Endometriosis and adenomyosis: diagnosis and management

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Endometriosis and adenomyosis are chronic conditions affecting many people with uteruses. These symptoms can be wide ranging-from absolutely nothing at all through to severely debilitating. And historically, there's been many years of delay from symptom onset to diagnosis. But fortunately, this appears to be improving. We're moving towards more non-surgical diagnostic approaches, and as of last month, we have a nationally endorsed endometriosis management plan for use in general practice.

Today on the Australian Prescriber Podcast, we hope to further improve the recognition and treatment of endometriosis and adenomyosis by updating you all on the current best practice guidance. I'm Dr Laura Beaton. I'm a GP in Melbourne, and I'm joined by fellow GP and expert in the field, Professor Danielle Mazza. Danielle is the Director of the SPHERE NHMRC [National Health and Medical Research Council] Centre for Research Excellence in Women's Sexual and Reproductive Health in Primary Care, and the Head of the Department of General Practice at Monash University.

Danielle, thank you so much for coming on the podcast today, and to you and your co-authors for this very helpful article.

Thanks for having me, Laura.

Can we start off with a bit of a reminder about what causes endometriosis and adenomyosis, because I think that's going to help us really understand a bit more about how it presents and the variety of presentations, and then leading into what we're going to be able to do about it.

Yeah, so endometriosis and adenomyosis are chronic conditions where there is the presence of endometrial-like tissue outside of its normal location. We don't really know why this occurs, and we don't have a cure for it. The difference between endometriosis and adenomyosis is in endometriosis, this endometrial-like tissue grows outside of the uterus, mainly on the pelvic organs. And in adenomyosis, it actually grows within the muscle layers of the uterus and can occur with or without endometriosis.

Given the systemic nature of these chronic conditions, it does make sense that there may be a wide range of presenting issues. What are the main symptoms that patients present with, and what are the less common ones that we might need to specifically ask about?

Yeah, so it can be very non-specific and hard to diagnose, but the more common conditions are really dysmenorrhea, so painful periods, heavy periods, and pelvic pain. They're the most usual symptoms that we get, and we actually did a study of women diagnosed with endometriosis attending general practice, and about two-thirds had at least one documented endometriosis related symptom before diagnosis, and about half had 2 or more. So in that study, the most frequent symptoms were the cyclical or persistent pelvic pain and dysmenorrhea. Interestingly, fatigue also comes up as a common symptom.

The less known presentations and the ones that are a bit more non-specific are other things like headache and urinary and bowel symptoms or back pain, pain with sexual intercourse. But these are not very specific symptoms, and so you need a little bit more working through to get to the association with endometriosis.

But I guess one of the take homes from your article and the discussion today is to consider endometriosis and adenomyosis, even if the presentation might be non-specific and maybe to pursue that a little bit further.

Yeah, and I guess we need to do that because endometriosis is so common. In Australia, the latest figures are that about 14% of women will be diagnosed with endometriosis by the age of 48. So it's a huge number. Certainly, we're seeing a lot more women coming forward to general practice, presenting with a range of symptoms and asking the question, and good on the consumer organisations like Endometriosis Australia and others that are really getting the message out there about how common endometriosis is and the need to present early.

I think it's been heartening to see a practitioner approach more towards early treatment for suspected endometriosis rather than waiting for surgical confirmation.

Yeah, I think GPs in the past have probably thought that endometriosis was a condition that needed to be treated by specialists and referred on, but there's actually a lot more that GPs can do very soon after presentation, and that approach has really been backed up by the recent national endometriosis guidelines, which are really working towards making an early diagnosis or early presumptive diagnosis and getting started quickly on therapies to try and hopefully alleviate long-term outcomes.

Thanks, Danielle. It is really helpful for all of us GPs to remember that we are well placed to start first line treatment, as well as organising further investigations and referral for those people who really do need it. Your article talks about how the quality of life impacts of endometriosis are actually really broad as well as the economic impact, and GPs are pretty well placed to look after the whole of the person. When we think about management of endometriosis, your article highlights that these are certainly oestrogen responsive conditions, and so it makes sense that many of the treatments are hormonal. But before we go into the details of these, can we just take a step back and talk about the non-hormonal treatments as well as some of the non-pharmacological approaches. Because these are helpful and I guess not everybody wants or is medically suitable for hormonal treatment.

Yeah, so I think it's really important to go back to first principles, and here we really need to do a lot of education with our patients because there's been a lot of focus recently on the fact that women often feel dismissed when they present with period pain and heavy bleeding. And there are many women who recount stories of being told that's just part of being a woman. And also there's a lot of stigma around talking about periods and women may feel uncomfortable doing so.

