is adequate. This means some people may not only be losing more iron through HMB — they may also be less efficient at absorbing it [4]. 

What your iron studies blood work means

Healthcare providers use the iron studies blood test to measure the amount of iron in your body, as well as two substances involved in transporting iron in the body and storing it.

The 4 Main Treatment Options for Iron Deficiency

Option 1: Iron supplements

Iron supplements are often a first-line strategy used to improve iron levels. But they’re not your only option, particularly if you experience the uncomfortable common side effects, including:

• Nausea

• Constipation

• Loose stools

• Darker stools 

• Stomach pain or discomfort

Option 2: Boosting iron-rich foods

Food-first strategies can play an important role in both initial treatment and preventing recurrent iron deficiency with or without anaemia in the long-term. To boost iron-rich foods in your diet, I recommend pairing 2-3 animal and plant-based iron-rich food sources together when you build a main meal [3].

Animal-based iron-rich foods

Animal-based sources provide haem iron, which is more easily absorbed by the body.

Plant-based iron-rich foods

Plant-based sources provide non-haem iron, which is less readily absorbed by the body.

Foods and drinks that influence iron absorption

You can boost iron absorption through the below food pairings [3].

• Vitamin C helps your body absorb plant-based iron more effectively, so try pairing iron-rich plant foods with vitamin C-rich foods at meals.

• Animal-based iron sources like meat, fish, and poultry can also help increase absorption of plant-based iron when eaten together. E.g., In a wholemeal pasta dish, cook a creamy based sauce, with salmon, spinach and green beans. 

• Cooking some plant foods (like spinach or silverbeet) can also improve the amount of iron available for your body to absorb.

Foods and drinks to avoid pairing with your iron sources [3]:

• Including tea, coffee, wine, calcium-rich foods (like dairy), zinc, unprocessed bran, soy proteins, and phytates found in legumes and wholegrains. To help maximise iron absorption, try having these at different times to your iron-rich meals or supplements.

Option 3: The Iron Fish or Iron Leaf

The Lucky Iron Fish or Iron Leaf is a reusable cooking tool designed to increase the iron content of foods and liquids.9 Add the Iron Fish or Iron Leaf to boiling liquid-based meals like:

• Soups

• Curries

• Rice dishes

• Pasta dishes

• Stews

• Porridge

• Plain water to refrigerate 

After boiling for around 10 minutes, the meal becomes iron-fortified.

Option 4: Iron infusions

Iron infusions are the fastest way to restore iron stores and may be appropriate when:

• Iron supplements have been ineffective or you haven’t tolerated it 

• A clinical need for rapid iron supply (eg. where there is insufficient time to correct iron deficiency before non-deferrable surgery)

• Intestinal malabsorption

• Ongoing iron (ie. blood) losses that exceed absorptive capacity

Adapted from: RACGP Patient blood management [10].

Even after an infusion, ongoing nutrition strategies (option 1 + 2 +/- 3) are still important to help maintain iron stores long-term — especially if heavy bleeding continues.

What could a week of iron support look like?

Monday

• Oats with strawberries and pepitas

• Wholegrain sandwich with tuna and salad + piece of fruit 

• Chickpea curry with spinach and green peas

• 1 maltofer iron supplement + orange juice

Tuesday

• Eggs (1-2) on iron-fortified wholemeal toast (1-2)

• Four-bean mix salad with lemon juice dressing, wholegrain roll (1) and pine nuts

• Beef stir fry with broccoli, green beans and capsicum

Wednesday

• Iron-fortified cereal (e.g. Weetbix) with milk and dried apricots and sultanas

• Tuna pasta with spinach + pine nuts

• Lentil soup with lemon juice

• 1 maltofer iron supplement + orange juice

Thursday

• Baked beans on toast

• Greek bowl with salmon and quinoa

• Spaghetti bolognese containing ½ beef mince and ½ brown lentils, tomato-based sauce and pasta + baby spinach side salad 

Friday

• Wholemeal toast with peanut butter + piece of fruit 

• Chicken thigh rice bowl with greens

• Leftovers of spaghetti bolognese from last night

• 1 maltofer iron supplement + orange juice

Saturday

• Sardines or baked beans on toast + tomato + spinach cooked

• Wholegrain wrap with egg, hummus and salad + piece of fruit 

• Tofu stir fry with broccoli and cashews

Sunday

• Porridge with kiwi fruit (2), pepitas and chia seeds

• Wholegrain sandwich with chicken and salad + piece of fruit 

• Leftovers of tofu stir fry from last night 

• 1 maltofer iron supplement + orange juice

Snacks

• Cashews and dried apricots snack plate

• Fresh fruit 

• 3-4 heaped teaspoons Milo mixed in milk 

• Wholegrain crackers + cheese or hummus + tomato 

Adapted from: Queensland Health NEMO: Iron [8].

Final thoughts

Iron deficiency with or without anaemia is incredibly common in people with endometriosis and adenomyosis — but that doesn’t mean it should be normalised.

The good news?
There are multiple evidence-based ways to support iron levels, and treatment can be tailored to your body, symptoms, values, and preferences.

