How Do I Know If I Have Endometriosis?

If you have been living with pain that is disproportionate to what everyone else seems to experience during their period, or if your symptoms are unexplained by anyone else, then you probably have a pretty good hunch that something is going on. Firstly, you are not imagining this. You are not overreacting. Endometriosis is a chronic disease in which endometrial tissue grows outside of the uterus. Most commonly, this occurs in the pelvic organs and in the fallopian tubes. It is estimated that one in nine Australian women suffers from this disease. However, this is one of the most undiagnosed diseases in women.

The problem lies in the fact that there are so many other health issues that display similar symptoms to those of endometriosis that it can take years to get an answer. This page will take you through the symptoms to look out for, the symptoms that your GP will be checking for, who is at greatest risk of suffering from this condition, and what to do if you are worried that something might be wrong. If you are certain that you are suffering from this condition and want to get personalised support to help you develop a treatment plan to aid you with this, then Floralia Wellness are here to help.

The first symptoms that most women notice

Endometriosis doesn't look the same in everyone. Some women have pain that interferes with their lives, while others have mild symptoms that they don't recognise until years later. However, there are certain patterns that seem to come up over and over again.

Pelvic pain that isn’t just normal period pain

The most common symptom of endometriosis is intense pain in the pelvis. For most women, pelvic pain is the first indicator that something is not right. But this pain is not just normal period pain. Normal period pain is not constant; it comes and goes, and you can predict when your period is coming. But endometriosis pain is not like that. It comes before your period and stays even after your period has stopped.

What makes endometriosis-related pelvic pain different from regular menstrual cramps is the severity and length of time it persists. While it is common for women to have painful menstrual periods, it is not normal for your pain to be severe enough to keep you out of work or have you doubled over on the bathroom floor. Another difference is the presence of chronic pelvic pain, which is pain on most days for over six months, another symptom of endometriosis that many women are unaware of.  If your pain is increasing or not responding to over-the-counter pain medications, our painful periods specialist page outlines the signs that warrant further evaluation.

The symptoms tend to get worse just before and during your period because of the change in your menstrual cycle, which leads to inflammation in your endometriosis outside the uterus. This is what leads to chronic pain.

Pain during sex, or with bowel movements and urination

Endometriosis can also cause pain that has absolutely nothing to do with your period. Pain during sex is one of the more difficult symptoms of endometriosis to talk about. This type of pain usually occurs when endometrial growths have developed in the ligaments that connect the back of the uterus to the back of the pelvis, or in the area between the uterus and the rectum.

Other painful symptoms of endometriosis include pain while urinating or having bowel movements, especially during your period. Some women experience a stabbing pain with bowel movements, or a burning pressure in their bladder that occurs when it is full. This pain is commonly thought to be due to a urinary tract infection or something going on in the digestive tract, which is why it can take so long to diagnose endometriosis.

Heavy or irregular bleeding

Not all women with endometriosis experience heavy menstrual periods, but many do. You might notice that your periods are heavier than normal, or that they last longer than seven days. Some women find that their periods come at irregular intervals, i.e., they vary from month to month.

Heavy periods on their own do not necessarily mean that you have endometriosis. However, if accompanied by severe period pain or any other symptoms on this list, they are worth mentioning to your doctor.

Fatigue and gut symptoms

One of the most ignored symptoms of endometriosis is fatigue. Fatigue is not just feeling tired due to lack of sleep. It is a fatigue that does not get better with sleep. It is a fatigue that gets worse in the lead-up to your period. In addition to fatigue, many women with endometriosis experience symptoms such as bloating, or "endo belly," constipation, nausea, and abdominal pain. 

These symptoms are so common in endometriosis that they often lead to a misdiagnosis of irritable bowel syndrome before even considering endometriosis. If your symptoms have a cyclical pattern, or if they get worse in the lead-up to your period and get better in the middle of your cycle, this is a clue that your symptoms might not just be related to your digestive system. A qualified naturopath with experience in gut health support can assist you in exploring this possibility.

Why endometriosis symptoms are sometimes dismissed as "normal"

It takes an average of six to twelve years to definitively diagnose endometriosis in Australia. This figure is staggering, yet once you realise the level to which period pain has been normalised, it makes perfect sense.

Women are told from a young age that a period is supposed to hurt, and you are given a hot water bottle and told to get on with it. When you bring it up with your GP, they may tell you that it is within the range of normal, and it will stop once you go on the pill. The pain just becomes part of the background of your life, and you don’t even think about it anymore because everyone around you has told you that suffering through your period is just part of being a woman.

This normalisation process is the biggest single barrier to early diagnosis. A study published in the American Journal of Obstetrics and Gynecology has pointed to the four to eleven-year diagnostic delay being caused in large part by the normalisation of women's pain and their varied symptoms. In all the cases where women have finally been given a diagnosis of endometriosis, they have all said the same thing: "I thought everyone felt like this." They have all been adjusting their lives to accommodate their pain, pain that is anything but normal.