So when women come forward saying they've got heavy periods and a lot of period pain, it's important to explain to them that the management of this condition may involve the use of hormonal therapies to bring about less bleeding and less period pain, and that these agents are really very effective at doing so. A lot of women think they've been dismissed or they say, "I was just offered the pill. I don't need the pill. I don't want to take the pill."

And certainly worldwide, there is a turning away by particularly younger women away from hormonal contraception. They are using tracking apps and prefer to use condoms or natural fertility approaches. They don't want to put hormones in their body. There's a big turning away from hormonal contraception, probably pushed by a lot of misinformation online and social media influencers and things.

And so when we are talking to women who have presumptive endometriosis or diagnose endometriosis and we are offering the pill as one option, and you can also use progestogen only products, the implant and the IUD or Depo-Provera, you really have to explain that this is the therapy for the symptoms so that women feel more reassured and can understand why these products are being offered.

There certainly are lots of options available in Australia when we think about hormonal contraception, that actually we're using the non-contraceptive benefits here for endometriosis. Is there a particular framework that you use to guide your patient discussions when deciding which is the most appropriate one to try first?

It's really up to patient preference and whether there's any contraindications or whether women prefer a set-and-forget type approach. The guidelines set out the fact that there's no one product that works better than the other, that things like the pill or the vaginal ring or progestogen only contraceptives are all probably equally as effective. And so really you need to offer the whole gamut and work through with the patient in a very patient-centred way, what would work best for her.

And you're offering these hormonal products alongside analgesia, and it's really important also that you explain how the non-steroidal anti-inflammatory drugs can help with the pain of periods and to try and get them on board and being used as early as possible. Some say if you know that your period's about to start the next day, you might actually want to start them the day before in an effort to reduce the pain and using NSAIDs alongside with paracetamol.

These are agents that we prescribe and use all the time in general practice, so it's really important that they are the first line therapies and should be introduced as soon as possible once a presumptive diagnosis is made.

This certainly is very much in the domain of general practice. And the endometriosis management plan that's been released last month really fits well into the GP chronic condition management plan scheme. And I found that patients really appreciate having goals and specific treatments and actions that they can do in relation to all of their symptoms. Thanks for highlighting this plan in your article.

The endometriosis management plan was just released in September of 2026. So the plan was funded by the federal government as part of the National Endometriosis Action Plan, and its aim was really to re-characterise endometriosis as a chronic condition. Because again, women might present hoping that their symptoms are treated straight away and may not conceptualise this condition as a chronic condition that requires ongoing monitoring and review and potentially involvement of multidisciplinary care as well.

So we were fortunate at SPHERE in the centre that I run to get tasked with the development of this plan, and we did that in partnership with the RACGP [Royal Australian College of General Practitioners] and a wide range of stakeholders and people with lived experience of endometriosis. And the plan is freely available online on the RACGP website. It's a structured way to do chronic condition management planning that actually sets out the different kinds of problems that women can encounter with endometriosis.

And the GP or the practice nurse can go through these and prioritise these. And then what it gives you is the guideline recommendations directly into the plan. So it's a way of really getting those recommendations into your practice and helping educate both yourself and the patients about what the recommendations actually are. We've built in some fantastic resources and links, some assessment tools that you might choose to use to objectively measure the impact of endometriosis on the patient and that you can use to also guide you to assess whether there's been improvement.

You just kind of step through the plan. It's a very structured framework and at the end it gives you the chronic disease management plan that we're all very familiar with that you can download and print off or email to your patient. And we are hoping that a lot more GPs and women will use this plan to guide them in their future care of this condition.

Thanks, Danielle. It is a really wonderful resource and I think it really is going to help patients feel more comprehensively cared for and also involved in their care as well. So they might help counter that felt experience of being dismissed.

Yeah.

So when thinking about endometriosis and adenomyosis, we are well placed to do this in general practice. We're going to be starting first line treatment and it might be even reasonable after that first 3 to 6 months trying a second first line agent before referring on. What are the specific situations where you think referral for specialist input is really essential and essential early?

I think if the woman has very severe symptoms, evidence of deep endometriosis on scans and they're not responding to therapy, then the patient may require the second line treatments which need to be delivered in conjunction with the specialist input. And that's because those agents are ones that suppress menstruation through reducing oestrogen levels and they can induce kind of menopause-like symptoms and potentially reduce bone density. And so they need to be very carefully considered.