Sources:

[1] https://doi.org/10.1002/ijgo.15994

[2] https://doi.org/10.1007/s12325-020-01564-y

[3] Iron | Eat For Health

[4] https://doi.org/10.1016/j.whi.2024.03.004

[5] https://www.sciencedirect.com/topics/pharmacology-toxicology-and-pharmaceutical-science/menorrhagia

[6] https://doi.org/10.1016/j.xcrm.2023.101250

[7] https://ptex.au/content/pdf/1561%20PTEx%20A4%20Iron%20Studies_fin.pdf

[8] https://www.bing.com/ck/a?!&&p=78b3aae02abfb95f1fbf5ccd751ab40a16ffb0c0d9b9d56f9fa1a22808974226JmltdHM9MTc3OTA2MjQwMA&ptn=3&ver=2&hsh=4&fclid=0fbeb582-b81b-6206-33c0-a2dfb94863c4&psq=NEMO+iron&u=a1aHR0cHM6Ly93d3cuaGVhbHRoLnFsZC5nb3YuYXUvX19kYXRhL2Fzc2V0cy9wZGZfZmlsZS8wMDMyLzE0Nzk3NC9nZW5lcmFsX2lyb24ucGRm

[9] Lucky Iron Fish – Lucky Iron Life or Lucky Iron Leaf – Lucky Iron Life

[10] RACGP - Patient blood management – the GP’s guide

Disclaimer: This article is intended for general information only and does not constitute medical advice. Please consult a qualified healthcare professional regarding your individual circumstances.

Need support or interested in seeing Nutritionist Alannah? Visit qendo.org.au/care to connect with support services and explore available care options.

For many people living with endometriosis, adenomyosis and chronic pelvic pain, Zoladex has been an important treatment option that has helped manage symptoms, reduce pain, improve quality of life, and in some cases support fertility and surgical planning.

We recognise that Zoladex is not the right treatment for everyone. Like all medications, treatment decisions should be individualised and made between a patient and their healthcare team.

However, for some people, Zoladex has been life-changing.

At a time when people living with endometriosis and pelvic pain already face limited treatment options, long diagnostic delays, significant out-of-pocket healthcare costs, workforce impacts, and ongoing barriers to care, the removal of an established treatment option raises serious concerns.

QENDO is particularly concerned about the financial impact this decision may have on patients who are now being forced to consider alternative treatment pathways. Many alternative options involve additional specialist appointments, medication changes, investigations, surgery, fertility planning, or treatments that may not be equally effective or accessible.

People living with endometriosis and pelvic pain are already carrying a significant financial burden. They should not be expected to absorb yet another cost because an effective treatment option has been removed from the market.

Importantly, our understanding is that this decision is a commercial decision rather than one related to the safety or effectiveness of the medication.

This raises a broader question for government and policymakers:

• Why are Australians losing access to a treatment that is working well for many people, particularly when there are already so few options available?

We also note that goserelin continues to play an important role in other areas of healthcare, including prostate cancer treatment. This decision highlights the need for transparent discussions about access, supply, equity and continuity of care for all patient groups impacted.

QENDO is actively engaging with decision-makers, clinicians, government representatives, consumer advocates, and partner organisations across the women’s health and cancer sectors to better understand the implications of this withdrawal and to raise the concerns being shared by our community.

We are calling on governments and relevant stakeholders to:

• Ensure clear transition pathways for people currently using Zoladex.

• Provide financial support measures for patients who may be required to change treatment.

• Investigate options to maintain access where clinically appropriate.

• Improve transparency around decisions that impact access to essential treatments.

• Recognise that treatment choice matters, particularly in conditions where options are already limited.

Quote attributable to Jess Taylor, CEO, QENDO

“People living with endometriosis already spend years fighting to be believed, years waiting for diagnosis, and thousands of dollars trying to access care. Removing a treatment option that is working for many people is simply not good enough.”

“We know Zoladex is not the right option for everyone. But for some people it has been genuinely life-changing. In a healthcare system where treatment options are already limited, taking another option off the table without adequate alternatives leaves patients carrying the burden.”

“Women and people living with endometriosis should not be forced to navigate additional costs, treatment uncertainty, or disruption to their care because of a commercial decision. Government must step in to ensure patients are supported, protected, and not left behind.”

QENDO will continue advocating on behalf of the community and will provide updates as further information becomes available. We encourage anyone currently taking Zoladex to speak with their treating specialist before making any changes to their treatment plan.

Pain with intimacy is incredibly common in endometriosis — but it is not something you should simply have to “put up with.”

As a pelvic health physiotherapist, one of the most important things I want people to know is this:

Pain with sex is real.
It is common in pelvic pain conditions.
And meaningful improvement is absolutely possible.

Understanding Sexual Pain in Endometriosis

Sexual pain in endometriosis is often multifactorial, meaning there is usually more than one contributing factor involved.

Pain may be influenced by:

• Inflammation from endometriosis

• Pelvic floor muscle tension or overactivity

• Nervous system sensitisation

• Bladder or bowel symptoms

• Hormonal changes

• Fear and anticipation of pain

• Past painful experiences

Over time, the body can become increasingly protective.

The pelvic floor muscles may tighten in anticipation of pain, the nervous system may become more sensitive, and even non-painful touch or penetration can begin to feel threatening.

This does not mean the pain is “in your head.”

It means your body has adapted to protect you — sometimes a little too strongly.

The Pelvic Floor’s Role in Sexual Pain

The pelvic floor is a group of muscles that sit at the base of the pelvis and help support the bladder, bowel and reproductive organs.

These muscles also play an important role in:

• Sexual function

• Penetration

• Arousal

• Orgasm

• Relaxation

In people with pelvic pain, these muscles often become:

• Tight

• Guarded

• Overactive

• Pain-sensitive

• Poorly coordinated

This can contribute to:

• Pain with penetration

• Burning or tearing sensations

• Deep pelvic pain

• Pain after sex

• Post-orgasmic pain/spasm

• Difficulty relaxing during intimacy

One of the biggest misconceptions about pelvic floor physiotherapy is that it is always about strengthening.

In pelvic pain, the issue is often not weakness — it is tension and protection. Therefore, pelvic floor management often targets relaxation and down-training as opposed to “kegels”. 

Why Pain Can Continue Even After Surgery

Many people feel confused or disheartened when pain persists after endometriosis surgery.