The fact is, if your pain is severe enough to interfere with your daily activities, your work, your relationships, or your sleep, it is worthy of investigation. If you have been dismissed about it once, it is well worth your while to seek a second opinion. You know your body. If something doesn’t feel right, trust your instincts and continue to ask questions until someone starts to listen.

Symptoms that feel like something else

One of the most frustrating things about endometriosis is that it can feel like something else. In many cases, women are treated for years for other conditions before anyone even considers endometriosis.

When it looks like irritable bowel syndrome

The similarity between endometriosis and irritable bowel syndrome is uncanny, with similar symptoms of bloating, constipation, diarrhea, pain, and nausea possible with both issues. In addition, if endometrial growths have developed on the bowel, the symptoms can be almost identical to inflammatory bowel disease.

The only real difference between the two diseases, about bowel symptoms, is that IBS symptoms are affected by stress and your diet, while endometriosis bowel symptoms are affected by your menstrual cycle, with symptoms increasing in the lead up to your period and decreasing as your cycle enters the follicular phase. If you have been diagnosed with IBS, yet your symptoms are clearly related to your cycle, it might be worth exploring the possibility of endometriosis as the cause of your symptoms. More information on the differentiation of endometriosis and IBS can be found on our IBS support page.

The truth is, some women have both, and that just makes things even more complicated. But if you're not seeing relief with standard IBS treatment and your symptoms correlate with your menstrual cycle, that's something you can explore with a women's health practitioner.

When it resembles symptoms of pelvic inflammatory disease or bladder problems

Endometriosis sometimes resembles pelvic inflammatory disease, especially in situations where there is chronic pelvic pain and pain during sex. Pelvic inflammatory disease is a disease that occurs due to infection of any of the organs in the pelvic region. This disease is normally caused by bacteria that are transmitted through sex.

Similarly, when endometriosis affects the bladder, symptoms can include urinary urgency and frequency, which may mimic interstitial cystitis. Women may cycle through a pattern of antibiotics for UTIs that may not have bacteria present in their cultures. In reality, the symptoms may be caused by the endometrial tissue irritating the bladder wall.

If your symptoms continue to recur, or if your tests continue to come back normal while you know something is wrong, then that in itself is a clue. If something isn't quite adding up, it's definitely worth exploring endometriosis with a women's health practitioner who undersands the nuances of the disease.

The signs your GP will look for during assessment

If you suspect that you have endometriosis, the first step to take is to visit your GP. It will help to have some knowledge of what your GP will do when assessing your condition.

What happens during a pelvic exam

Your GP will probably start by taking a thorough medical history, which includes information about your symptoms, menstrual cycle, family history, and how your pain affects your daily life. When explaining your symptoms, try to be as detailed as possible. Keeping a symptom diary for a few cycles before seeing your doctor can be very helpful, as it will give your doctor facts rather than impressions.

A pelvic exam might also be done. In a pelvic exam, the doctor checks for tenderness, nodules, or other abnormal features in the pelvic area. While it is not possible to diagnose endometriosis with a pelvic exam, it can show signs that require further investigation, which might include areas of tenderness or immobility of the uterus.

Imaging tests and laparoscopy

Following the physical examination, your GP might refer you for some tests. The first test used is an ultrasound scan, and this, in most cases, can identify ovarian endometriomas as well as deep endometriosis lesions. Magnetic resonance imaging might be used in some complicated cases, especially if deep tissue layers are involved.

Imaging tests, however, are not able to identify all endometriosis lesions. Superficial lesions, which are the most common form, cannot be detected using ultrasound or MRI scans. 

The 2022 ESHRE guideline for endometriosis states that, while imaging tests are an integral part of the diagnostic process, it must be remembered that if the results are negative, endometriosis, especially superficial peritoneal endometriosis, cannot be ruled out. This is just another reason for the average time to receive a diagnosis to be as high as six to eight years, as tests return "normal" and nothing is done.

Laparoscopic surgery is considered the most definitive means of diagnosing endometriosis. This involves using a laparoscope, which is a small camera that is inserted through a very small incision in the navel, to visually observe and sometimes biopsy endometriosis growths. It is considered the only definitive means of diagnosing endometriosis and allows for the treatment of the growths at the same time.

What you need to remember is that it is not your fault that it took such a long time to get a diagnosis. The delay in diagnosis is due to normalisation of symptoms and their overlap with other conditions, and the inability of non-invasive tests to provide a definitive diagnosis. Getting an early diagnosis and treatment may help alleviate symptoms and prevent scarring in your reproductive organs.

Who is most at risk?

Endometriosis can affect anyone, but some risk factors can increase your chance of developing endometriosis.

Family history and other risk factors

Having a family history of endometriosis is one of the greatest risk factors. If your mother or sister has endometriosis, you are at a higher risk. Starting your menstrual cycle before the age of twelve and having short menstrual cycles of less than 27 days can also increase your risk, as more frequent menstrual cycles expose you to more retrograde menstruation.

Women who have never given birth are at a higher risk, too, and pregnancy helps to reduce the risk because of the continued presence of progesterone. Abnormalities in the cervix or uterus that interfere with normal menstrual flow can also contribute to endometriosis.

