endometriosis and testing

What is endometriosis?

Endometriosis is an estrogen-dependent inflammatory and immune disease. It involves growth of endometrial-like tissue that grows outside of the uterus.

Endometriosis impacts about 5-10% of the female population and some of the common symptoms include extreme pelvic pain, heavy periods and infertility.

There are many theories as to why endometriosis develops, although more research is needed, including retrograde menstruation, genetics, toxins, bacteria, hormonal and more.

It is important to make it clear that endometriosis is an immune and inflammatory disease that is influenced by estrogen. Therefore it is not a hormonal condition.

What do I need to know about ENdometriosis and testing?

Let’s start by looking at what kind of testing you can expect from your GP if you have or suspect you have endometriosis.

The GP approach to endometriosis and testing in the UK

Unfortunately the tests for suspected endometriosis are currently very invasive and can take a long time to receive the correct tests and diagnosis. If your GP suspects endometriosis from your symptoms they may undertake some of the following tests:

Pelvic exam: This may reveal abnormalities such as an enlarged ovary from an endometriotic cyst (where the endometrial tissue is on your ovary causing a cyst) or sometimes the uterus may feel fixed instead of mobile due to scar tissue. More than often however it is completely normal. They may also do swabs to rule out pelvic inflammatory disease which can also cause pelvic pain.
Blood tests: your GP may want to check your full blood count (FBC) to ensure you are not anaemic from the heavy bleeding, or to rule out other conditions that can mimic some of the symptoms e.g. coeliac disease.
Urine samples: A urine sample may be done to rule out any urological conditions that could be causing the symptoms or to check for the presence of blood in your urine which can be a sign of endometriosis.
Pelvic ultrasound scan: A pelvic ultrasound scan may be used to check for any other abnormalities that may be mimicking endometriosis e.g. fibroids which can also cause heavy, painful periods. Occasionally, actual signs of endometriosis can be picked up on an ultrasound scan and it may be helpful in diagnosis. These include endometriotic cysts on the ovary (sometimes called chocolate cysts) and pockets of endometriosis that are large enough to have infiltrated into the tissue deeply enough to be seen. In the majority of cases, if the endometriosis has only embedded superficially, it is difficult to see on an ultrasound.
MRI: for those with more severe endometriosis, gynecologists will occasionally use MRI instead of an ultrasound to determine the extent of it. This is because an MRI is better than ultrasound at showing how deep the endometriosis has infiltrated the organs and tissues. However, again in some cases of endometriosis, especially more mild cases, the lesions may just be very superficial so an MRI may miss them too. This is why MRI is typically only used in those with known endometriosis, and/or typically those with more severe endometriosis, where an assessment needs to be made as to how badly the organs and tissues have been infiltrated by the endometrial tissue.
Laparoscopy: A laparoscopy is the definitive diagnostic measure of choice. However, because it involves a general anesthetic, which itself poses risks, it is only undertaken in certain circumstances.

It can be a long journey from the first appointment to diagnosis, this is because an accurate diagnosis of endometriosis can only be made by a gynecologist, typically after a laparoscopy.

In some cases a GP may be able to suspect endometriosis based on your symptoms and examination findings. It is important to understand however that you can have endometriosis and have a normal pelvic examination and/or ultrasound scan.

In many cases if the GP suspects endometriosis they may decide to put you on the oral contraceptive pill.

Read more about endometriosis treatment.

So how does FUTURE WOMAN approach testing for endometriosis?

Why do we test hormones in endometriosis if it is not a hormonal condition?

As previously mentioned, endometriosis is an inflammatory and immune disease and is not a hormonal condition but it is influenced by estrogen. Therefore when testing for endometriosis we are essentially testing for some of the common drivers and influences including estrogen and its pathways, progesterone, inflammation and stress.

What’s the best method to test hormones if you have endometriosis?

You may be familiar with blood testing for hormones, but in actual fact, urine testing for hormones has been shown to provide a more accurate and comprehensive picture. Our FUTURE WOMAN hormone tests involve collecting 4 dried urine samples across one day in your cycle to make it as easy (and pain free!) as possible.

**Why is urine testing more accurate than blood testing for hormones?**

Our hormones pulse, which means that the glands that produce and release hormones actually secrete them in short bursts instead of in a steady stream throughout the day. With a single blood test you might be capturing your hormone levels at a peak, a trough or somewhere in between. But with 4 dried urine samples, we can capture a more accurate reading of your hormone levels by taking a simple average.

**Why is urine testing more comprehensive than blood testing for hormones?**

While blood testing can reveal overall sex hormone levels and whether they are in balance, with urine testing we can also look at sex hormone metabolites. And metabolites provide so much valuable information.

Each of our sex hormones need to be used, processed and finally eliminated from the body via urine or the gut, and we can test how well your body is doing this. If we struggle to effectively process or metabolise our hormones, then we can get a lot of worsening of endometriosis symptoms such as painful and heavy periods.