This is because pain is not always driven solely by lesions.

Persistent pain can involve:

• Nervous system sensitivity

• Pelvic floor muscle guarding

• Learned protection patterns

• Cross-talk between pelvic organs

When pain has existed for a long time, the nervous system can become highly efficient at detecting danger.

The positive news is that the nervous system is adaptable — and can also be retrained.

How Pelvic Health Physiotherapy Can Help

Pelvic health physiotherapy aims to address the multiple contributors to sexual pain in a safe, supportive and collaborative way.

Treatment may include:

Education and Understanding Pain

Understanding why pain occurs can significantly reduce fear and anxiety around symptoms.

When people understand that pain does not always equal damage, it often helps reduce the pain–fear–guarding cycle.

Pelvic Floor Muscle Relaxation

This may include:

• Breathing exercises

• Pelvic stretches

• Pelvic floor “down-training”

• Relaxation strategies

• Gentle manual therapy and release

• Learning how to release tension

The goal is to help the pelvic floor feel safe enough to relax again.

Nervous System Regulation

Pain is influenced by the nervous system.

Strategies such as:

• Diaphragmatic breathing

• Pacing

• Mindfulness

• Movement

• Relaxation techniques

can help calm an overprotective system.

Graded Exposure

When penetration has become painful, the brain can begin to associate intimacy with threat or danger.

Graded exposure approaches, including dilator therapy when appropriate, can help gently retrain both the tissues and the nervous system.

Importantly, this should always happen at a pace that feels safe and manageable for the individual.

Practical Strategies for Intimacy

Simple adjustments can make a significant difference, including:

• Using plenty of lubrication — friction can aggravate sensitive tissues and trigger pain, especially when the pelvic floor and nervous system are already on high alert. Lubrication helps improve comfort and reduce irritation (think – slidin’ and glidin’).

• Prioritising arousal and foreplay

• Trying positions that reduce pelvic floor tension

• Focusing on communication and pacing

• Redefining intimacy beyond penetration

Pleasure should not require endurance or “pushing through.”

Addressing the Emotional Impact

Sexual pain can affect far more than just the body.

It can impact:

• Relationships

• Confidence

• Identity

• Mental health

• Feelings of femininity or connection

Many people living with endometriosis carry guilt, frustration or fear around intimacy.

These feelings are valid.

Creating a safe space where people feel listened to, believed and supported is a crucial part of pelvic pain care.

Additional Tools That May Help

There are also a number of supportive tools and products that can be helpful when managing sexual pain, particularly when used alongside pelvic health physiotherapy and a graded, 

individualised approach. Some common ones are:

The Ohnut

The Ohnut is a wearable buffer ring designed to limit depth of penetration. For people who experience deep pelvic pain with intercourse — which is very common in endometriosis — this can help reduce irritation to sensitive pelvic structures and allow intimacy to feel safer and more comfortable. One of the biggest benefits is that it gives individuals greater control over depth, which can help reduce fear and anticipatory guarding. It can also be used as a great mode of graded exposure to explore deeper penetrating positions. You can start with all 3 rings, and gradually take one away as things start feeling more comfortable.

Vaginal Dilators

Vaginal dilators are commonly used in pelvic health physiotherapy as part of a graded exposure approach to painful penetration.

Dilators can help:

• Gradually stretch and desensitise the pelvic floor muscles 

• Improve tolerance to penetration 

• Reduce fear and anticipation of pain 

• Retrain the nervous system to perceive penetration as safe rather than threatening 

Importantly, dilator therapy should never feel forced or overwhelming. Progress is gradual, collaborative and always guided by comfort and safety.

Pelvic Wands

A vibrating pelvic wand can be a helpful self-management tool for some individuals with pelvic floor tension or pelvic floor tension myalgia (aka – tight and painful pelvic floor muscles).

These devices may assist with:

• Gentle release of tight pelvic floor muscles 

• Improving body awareness 

• Reducing muscle guarding 

• Desensitising tender areas 

• Increasing blood flow and promoting relaxation through vibration and nervous system calming 

When appropriate, pelvic wands can help individuals feel more empowered and in control of their symptoms between physiotherapy sessions.

Kiwi

The Kiwi is a vibrating pelvic relaxation massager designed to enhance external stimulation and arousal.

For individuals with pelvic pain, adequate arousal is incredibly important because it:

• Increases blood flow 

• Improves tissue elasticity 

• Reduces friction 

• Helps the pelvic floor relax 

• Lowers pain sensitivity 

Products that support arousal and pleasure can help shift intimacy away from fear, pressure or “enduring pain,” and back toward positive, safe and pleasurable experiences.

Ultimately, these tools are not about “fixing” your body — they are about helping your body and nervous system feel safer, more supported and more comfortable during intimacy.

A Final Reminder

If you experience pain with sex, you are not broken.

Your body has been trying to protect you.

With the right support, education and treatment approach, it is absolutely possible to reduce pain, rebuild confidence and restore a sense of safety within your body again.

You deserve care that looks at the whole picture — not just one symptom in isolation.

And most importantly…
You deserve to be heard.

If you would like support with sexual pain, pelvic pain or endometriosis-related symptoms, speaking with a pelvic health physiotherapist may be a helpful next step.

Disclaimer: This article is intended for general information only and does not constitute medical advice. Please consult a qualified healthcare professional regarding your individual circumstances.

Need support or interested in seeing Pelvic Health Physio Sophie? Visit qendo.org.au/care to connect with support services and explore available care options.

The forgotten cousin. 

The subtle culprit. 