The patient also may require laparoscopic diagnosis and potentially surgery, although we're coming to understand the limitations of surgical treatment because it doesn't actually remove the cause of endometriosis. And so consideration will always be needed for continuing pharmacological therapy. When I talk about referral, it's not only to gynaecologists, but there are many women who have seen gynaecologists and continue to see us in general practice with continuing pain. And we should not hesitate to involve pain management specialists just like we do for other chronic pain conditions.

But also very important to consider working in conjunction with pelvic physiotherapists. They are doing amazing work with patients with chronic pelvic pain, helping to relieve that pain and providing women with better understanding of the nature of that pelvic pain. So they are very handy to refer onto as well.

As we move towards earlier recognition, earlier treatment, we're hoping to be able to intervene before chronic pain pathways have been pretty well activated and set in. Because you also mentioned in your article, one of the limitations potentially also of surgery, that once those chronic pain sensitization pathways have been activated, it may not be as beneficial to have surgery later on in the course of endometriosis. Do you find that that is the case in your clinical practice?

It's worthwhile getting an opinion from a gynaecologist who specialises in the treatment of endometriosis wherever possible. But certainly those chronic pain pathways are difficult to budge and there are many women who struggle with that. And so we really need to approach this in a very holistic way in managing their pain, just like we do with any other chronic pain syndrome.

Thank you for reminding us that it's not just gynaecologists we might be referring to, but our pain management colleagues and pelvic physios. Because you talk about how some of the pharmacological agents in pain management, there might not be a lot of evidence for neuromodulation, but maybe some, and certainly a bit of an avoidance of opiate analgesia as much as possible.

So we saw quite high levels of utilisation of neuromodulators in the study that we did of women with endometriosis in general practice, but there is actually very limited evidence about their effectiveness and these agents are not without side effects. And similarly, the use of opioids can be very problematic in this condition because of the potential for addiction and requirement for increasing doses. So like other pain conditions, we need to involve colleagues and utilise specialists in pain management when women reach that point.

And a final point I wanted to talk about with you today, fertility investigation and assistance, because this can be a priority and can be challenging for some people with endometriosis. What is your guidance for our listeners for when to involve assistance for fertility?

Fertility is one of the main concerns that women have with this condition. They're very worried about their potential to get pregnant. And the issue is when the treatment is hormonal contraception or second line agents that reduce oestrogen, then obviously the woman can't be receiving that kind of treatment and trying to get pregnant at the same time. So I guess we really need to be aware of other issues that might be impacting the patient's likelihood of fertility and make sure they're educated and aware about issues to do with age and fertility and ensuring that their partner also is fertile.

So I would refer early in those situations where a woman is concerned about her potential for fertility so that we can really plan towards her being able to achieve her reproductive goals and that we're not in a situation where the condition has become chronic and complex and she's in her late 30s attempting pregnancy for the first time. So this is a really important area where GPs are particularly skilled around that holistic care and being aware of all of the psychosocial issues around fertility and the impact that infertility or sub-fertility can have there. And this is where we would refer early to our reproductive health specialist colleagues to get an opinion and potentially assistance.

Thanks Danielle. Your article includes some excellent links to resources that healthcare practitioners can use. We already talked about the endometriosis management plan. Are there others you think that we should be bookmarking?

EndoZone is a fantastic site with resources for clinicians and consumers. The guidelines themselves also have a great primary care algorithm to follow. You can print out or have a look at that. We've got links to those within the endometriosis management plan. My advice for GPs is women presenting with pelvic pain, dysmenorrhea, fatigue, heavy periods, I would consider the diagnosis of endometriosis. I'd move rapidly to getting a pelvic ultrasound on those patients and commencing those first line therapies.

And because we've made a presumptive diagnosis of endometriosis, the woman's eligible for a chronic condition management plan. This is a condition that's not going to go away, that will require ongoing management throughout that woman's life. And go through and do the plan with her, show her the resources, direct her to them. Education is critical and let's help women with this very troublesome condition to hopefully achieve better health outcomes.

Thanks Danielle. What a wonderful way to wrap up. We've had a good chat today about the wide range of presenting issues for endo and adeno, and also how our structured approach is really going to help management over time and help patients manage these conditions. Thank you very much for coming on the podcast today.

Thanks for having me.

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The views of the host and the guest on this podcast are their own and may not represent Australian Prescriber or Therapeutic Guidelines. Danielle Mazza is a member of the Royal Australian and New Zealand College of Obstetrician and Gynaecologist National Endometriosis Guideline Development Group. Danielle has received research funding from Bayer, Organon and Merck Sharp & Dohme, and has been on advisory boards for Bayer, Organon, MSD and Gedeon Richter. She's a member of the Therapeutic Goods Administration Women's Health Products Working Group.

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