10 key markers we test for endometriosis

Everyone’s hormonal picture is different, so by gaining insights into these 10 key markers (available with our Advanced Hormone Test and Advanced+ Hormone Test, our practitioners will be able to understand what’s driving your symptoms and to assess if your hormones are worsening the symptoms you experience with endometriosis, as well as making more personalised and targeted recommendations to feel better.

Estrogen: Estrogen can act as a driver of the inflammation and pain in endometriosis. This is because estrogen plays a very important role in how endometrial tissue grows, it essentially causes it to thicken which in turn can increase the pain, heavy periods and inflammation that a woman with endometriosis might experience. Women who have endometriosis typically have high estrogen (in particular estradiol) levels, and therefore it is important to address and test estrogen. High estrogen can also lead to the increase of histamine being released from mast cells which can in turn increase pain and inflammation even more. This inflammation from the increase in mast cell activation and release of histamine can contribute to the proliferation of endometrial like tissue growing outside the uterus.
Estrogen metabolites: we look at Phase 1 and Phase 2 estrogen metabolites. Issues with estrogen metabolism can worsen the symptoms of endometriosis and even put us at greater risk for certain cancers. For example if you favor the 16-OH pathway this can lead to increased pain and increased heavy periods too as this pathway is considered to be more estrogenic. Read our handy guide to the basics of estrogen detoxification.
Progesterone and progesterone metabolites: this can help to determine if you are ovulating, and if so, whether you are producing enough progesterone. Low progesterone can lead to symptoms such as anxiety, poor sleep and low mood but it can also lead to unopposed estrogen levels which can result in increased heavy and painful periods. This is because progesterone thins the endometrial lining, whereas estrogen thickens it. The ratio between progesterone and estrogen is important to look at in endometriosis for this reason.
Methylation status: Methylation is a process that prepares estrogen to be removed from the body. If we have poor methylation this can lead to used estrogen being poorly removed from the body and used again resulting in increased estrogen levels.
Androstenedione: this hormone can convert into both testosterone and estrogen in the body, which means it can contribute to higher levels of both hormones. This can be a problem in endometriosis as higher estrogen can contribute to worsening symptoms such as pain and inflammation.
8OHdG: This is a marker of oxidative stress. Women with endometriosis typically have higher levels of oxidative stress in comparison to those who do not. Oxidative stress means there is an imbalance between antioxidants and free radicals in the body. This can lead to increased overall inflammation which can act as a driver of endometriosis.
Metabolised and free cortisol and cortisone: these are key markers to help us assess your HPA (hypothalamus-pituitary-adrenal) axis. Increased cortisol can also contribute towards inflammation in the body which in turn can act as a driver of endometriosis. Women with endometriosis are more likely to have higher cortisol levels from the emotional and physical stress of endometriosis. It is also common that women with endometriosis have low cortisol due to long-term stress too.
Cortisol awakening response (CAR): a mini stress test that provides valuable insight into your stress response across the day. An elevated CAR result suggests that you may have an overactive HPA response which could contributing to imbalance progesterone and estrogen and also may be contributing to increased inflammation due to dysregulated cortisol levels from the adrenal glands. The cortisol awakening response is typically lower in those with endometriosis.
Indican: This is a marker of gut dysbiosis (imbalance). This is important as imbalanced gut bacteria can be a driver of endometriosis, especially if there are high levels of gram-negative bacteria. This marker cannot determine what type of bacteria are out of balance but it is a good indicator that the gut will need to be addressed as it may be contributing to hormone imbalance and overall inflammation in the body.
B6 – Xanthurenate and Kynurenate: These are markers for the vitamin B6. B6 is very important in hormone health. B6 is vital for healthy ovulation and progesterone levels and it also plays a role in histamine detoxification. If histamine is high it can increase estrogen and if estrogen is high it can increase histamine. High histamine can increase general inflammation and contribute to the proliferation of endometriosis as well as painful and heavy periods.

Can I test if I’m on hormonal contraception?

Many women are placed on hormonal contraception for endometriosis.

If you’re using the copper coil, then it is still possible to test your hormones as the copper coil does not suppress ovulation or the natural production of progesterone or estrogen.

However, if you’re on hormonal contraception then we can’t test your hormone levels. This includes the mirena IUD, oral contraceptive pill and implants. These forms of contraception can shut down the communication pathways from the brain to the ovaries and therefore there is suppressed progesterone and estrogen hormone production. This means the tests will not be able to reveal what is truly happening with your hormones.

If you’re considering coming off hormonal contraception, we generally suggest waiting at least 1-3 months before testing your hormones. If you are looking for support in coming off hormonal contraception or when you should test please book a free 15 minute call with one of our women’s health experts.