When I went in for my first deep-infiltrating endometriosis ultrasound, I did not expect to come out and be told I had adenomyosis. I was barely 22, and all I had heard about this condition was that it was rare, usually only happened to people in their 40s post pregnancy, and was so awful only a hysterectomy would help. Being followed up with “your fertility looks fine so far though” “we can put in a mirena to keep it that way” was not particularly reassuring to someone who still felt like if she fell pregnant she’d be shipped off to be on an MTV episode. More than two years later, I look back on that terrified girl, sobbing as she walks back to the car, and all I want is to wrap my arms around her. 

Now, I know that adenomyosis ISN'T uncommon, and obviously it occurs in young people. I don’t have to have a hysterectomy, and if I do want to have one later on, that’s still an option. For a condition with a prevalence rate of up to 35 per cent of women too many people have never heard of it before. “Remind me what that is again?” say a few healthcare providers. “Don’t you mean endometriosis?” says a colleague. Before my diagnosis I had only come across mentions of adenomyosis very briefly when researching endo. Those mentions were by and large particularly doom and gloom. There is also somewhat of a cultural tendency to dismiss any diagnosis that hasn’t resulted from a hysterectomy, which still can feel belittling on my bad days. However there is hope. As technology improves so do options for diagnosis. I had countless transvaginal ultrasounds that never picked up on my condition, it was not until a gynaecologist (who had conducted research on ultrasound techniques to find endometriosis and other gynaecological lesions) performed the scan that it was identified. With increased funding for advanced ultrasound and more training for radiologists, sonographers, and other medical specialists, access to these scans is getting better every day. There is a long way to go, and we need to be talking about these conditions, not just endometriosis in wider society. The conversation around endo has paved the way for a broader conversation around whole body disease, gynaecological and endocrinological conditions like adenomyosis and polycystic ovarian syndrome. One day we will be in a place where these conditions are as discussed as diabetes or dementia, you and I are a part of that journey. 

Signs and symptoms of adenomyosis: 

• Severe menstrual cramps 

• Prolonged and heavy periods 

• Chronic pelvic pain 

• Pain associated with sexual intercourse 

• Pressure symptoms on the bowel and/or bladder

• Feelings of abdominal pressure, bloating, and/or tenderness

• Lower back pain, particularly when radiating down the inner thighs 

• Infertility and/or recurrent miscarriages 

I am lucky enough that my body accepted the mirena within a couple of months, and that it works well at suppressing many of my symptoms alongside a progesterone-only pill. Though I still struggle on almost a daily basis, the degree of pain is greatly reduced. Like endometriosis, adenomyosis is significantly correlated with chronic pelvic pain, and the best treatment modality is multidisciplinary care. The more we do to enhance accessibility to multidisciplinary healthcare, the better off people with chronic pelvic pain (regardless of cause) will be. 

Management options for pelvic pain associated with adenomyosis: 

• Pelvic floor physiotherapy

• Complementary therapies like acupuncture or naturopathy 

• Heat relief 

• Magnesium supplementation 

• Nutrition and dietetics 

• Treatment from a pain specialist 

• Massage 

Blog contributed by Jo from Scarletperiod.com

When you live with endometriosis, explaining what’s happening in your body can be difficult. But opening up to a partner can turn confusion into real support and strengthen your relationship in the process.

When my relationship was new, I tried to hide my endometriosis. I didn’t want to burden him or ruin the mood by talking about pain, fatigue, or cancelled plans. I wanted to be the easy, fun version of myself. So, when symptoms hit, I pushed through or stayed quiet.

But silence creates confusion.

Because I wasn’t explaining what was happening, he started wondering if something else was wrong. And meanwhile I felt frustrated that he didn’t understand what I was dealing with. The truth was simple: I hadn’t given him the chance.

Once I opened up about my endometriosis, the guessing stopped. He understood what was happening, and I finally felt supported instead of alone in it.

Endometriosis might be a medical condition, but it quickly becomes part of daily life. And that means it inevitably becomes part of a relationship too. Here are a few things that helped me navigate those conversations.

Start the conversation before a crisis

Many people only mention endometriosis when a flare hits. By then the conversation is already loaded with pain, stress, and cancelled plans. 

Bring it up earlier, in a calm moment before symptoms take over. You don’t need a full medical briefing, just give context, such as: “I have endometriosis. It can cause pain and fatigue sometimes, and occasionally it affects my plans. I just wanted you to know.”

That simple honesty removes the mystery. When symptoms show up later, there’s already context for what’s happening.

Help them understand what a flare actually feels like

One challenge with endometriosis is that the symptoms are often invisible. Someone can look completely fine while dealing with significant pain, nausea, or exhaustion. That makes it harder for others to understand what’s happening.

Partners often want to help but don’t know what the experience is actually like. Being specific helps, such as:

• what your pain typically feels like

• how long flares tend to last

• what tends to trigger symptoms

• what usually helps you manage them

For some people, flares mean intense pelvic pain. For others it might be deep fatigue, back pain, digestive issues, or brain fog. The clearer you are about your experience, the easier it is for someone to understand.

Be clear about what support actually looks like

One of the most helpful things I learned is that many partners genuinely want to help. They just don’t know how. 

Instead of hoping they’ll guess, it helps to be clear about what support looks like, such as:

• helping with errands or meals during a flare

• taking over a few practical tasks when pain is high

• understanding when plans need to change

• giving you space to rest without pressure

In my own relationship, once my partner recognised the signs that a flare was coming, he knew when to step in. Sometimes that meant handling everyday admin. Sometimes it meant simply checking in and giving me space.

Share the emotional side too

Endometriosis isn’t only physical. Many people also carry frustration, grief, uncertainty, and exhaustion from years of managing symptoms, appointments, and treatment decisions.