How age and oestrogen levels contribute to endometriosis

The most common age for endometriosis to be diagnosed is between 20 and 40, though symptoms can start as young as adolescence. More oestrogen in the body increases the risk of endometriosis, and this is also the reason that endometriosis tends to go away after menopause, though this is not always the case.

A lesser-known part is played by the immune system. In a normally functioning immune system, misplaced endometrial tissue is eliminated before implantation and growth. If the immune system function is abnormal, misplaced endometrial tissue is more likely to take hold outside the uterus.

The actual cause of endometriosis still remains unknown, though the current understanding of the possible cause involves a combination of retrograde menstruation, immune system dysfunction, genetic factors, and hormone levels; no single factor can be pinpointed as the cause of endometriosis. Understanding your hormone levels can be a good place to start, and hormone testing can be very useful in this regard.

The impact of endometriosis on fertility

One of the biggest issues that women worry about when they suspect that they might have endometriosis is whether it will affect their ability to have children. While the answer to that is that it can, it is not as straightforward.

A third of women who have endometriosis face fertility issues. There are various ways endometriosis can cause fertility issues. The endometrial growths and scar tissue can cause blockage of the fallopian tubes, which means that the egg and sperm cells never meet. The inflammation in the pelvic area can destroy eggs and embryos. It can also cause ovulation and hormone production in subtle ways that lower the chances for conception, even if the fallopian tubes are open.

However, it is possible for women who have mild to moderate endometriosis to conceive and carry a pregnancy to term. If you are planning a family and know or suspect you have endometriosis, it is a good idea to have that conversation with your healthcare provider as soon as possible, as it can progress over time.

Fertility treatment, like IVF, can be used to help women with endometriosis who are having trouble conceiving. Working with a women's health fertility naturopath who understands the impact of endometriosis on your hormones and your fertility can support you in improving your egg quality and hormones alongside a fertility specialist.

What a naturopathic approach adds to endometriosis care

Conventional endometriosis treatment usually involves pain relief and hormone management, such as the oral contraceptive pill or GnRH agonists, and surgery for more severe endometriosis. These are powerful interventions, and for many women, they are essential for the short term. However, they are a band-aid-like approach and do not necessarily tackle the whole picture.

A naturopathic approach does not replace medical treatment options. It complements it, addressing the underlying causes that perpetuate the condition, such as inflammation, hormonal imbalance, gut issues, and immune system imbalance.

Supporting hormonal balance and gastrointestinal health through functional medicine

Women who integrate their medical care with nutritional and herbal medicines seem to respond better to treatment. Endometriosis is an oestrogen-dependent, pro-inflammatory condition. This provides a clear direction for a naturopathic practitioner to follow. A good place to begin is by promoting hormonal balance. Your body's ability to clear excess oestrogen relies upon the efficient functioning of your liver and your gastrointestinal system. If your gastrointestinal system or your liver's detoxification pathways are sluggish, then oestrogen will not be cleared from your system.

The other pillar is inflammation management. There are certain herbal medicines and nutritional supplements that have excellent evidence for their ability to reduce the inflammatory mediators that cause pain and endometriosis. A naturopath at Floralia Wellness will develop a treatment plan that is tailored to your pathology results, your symptoms, and where you are in your treatment journey. Are you pre-surgery, post-surgery, trying to conceive, or just trying to get through the month with less pain? We'll work with you to develop a treatment plan that meets your needs. You can read more about our approach to endometriosis treatment on our endometriosis specialist page.

Dietary changes are another factor. While this is not about following some generic "anti-inflammatory diet" that you read about online, there are certain dietary factors that can contribute to your endometriosis.

How naturopathy works with your GP or specialist

At Floralia Wellness, we take an integrative approach to naturopathy, meaning that your naturopath works with your other health care providers to improve outcomes. So, if you are seeing a gynaecologist or fertility specialist, your naturopathic care will be working to complement that care, not against it.

If you are on hormone therapy, herbal medicine can help alleviate the side effects of hormone therapy and support your body through this process. If you are preparing for or recovering from laparoscopic surgery, naturopathy can be very helpful in supporting your body through this time of increased stress and promoting your body's natural healing processes. Additionally, if you are interested in exploring some natural options before committing to more invasive procedures, naturopathy can be a useful tool to focus on holistic, preventative and natural remedies to improve the root cause of the condition.

When to see someone about your symptoms

If your symptoms are interfering with your daily life, whether it is pain that keeps you out of work, fatigue that does not improve, gut symptoms that come and go with your period, or sex that has become something you dread instead of something you enjoy, it is time to seek help for your symptoms.

You do not have to have a diagnosis to seek out someone about your symptoms. You do not have to have "bad enough" symptoms. If something feels off, it is enough.

Start with your GP. Be very specific about your symptoms and how long they have been occurring. If you feel as if your concerns are not being heard, seek a second opinion. You can schedule an appointment with a naturopath at Floralia Wellness to begin building your supportive women's health care team as well as seeking medical investigations. Our women's health clinic is a safe space for you to be heard, seen, and supported from the very first appointment.