Partners often see the pain but not the emotional load unless it’s explained. Start by talking about:

• the stress of living with ongoing pain

• the mental load of appointments and treatments

• fears about future health or fertility

• the exhaustion that comes with chronic illness

These conversations help someone understand that endometriosis isn’t just something that appears during a flare. It’s something that can shape everyday life in ways that aren’t always visible.

Talk about intimacy openly

Intimacy is another area endometriosis can affect, which makes honest conversations important. Pain, fatigue, medication side effects, and recovery from surgery can all change how comfortable your body feels at different times.

If it isn’t talked about, partners can misread the situation. Open communication helps prevent that.

Sometimes it’s as simple as explaining that certain symptoms or times of the cycle make your body more sensitive. Some couples also find it helpful to talk about other ways to stay close during difficult periods.

Learn about endometriosis together

Another helpful step is learning about endometriosis together. Many partners have never heard of the condition until someone they care about is diagnosed. Sharing reliable information can help them understand, such as:

• articles from reputable health organisations

• podcasts or documentaries about endometriosis

• attending medical appointments together when appropriate

Learning together can shift the dynamic from “your condition” to something you’re navigating as a team.

Remember that support takes practice

Endometriosis is complex. Even many healthcare professionals struggle to fully understand it. And your partner is learning too.

They may ask questions, misunderstand things, or say something clumsy occasionally. That’s part of learning how to support someone living with a chronic condition. 

In my own relationship, opening up about endometriosis brought us closer than I expected. My partner learned to recognise the signs of a flare before I said anything and stepped in with practical help when I needed it most. But that only happened once I stopped pretending everything was fine.

Letting someone see the reality of what you’re dealing with can feel vulnerable. But it also creates the possibility for deeper understanding, trust, and partnership. And when you’re living with endometriosis, that kind of support can make a real difference.

END

Jo Barry is the owner of Scarlet Period, a Melbourne-based, 100% independent brand redefining period care through design. Living with stage 4 endometriosis and adenomyosis, she created rae, a sustainable, wearable heat device born from lived experience. Through Scarlet, she advocates for better care, smarter design, and honest conversations around menstrual and pelvic pain.

• FOLLOW JO BARRY HERE: https://www.instagram.com/jojo_barry/  

• FOLLOW SCARLET HERE

  • https://www.instagram.com/scarlet_period/ 

  • https://www.tiktok.com/@scarletperiod 

• VISIT SCARLET HERE: https://scarletperiod.com/ 

Written by QENDO Mentor Program Team, Ash & Dajana

From QENDO 

At QENDO, we know that living with endometriosis is not just about managing symptoms. 

It’s about navigating conversations.

Explaining yourself. 

Deciding how much to share. 

Protecting your energy while still wanting to be understood. 

Endometriosis is often invisible — but its impact is not. And yet, many people living with it feel they must soften, justify, or minimise their experience just to make others comfortable.

This guide exists to help change that.

Not by pushing. 

Not by over-explaining. 

But by offering language that feels safe, human, and honest — so conversations can move from confusion to compassion. 

One of the ways to Explain Endometriosis
You don’t owe anyone a medical breakdown. You don’t need the perfect explanation. You’re allowed to keep it simple. 

You might say:

“Endometriosis is a chronic inflammatory condition. It causes ongoing pain, fatigue, and other symptoms that can change from day to day.”

Or, if less detail feels better:

“I live with a chronic condition called endometriosis. Some days I function well, and other days my body needs more care and rest.”

Both are true. Both are enough. 

Speaking About the Impact (Not Just the Diagnosis)

Sometimes people understand impact more than definitions. 

If it feels right, you might share what endometriosis looks like in real life:

• Pain can flare suddenly, even if you seemed okay earlier.

• Fatigue isn’t the same as being tired — rest doesn’t always resolve it.

• Stress, pressure or pushing through can make symptoms worse. 

This isn’t oversharing. It’s offering context. 

Having These Conversations in Different Spaces

With Family and Friends

Loved ones often want to help, but don’t always know how. 

Gentle language can sound like:

“I don’t always need advice. Sometimes I just need understanding and flexibility.”

“If I cancel plans, it’s not about how much I care — it’s about managing my health.”

Clear communication can protect connection.

With Partners

Endometriosis can affect energy, intimacy, emotions and capacity — often unpredictably. 

You might say:

“My symptoms aren’t consistent, but feeling believed makes a huge difference.”

“Support looks like listening, patience, and adapting together.”

Healthy relationships are built on understanding, not expectation. 

With Colleagues or Workplaces

You are not required to disclose everything to deserve respect. 

Professional, boundary-respecting options include:

“I manage a chronic health condition that can flare unexpectedly. At times, I may need flexibility, while remaining committed to my work.”

“Open communication around capacity helps me perform at my best.”

Advocacy doesn’t have to be loud to be valid. 

When Understanding Isn’t Met

Not everyone will respond with empathy — and that can be painful.

It’s okay to protect yourself with language like:

“I’m not looking to debate my experience,” “This condition is real, even when it’s not visible,” and “I’m choosing to prioritise my health today.”

Boundaries are not walls. They are care.

Resources That Can Help Carry the Conversation

Sometimes sharing a resource feels easier than finding the words.

You might choose:

• QENDO

• Trusted GP or specialist information sheets

• Articles or podcasts that reflect lived experience. 

You don’t have to educate alone. 

A Note to Those Living with Endometriosis

You are not weak for needing rest. 

You are not unreliable because your capacity changes. 

You are not a burden for advocating for yourself. 

You are navigating a chronic condition with strength — often quietly. 

And that deserves compassion. 

In partnership with TSUNO

Periods. We all have them, but how often do we actually talk about them? Pads are one of the most common ways people manage their periods, yet, they’re also one of the least discussed. It’s time to break the stigma and start having honest, open conversations about how we manage our flows.

Do You Flood?

If you’ve ever felt like your period starts off light and then suddenly becomes a waterfall, you’re not alone. “Flooding” when your flow is so heavy that it soaks through a pad or tampon in an hour or less, can happen to anyone. It might be linked to hormonal changes, fibroids, endometriosis, or just your body’s unique rhythm. If it happens regularly, it’s worth chatting with your GP or gynaecologist.

There’s no such thing as one-size-fits-all when it comes to periods, your experience is valid, whatever it looks like.

Do You Know What’s Normal?

We’re often told what’s “normal,” but in reality, menstrual flow can vary widely. Common discourse states the average person loses around 30–80ml of blood during their period, roughly two to six tablespoons. This amount can be misleading because it actually only represents the blood content of a period. Endometrial tissues, cervical mucus, and vaginal secretions also make up a period. So if you’re looking at a teaspoon and thinking, ‘I bleed waaaaay more than that!’, this might be the reason.

What matters most is what feels normal for you. How often you change your pad, how heavy your flow feels, and how it impacts your life.

If you’re soaking through pads every hour, passing large clots, or feeling dizzy or tired, it might be time to reach out for support. Heavy bleeding can be a sign of an underlying condition and you deserve care and answers.

What’s Your Favourite Brand?

When it comes to pads, we love TSUNO pads. Their pads are made from sustainable bamboo fibre, designed to be gentle on your body and the planet. Plus, 50% of their profits go towards empowering girls and women through education and menstrual health projects.

Finding the right brand is personal. Some love the softness of organic cotton, others prefer the slimness of ultra-thin styles. The key? Choose what makes you feel comfortable and confident, there’s no “best” brand, only the best one for you.

How Many Times a Day Do You Change Them?

This can depend on your flow, the type of pad, and your comfort level. As a general guide, changing your pad every 4–6 hours is ideal to stay fresh and reduce the risk of irritation or infection.
If you’re someone with a heavier flow or longer days out, you might change more often, and that’s okay! The goal is comfort and care, not comparison.

Overnight vs Regular Pads

Overnight pads are designed with extra length and absorbency to give you peace of mind while you sleep. If you’ve ever woken up to a leak (we’ve all been there), switching to an overnight pad might help.

Regular pads, on the other hand, are great for daytime, lighter, flexible, and discreet. Mixing and matching both types depending on your flow can make a big difference.

Let’s Break the Stigma

Talking about periods and pads shouldn’t feel awkward. The more we normalise these conversations, the more we empower each other. Whether it’s sharing recommendations, not shaming when someone leaks, or simply asking, “Hey, what do you use,” it all helps to dismantle the shame that still lingers around menstruation.

Do You Share Your Pad Choices with Your Friends?

It might sound funny, but it’s actually a great conversation starter. Just like we share skincare tips or snack recommendations, chatting about what works for your period can help others feel seen and supported.

So next time you’re catching up with your mates, why not ask?
“Hey, have you ever tried TSUNO pads?”

You might be surprised how quickly that simple question turns into a real, open, and stigma-busting conversation.

QENDO x TSUNO
Because talking about periods shouldn’t be taboo, it should be empowering.

While everyone is at risk of heat related illnesses, those who live with chronic illnesses like Endometriosis and/or chronic pain are at great risk. It’s important to understand the impacts that extreme heat can have on your health, and know the strategies that you can implement to overcome these risks. 

General Strategies include 

1. Learning about Heatwaves from The Bureau of Meteorology https://www.bom.gov.au/resources/learn-and-explore/heatwave-knowledge-centre

2. Register for Heat Wave Warnings using the BOM Weather App

3. Make a Heat Wave Health Plan with your GP. Some reference material is available here: 

   https://heatvulnerabilityproject.org.au/wp-content/uploads/2025/09/Individual-Heat-Action-Planning.pdf

   https://www.sahealth.sa.gov.au/wps/wcm/connect/5d67515b-e98b-4ed8-8e38-e3f1929e6f83/Guidance+for+General+Practice.pdf

The Risks

Dehydration

Heat increases risk of dehydration, alongside the regular impacts of dehydration, those with Endometriosis can experience increased inflammation, bloating and cramping. 

Heat And Nervous System Hypersensitivity

Endometriosis and chronic pain are both known to elevate nervous system sensitivity, and the physical impacts of heat stress will likely exacerbate this leading to fatigue, increased pain, sleep disruption, and psychological distress. 

Heat Related Illness

Heat related illnesses include heat exhaustion, heat stroke, heat cramps and heat rash. While everyone can develop these illnesses, Endometriosis, as a chronic illness, means you are more vulnerable. Your body is already working to overcome inflammation, cramping, and other symptoms, so the pathway to heat related illness is shorter. 

Medication 

It is important to understand the impact that heat can have on your medications. Additionally, the effectiveness or impact of medications can change depending on the environment you’re in.

Diet

We often feel a reduced appetite during heatwaves, and some foods can require more energy to digest than others. Combining this with some of the inflammatory affects those with Endometriosis can experience from food, what you eat during heatwaves can really matter. 

The Strategies

Dehydration

Ensure that you have water available, and are drinking regularly. Consider adding electrolyte drinks if needed to maintain hydration. Generally thirst indicates that you are beginning to become dehydrated. Make sure you listen to your body. Regular consumption of smaller amounts of water is best. 

Heat And Nervous System Hypersensitivity andHeat Related Illness

Reduce your exposure to heat. Where possible, stay inside to avoid extreme heat, using cooling systems like fans or air conditioners to reduce your exposure to the problem. If you can’t avoid the exposure, than work to reduce its impact by;

1. Participating in water based activities for exercise alternatives 

2. Wearing sun protection; hat, sunscreen, long sleeves, wet washer around the neck, sun umbrella 

3. Seek shade and or shelter where possible 

4. Stay hydrated

Medication 

Check the storage temperatures of your medications and ensure you can keep them at appropriate temperatures, particularly if you have to travel. Ask your GP or other medical professional if there are any changes you should make to your medication regime in heatwaves. 

Diet

Mediterranean diets are generally accepted as a low inflammatory option. Additionally, consider adding foods that are high in electrolytes and avoid highlighting processed foods or substances like alcohol which increase risk of dehydration. Always consult your health professional about dietary changes. 

Reference used to make this resource

https://www.health.vic.gov.au/environmental-health/extreme-heat-information-for-clinicians

https://www.betterhealth.vic.gov.au/health/healthyliving/heat-related-health-problems

https://physiotherapieuniverselle.com/en/blogue/heat-and-chronic-pain-why-do-your-symptoms-get-worse-in-summer

https://southsidepainspecialists.com/6-tips-for-dealing-with-chronic-pain-during-hot-weather/

https://www.bom.gov.au/resources/learn-and-explore/heatwave-knowledge-centre

https://metronorth.health.qld.gov.au/news/beat-the-heat

https://www.heart.org/en/news/2024/06/26/as-summer-heat-cranks-up-our-appetites-may-cool-off

Endometriosis can be complex, confusing, and deeply frustrating — especially when the information available feels inconsistent or incomplete. Recently, we gathered your questions for a researcher specialising in endometriosis biology, pain pathways, and emerging therapies. Here’s what they had to say, distilled into an easy-to-read summary.

🔄 Does Endometriosis Really Come Back After Excision Surgery — Even With Hormonal Management?

Hormonal treatments like the Mirena IUD or continuous oral contraceptives work by suppressing estrogen, which slows the growth of endometriosis. But hormones cannot eliminate the disease entirely.

Even skilled excision surgery is not 100% effective. Tiny portions of lesions can remain, and over time these can continue to develop — even while on hormonal suppression.

📉 How Successful Is Surgery Followed by Hormonal Treatment?

Research shows recurrence rates ranging widely from 6% to about 50% within five years after surgery.

However, there's good news:
👉 People who use hormone therapy after surgery have about 2.5 times lower risk of recurrence compared to those who don’t.

While not perfect, the combination of excision and hormonal suppression is currently one of the most effective approaches for reducing recurrence risk.

🔬 How Does Journavx (Suzetrigine) Work for Endometriosis Pain?

Suzetrigine, branded as Journavx, is a new pain medication that targets specific pain pathways — without the addictive potential seen in opioid medications.

Here’s how it works:

• It selectively blocks Nav1.8 channels, which sit on peripheral pain-sensing neurons.

• These channels help transmit pain signals from the body to the spinal cord.

• By inhibiting them, suzetrigine stops pain signals before they reach the central nervous system.

It doesn’t treat endometriosis lesions, but it may offer meaningful relief for endometriosis-related pain.

🧬 Why Is Hysterectomy Sometimes Used if Endometriosis Is a Whole-Body Disease?

Although endometriosis itself is not confined to the uterus, a hysterectomy may reduce symptoms because:

• Removing the uterus and ovaries significantly reduces estrogen and progesterone production.

• Endometriosis lesions are estrogen-dependent, so reducing hormones reduces symptoms and may slow further lesion growth.
  

How is this different from a GnRH agonist (medical menopause)?

• GnRH agonists temporarily suppress hormones.

• Once you stop them, hormones (and symptoms) often return.

• A hysterectomy, in contrast, is permanent.

Importantly: A hysterectomy does not cure endometriosis, but may help some people depending on their symptom sources.

🐁 How Do Researchers Create Endometriosis in Mouse Models?

Studying endometriosis requires accurate models. Here’s how researchers do it:

1. They take small fragments of the uterine lining (from the same or a donor mouse).

2. These fragments are placed inside the abdominal cavity of another mouse.

3. The recipient mouse receives weekly estrogen injections.

4. The fragments attach to various surfaces and form lesions — just as they do in humans.

This model helps researchers test therapies, understand pain pathways, and analyse how lesions grow.

🧬 Is There a Link Between the MTHFR C677T Gene Variant and Endometriosis?

Recent studies (2023 & 2025) suggest a connection between the MTHFR C677T variant and increased risk of endometriosis.

This gene affects folate metabolism, and impaired function can lead to:

• Increased inflammation

• Greater oxidative stress

Both are known contributors to endometriosis development.

While promising, the researcher notes that their current models do not yet explore this gene variant — but that doesn’t mean the association isn’t relevant.

🎗️ If Endometriosis Lesions Grow Like Some Cancers, Why Isn’t Endo a Cancer?

Endometriosis and cancer share some biological processes — like angiogenesis (creating new blood vessels), inflammation and resistance to cell death and nerve growth.

But key differences explain why endo is not considered a cancer:

• Cancer cells grow uncontrollably and invade distant tissues (metastasis).

• Endometriosis lesions do not metastasise.

• Endo is painful and life-altering, but not life-threatening in the way malignant cancers are

💰 Is Endometriosis Research Finally Getting More Support?

Yes — but it’s still challenging.

Researchers report:

• More dedicated grants and initiatives

• Increased public interest

• Growing recognition of endometriosis as a major health priority

However, competition remains intense, and funding for basic science — the foundation of all future treatments — is still extremely limited.

🧪 When Will the New Therapeutic Antibody Be Helpful?

This emerging treatment has shown effectiveness on existing lesions, and early data suggests it may also slow new lesion formation.

However:

• It is not designed as a preventative treatment.

• It is intended for people already diagnosed with endometriosis.

There’s still a journey ahead before this therapy becomes widely available.

🌟 What’s Most Exciting in Endometriosis Research Right Now?

According to the researcher:
The possibility of a non-hormonal treatment for endometriosis.

Hormonal options remain essential, but they come with side effects and limitations. A non-hormonal therapy could be transformative — especially for those who can’t or don’t want to use hormonal suppression.

😣 What’s Most Frustrating for Endometriosis Researchers?

Their biggest barrier: funding for fundamental research.

Basic research uncovers the mechanisms that allow new treatments to be developed — but it’s often the hardest type of work to get funded. Despite this, researchers remain committed and motivated by the impact their work can have.

Final Thoughts

Endometriosis research is moving forward faster than ever — from understanding pain pathways to exploring new non-hormonal treatments. While challenges remain, the momentum is growing, and so is the hope for more effective and personalised care.

This resource has been collated by Ash, our Community & Organisational Support Officer, fellow endo warrior, and IVF veteran, who understands firsthand how important it is to have accessible and compassionate information at every step of the journey.

Disclaimer: The information below is provided for general education and awareness only. It is not intended as medical advice. Every individual’s situation is unique, and we encourage you to seek guidance from your fertility specialist or healthcare professional regarding your personal circumstances.

Does excision surgery for stage 4 endometriosis improve fertility outcomes?

Excision surgery for advanced (stage 4) endometriosis can sometimes improve the likelihood of natural conception, particularly if the fallopian tubes remain open and no other fertility factors are present. Outcomes are also influenced by age, ovarian reserve, and overall health. Some individuals may attempt natural conception after surgery before considering assisted reproductive options such as IVF. It is best to discuss timing and next steps with your fertility specialist.

What is the difference between egg and embryo freezing, and which is more effective?

Both egg and embryo freezing are established methods of fertility preservation. The most suitable approach depends on age, ovarian reserve, relationship status, and whether donor sperm is being used.

• Egg freezing preserves flexibility for future use.

• Embryo freezing may provide more certainty about outcomes, as fertilisation and early development are confirmed in advance.

For embryo transfers, both natural and medicated (hormone replacement) protocols are used. In individuals with conditions such as PCOS or endometriosis, the choice of protocol is individualised to optimise success.

How does a low AMH level affect IVF planning?

A lower AMH (anti-Müllerian hormone) level, such as 1.6 pmol/L, suggests a smaller number of eggs may be collected per cycle. Some specialists recommend creating embryos sooner in this situation, as this may improve the likelihood of successful use in future. Importantly, many people with low AMH still achieve pregnancy with IVF. The optimal pathway will depend on personal goals, partner fertility, and clinical advice.

What effect does adenomyosis have on implantation?

Moderate-to-severe adenomyosis may reduce implantation rates in some cases. Pre-treatment strategies prior to IVF or frozen embryo transfer (FET) may help improve outcomes, though this is highly individualised. Fertility specialists will tailor treatment to each person’s clinical profile.

Why might embryo numbers be low in IVF, even with male factor infertility?

Even when sperm and eggs are of good quality, not all fertilised eggs develop into viable embryos. For example, if 10 eggs are collected and 8 fertilise, only a proportion may progress to transferable or freezable embryos. This reflects natural biological variation. Egg quality, sperm quality, and laboratory conditions all contribute. Your specialist can review stimulation or laboratory strategies to support the best possible outcomes.

Can IVF make endometriosis or adenomyosis worse?

There is no strong evidence that IVF accelerates the progression of endometriosis or adenomyosis. Symptoms may fluctuate during treatment cycles due to hormone exposure, but IVF is routinely and successfully used by people with these conditions. Risks and benefits should always be reviewed with your healthcare team.

Is it necessary to pursue egg or embryo freezing immediately after excision surgery?

Fertility preservation can be undertaken either soon after excision surgery or following recovery, with generally similar outcomes. Timing should be guided by both the surgeon and fertility specialist to ensure the best balance between recovery and reproductive goals.

Should embryos be tested before transfer?

Preimplantation genetic testing for aneuploidy (PGT-A) is an option, but it is not recommended for everyone. While the test provides genetic information, it does not always predict the true potential of an embryo, and in some cases may reduce the chance of using viable embryos. Whether to proceed with testing should be carefully considered with your fertility specialist, based on age, medical history, and personal priorities.

Is an AMH of 6 considered low?

Yes, an AMH level of 6 pmol/L is typically considered in the lower range. This indicates fewer eggs may be retrieved during stimulation, but many individuals with low AMH still achieve pregnancy. AMH is only one measure of fertility potential and must be interpreted alongside age, cycle history, and ultrasound findings.

What are the chances of pregnancy with PCOS, adenomyosis, and stage 4 endometriosis?

Although these conditions add complexity, many individuals do achieve pregnancy. PCOS often comes with a higher egg reserve, which may be advantageous in IVF. Endometriosis and adenomyosis may require additional planning, but with tailored treatment strategies, pregnancy remains possible.

Is there an increased risk of OHSS in people with PCOS and high AMH?

Yes, people with PCOS and higher AMH levels may be at increased risk of ovarian hyperstimulation syndrome (OHSS). However, modern IVF protocols have significantly reduced this risk through careful dose adjustments, alternative trigger medications, and close monitoring.

Is down-regulation recommended for frozen embryo transfer in adenomyosis?

Down-regulation protocols are sometimes used to improve implantation rates in people with adenomyosis. However, this is not universally required, and other approaches may also be suitable. Treatment protocols should be tailored to the individual’s history and clinical presentation.

Key Takeaway

Endometriosis, PCOS, and adenomyosis can all influence fertility, but with personalised care, many individuals achieve successful pregnancies. Every pathway is unique, seeking advice from a fertility specialist is essential to making informed choices about treatment and timing.